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A balanced look at gluten sensitivity

Even though it doesn’t appear on any calendar, May 2014 will go down in history as “gluten sensitivity month.” After RealClearScience picked up on a 2013 paper that brought into question the existence of non-celiac gluten sensitivity (NCGS), news sites were obliged to post their own analysis of the article, and the blogosphere was alight with pro- and anti-gluten posts. One of the authors of the paper in question, Dr. Peter Gibson of Monash University, was even mentioned on the People magazine website, which gives him the distinction of being the only researcher to be published alongside the Kardashians.

Photo by flickr user surlygirl used under a CC licence.

Photo by flickr user surlygirl used under a CC licence.

The Monash paper,1 which was previously discussed on SBM, suggested that it might be the fructans in wheat and not gluten that is responsible for symptoms in IBS sufferers who feel better on a gluten-free diet. Fructans belong to a group of short-chain carbohydrates known as FODMAPs that are readily fermented by bacteria in the intestine. If fructans were really to blame for wheat-induced gastrointestinal symptoms, this would be good news for IBS sufferers currently on a gluten-free diet — for some, a diet low in FODMAPs would be less restrictive than one without gluten, making it less prone to nutritional deficiencies.

As it stands, the existence of NCGS has neither been proven nor disproven by anyone. But gluten sensitivity sits at the intersection of several dilemmas in medicine today and, unlike how it’s betrayed in the media, is hardly an all-or-nothing affair. Proving it wrong will not instantly heal the people who have prescribed themselves a gluten-free diet. Proving it wrong will not produce a cure for IBS, a shorter time to a celiac diagnosis, or the correct way to handle potential celiac disease. Neither will proving it right. In the eyes of one gluten avoider, “Modern medicine is really good at crisis intervention…[but] they don’t do well with chronic issues”.2

With these issues in mind, it’s time to move past the media debates and fad dieters and take a balanced look at NCGS. This overview will use four recent articles by the Monash group1, 3, 4, 5 as a framework to uncover some of the factors contributing to the gluten sensitivity phenomenon. Even though it has been gone over many times, a discussion of the FODMAPs study is still in order — in fact, essential — to appreciate the central importance of the elimination diet in diagnosing a food sensitivity. Along the way, we’ll get an idea of who the gluten sensitive might be, how successful gluten-free diets really are, and how challenging it is to pursue a celiac diagnosis.

Some definitions

To refresh, here are some of the key ideas discussed:

  • Gluten: A protein found in relatively large amounts in wheat, but also found in other grains.
  • Celiac disease: A genetically-linked autoimmune disorder caused by the small intestine reacting to gluten. Causes pain, altered bowel movements and malnutrition.
  • Irritable bowel syndrome: A diagnosis made purely on the basis of symptoms (bloating, pain and either diarrhea, constipation, or both), with no known current cause.
  • Elimination diet: A diet which removes specific foods or classes of foods from the diet in an effort to identify the trigger to an allergic reaction or symptom(s).

A food sensitivity is born

In 2011, an international panel of experts defined NCGS as “a non-allergic and non-autoimmune condition in which the consumption of gluten can lead to symptoms similar to those seen in celiac disease”.6 Non-intestinal symptoms can include behavioral changes, bone or joint pain, muscle cramps, leg numbness, weight loss, and chronic fatigue.7 But this is only a working definition, and there is still a lot of uncertainty as to what NCGS actually represents, even for its proponents.

So far, NCGS appears to be a heterogeneous phenomenon, with at least three different and potentially-overlapping subtypes6, 8:

  • A type reminiscent of celiac disease — a family history of celiac disease or the celiac HLA genes but no increase in intestinal permeability and no auto-immune response.
  • A type reminiscent of irritable bowel syndrome — intestinal motility issues but a greater frequency non-intestinal symptoms.
  • A type reminiscent of food allergies — prior history of allergy or concurrent food sensitivities and some immunological markers for celiac disease, but no activation of mucosal basophils by gliadin.

Multiple subtypes imply multiple mechanisms, and this too needs to be ironed out for NCGS. Sapone et al.9 described NCGS as “an inflammatory condition mostly supported by innate immune mechanisms,” which differentiates it from celiac disease and wheat allergy, and in vitro evidence suggests that other poorly-digested wheat proteins known as amylase-trypsin inhibitors might trigger the innate immune response.6 Changes in intestinal microbiota may also play a role in NCGS.10 And, of course, the fructans have their own special magic.

The backstory

When NCGS was officially created by consensus, things weren’t proceeding according to the normal order. Celiac researchers, mainly centered at the University of Maryland, were pretty convinced that they had seen non-celiac patients whose symptoms had improved on a gluten-free diet. They searched for a set of biomarkers that would shed light on these cases, but found nothing consistent except for the absence of two celiac hallmarks — an autoimmune response and increased intestinal permeability.6, 8

From a food sensitivity perspective, however, searching for biomarkers is putting the cart before the horse. Food sensitivities, like cow’s milk protein intolerance or certain food additive intolerances, are only recognized after they have been demonstrated in studies using a double-blind, placebo-controlled food challenge (DBPCFC). The DBPCFC works regardless of the mechanism behind the reaction, so it can be used before any biomarkers have been identified.

Back in 2011, only one study had been completed on gluten sensitivity using a DBPCFC,3 and this first bit of positive evidence came from the Monash group. The study looked at a small group of IBS sufferers who identified themselves as gluten sensitive and who tested negative for celiac disease. They could only enter the study if their symptoms — abdominal pain, bloating, gas, constipation, diarrhea, or tiredness — were currently well controlled by a gluten-free diet.

Most DBPCFC studies use a crossover design, but the first Monash study randomly divided the participants into test and control groups. All participants continued on their usual gluten-free diet during the course of the study and were challenged with either gluten-free or gluten-containing low-FODMAP bread and muffins. The gluten group experienced greater gastrointestinal symptoms and tiredness compared to the control group, so it looked like gluten could induce GI symptoms on its own.

Shortly thereafter, a group at the University of Palermo11 used a DBPCFC to see whether any of their IBS patients were affected by wheat. In the end, they reclassified 30% of the 920 patients as suffering from wheat sensitivity. Notice I said wheat sensitivity — this study used capsules of wheat flour as the challenge instead of gluten. It also differed from the Monash study in that it included a stricter elimination diet before and during the challenges, not just relying on participants to maintain their own gluten-free diets.

The elimination diet — or the baseline diet — just may be the most important part of a DBPCFC. It puts everyone on a level playing field, stabilizing symptoms and doing away with any effects that might carry over from the participants’ normal diets. An elimination diet excludes the food under investigation and, if the study is thorough, all other foods or food additives that might produce a reaction. If symptoms don’t improve by the end of the elimination diet, then the study is on the wrong track.

The Palermo researchers were looking at a broader set of food sensitivities than just wheat. Gluten-free participants were asked to resume a normal diet for 2-4 weeks before beginning the elimination diet, which excluded wheat plus cow’s milk, eggs, tomato, and chocolate — foods known to aggravate IBS — and any other triggers identified by the participants. A challenge was considered positive if symptoms returned after having disappeared during the elimination diet. Of those testing positive for wheat sensitivity, the majority were also positive for cow’s milk protein intolerance when challenged separately; half were also sensitive to eggs and tomato.

Since many different foods are commonly, although not universally, reported to trigger or worsen IBS symptoms, the Palermo study didn’t go far enough to determine whether NCGS (or wheat sensitivity) is really its own entity outside of IBS or to explain the possible overlap between the two conditions. On the other hand, the Monash results were significant because gluten alone seemed to have caused an adverse reaction in IBS sufferers. But this result needed to be replicated under stricter conditions, so 2013 brought a new paper from the Monash group1 on a second gluten trial.

FODMAPs-gate

In IBS, the enteric (intestinal) nervous system is easily overstimulated, leading to abnormal contractions and an exaggerated perception of pain. Food triggers IBS symptoms by stimulating the enteric nervous system directly through various chemical receptors or indirectly by pressure.12 FODMAPs — which include fructans, galactans, polyols, fructose, and lactose — lead to more pressure in the intestine than other foods because they are poorly absorbed, rapidly fermented, and osmotically active.13 In other words, they cause gas and loose stools. The low-FODMAP diet, developed in 2008 by the same group at Monash University that we have been discussing, is the first comprehensive diet plan shown to reduce symptoms in the majority of IBS sufferers.14

Before the low-FODMAP diet, avoiding single foods like wheat or milk wasn’t always effective in treating IBS14; eliminating more than one carbohydrate type, like fructans and fructose, seems to have an additive effect that controls IBS symptoms better.15 That said, not everyone with IBS is sensitive to all of the FODMAPs, and the diet is highly customizable. The effectiveness of the low-FODMAP diet means that any diet study involving IBS sufferers must control for the effects of high-FODMAP foods.

The second DBCPFC study from the Monash group — the one that has received all the media attention — was a randomized crossover trial using stricter diets and stricter testing to make sure that participants did not have latent celiac disease. In this trial, meals were provided and additional snacks were logged. Here they ran two experiments — one where the elimination diet excluded high-FODMAP foods and the other where the elimination diet excluded high-FODMAP foods, dairy, and known triggers of pharmacological food intolerance reactions.

In the first arm of the study, participants were given challenge foods containing gluten, gluten plus whey, and pure whey, each separated by a washout period. Overall, symptoms improved during the low-FODMAP elimination diet but worsened for each of the challenges. Individually, though, only 3 out of 37 showed a significant response attributable to gluten when all challenges were considered.

In the second arm, 22 people from the first group were rechallenged with foods that contained gluten, whey, or no additional protein. This phase, which was meant to verify the results of the first using an even stricter elimination diet, could not reproduce any of the previous reactions. For example, only 2 out of 22 responded to gluten in the second arm, and these were not the same people who responded to gluten in the first.

One blogger took issue with the fact that many of the participants reacted to whey: “If some of the ‘placebo’ and low-gluten patients were, in fact, sensitive to whey, then that would invalidate the results of the study.” But that’s not true. The point to remember is that most people did not react to the same challenge food twice, and only one person consistently reacted to whey. Furthermore, it isn’t a catastrophe in a study like this if someone reacts to the placebo — this can happen for many reasons, including just having a bad day. What matters is how the reaction to the real challenge compares to the placebo reaction; if it is significantly greater, then the challenge is positive.

What did the researchers conclude? Considering both arms of the study and the immunological testing that also took place, no evidence of gluten-specific effects were found in patients on a low-FODMAP diet. They did not conclude that gluten sensitivity does not exist, only that “gluten may not be a specific trigger of functional gut symptoms once dietary FODMAPs are reduced.” That, however, does not settle the debate over gluten sensitivity. What the two Monash trials have shown us is the correct elimination diet to be used when looking for NCGS.

Gluten free with symptoms

The story doesn’t end there, though. From the Monash work we also learned that a good number of gluten-free dieters continue with the diet even though their symptoms do not completely resolve. This came out in two ways. To be included in the two Monash studies, participants needed to have well-controlled symptoms on a gluten-free diet. For the second study, for example, 147 volunteers were screened using several questions, one being, “Do you currently feel in control of your symptoms?”4 To this, 22% answered “no,” 3% answered “sometimes,” 16% answered “mostly,” and 59% answered “yes.” Then, when participants rated their symptoms at the beginning of the study, 11 of 37 were under significant distress, and 22% of the group significantly improved while on the low-FODMAP elimination diet.1

It is tempting to think that the people who did not see complete improvement on their own gluten-free diet were not really sensitive to gluten in the first place, but we don’t have the data to support this — only 58% of the larger group believed that they were strictly gluten free, and it is not clear how many of the gluten ‘cheaters’ still had symptoms. As the researchers pointed out, we also do not know how the symptomatic group felt before they began avoiding gluten — perhaps they had actually improved quite a bit on a gluten-free diet, but just not completely. Another explanation is that FODMAPs were really to blame for their symptoms, and avoiding only wheat wasn’t enough to provide complete relief.

It isn’t surprising that a person could be mistaken about having gluten sensitivity. According to someone like Dr. Oz, gluten sensitivity can be diagnosed by avoiding gluten for a while — say two weeks or a month — and then trying some to see what happens. But avoiding a staple food like wheat amounts to a major change of eating habits, and it is likely that wheat will not be the only food that is eliminated. For those who aren’t accustomed to performing experiments on themselves, these diet instructions don’t explain that any and all foods excluded during an elimination diet must be excluded for the entire diet and then used as a challenge later on. On top of this, placebo challenges really are necessary, and one round of challenges may not be enough — when symptoms are subjective or when a strong nocebo effect is expected, the active and placebo challenges should be randomized and repeated three times.6, 7

Oddly, many participants from the second Monash study opted to continue their gluten-free diet after the study ended because the diet made them “feel” better.5 This intrigued the researchers, so they invited the participants back for a third study to find out whether gluten was affecting their mental state.5 This trial proceeded along the same lines as the second, and mental state was assessed using the Spielberger State Trait Personality Inventory. Gluten still had no impact on gastrointestinal symptoms, but it did induce feelings of depression. This is a very interesting result because it could explain the lure of the gluten-free diet; however, researchers are still a long way off from uncovering a definite link between gluten and depression, transient or otherwise.

The missing celiacs and other sufferers

The final bit of information from the Monash researchers comes from the 147 people who applied to participate in their gluten studies.4 Of these, 44% had initiated their gluten-free diet themselves; the rest were following the advice of an alternative health professional (21%), dietitian (19%), or general practitioner (16%). In the surveys that followed, the researchers determined that two-thirds had not adequately excluded celiac disease, meaning that 15% had not been tested at all for celiac disease and that 29% of those who had undergone duodenal biopsies did not consume enough gluten beforehand for the results to be valid [see 18]. This includes half of the tests initiated by general practitioners.

Considering that one in 56 people with symptoms will have celiac disease,19 it is important to know why people feel confident diagnosing themselves with gluten sensitivity without first ruling out the more serious problem. Even if they do maintain a strict gluten-free diet for their entire lives, without a formal diagnosis, these people with possible celiac miss out on follow-up care, accommodations by schools and employers, and tax breaks or food subsidies in many countries. The truth is, many have pursued a celiac diagnosis or wish that they could have pursued one. The decision to go it alone is not taken lightly — consider these situations pulled from stories posted online:

  1. They met the serologic for celiac disease but had a negative biopsy.
  2. Their doctor won’t test them even though they have asked.
  3. Their doctor says that they cannot have celiac disease because they are overweight.
  4. Their doctor told them that they are too old to have celiac disease.
  5. They were not told to or told not to do a gluten challenge before the endoscopy.
  6. Their doctor ordered a colonoscopy to check for celiac disease.
  7. They already believe that they have celiac disease because of their symptoms and family history.
  8. An alternative practitioner told them that they have celiac disease because their reaction to gluten is severe.
  9. They are already gluten free and don’t want to “get glutened” again in order to be tested.
  10. Having a celiac diagnosis won’t affect their commitment to a gluten-free diet.
  11. They believe that the Cyrex test is more thorough than conventional celiac testing from a doctor.
  12. They believe that celiac disease is only a minor part of the spectrum of gluten-related disorders.
  13. They are worried that their health and life insurance premiums will increase.
  14. They don’t want a preexisting condition on their the health insurance records.
  15. They do not have enough money for an endoscopy.
  16. Their health insurance wouldn’t pay for an endoscopy.

Regardless of what we might think about these reasons, they paint the picture of a larger problem. Roughly 80% of celiac cases go undiagnosed,20 a situation that The Lancet has described as a “public health farce”21 in light of the millions of healthy people who choose to be gluten free. Undiagnosed celiac disease can lead to osteoporosis, anemia, infertility, certain intestinal cancers, other autoimmune disorders, and an increased risk of mortality, although the latter is still under debate.22, 23 Still, the average time to receive a celiac diagnosis has been around 11 years.24

Right now we don’t know how many people with self-diagnosed gluten sensitivity actually have celiac disease, but the Monash data tells us that this is a significant concern. Efforts are being made to cut down the time it takes for a celiac diagnosis, but progress is slow.24 Increasing celiac awareness among physicians is part myth busting and part reeducation, and in the absence of mass screening, doctors must be able to spot non-GI or “atypical” symptoms and associated conditions that suggest the presence of the disease.25 At the same time, the protocol for diagnosing celiac disease is being reexamined26 — in Europe, the duodenal biopsy, currently regarded as the gold standard for celiac diagnosis, can be omitted in certain circumstances.27

We also don’t know how often potential celiac disease is actually mislabeled as gluten sensitivity. Potential celiac disease describes cases where serologic and genetic markers for celiac disease are positive but the biopsy is negative.24 There is no consensus on whether to treat potential celiac disease, nor, for that matter, whether it is a real problem or just a false-positive result.24, 28 Some evidence suggests that a gluten-free diet is beneficial,28 while another report describes patients whose symptoms spontaneously improved even though they continued to eat gluten.29 Until the issues surrounding celiac and potential celiac disease have been resolved, non-celiac gluten sensitivity — or at least one of its subtypes — cannot be clearly defined.

Where do we go from here?

In a large Australian survey from 2013, roughly 7% of respondents had diagnosed themselves with gluten sensitivity.30 The gluten free fad is just as popular in Australia as it is in the US,30, 31 so this figure might also estimate the prevalence of gluten sensitivity here, even though a 2009 estimate was much lower at 0.55%.32

Who might be in the 7%? Some with IBS, some with a botched celiac diagnosis, some with potential celiac disease, some who are intolerant to foods that they inadvertently eliminated because of their new diet, some who get only a psychological benefit from avoiding gluten, some whose symptoms continue despite their best efforts, some who really are hypochondriacs, and perhaps some with NCGS as its own entity. It doesn’t even matter whether non-celiac gluten sensitivity exists — these people will remain.

But it’s going to be a while until gluten sensitivity is understood. According to Dr. Alessio Fasano, director of the Center for Celiac Research at the Massachusetts General Hospital, NCGS stands where celiac disease stood 40 years ago.8 Even so, all we need are a few good DBPCFC trials to answer the basic question as to whether gluten sensitivity exists. This may be easier said than done, however, as the Monash group found such a strong nocebo effect in their trials that they now believe that future research should involve IBS sufferers who have not tried a gluten-free diet before.33

In the meantime, more people will suspect that they are sensitive to gluten, and if they are not to be lost to self-diagnosis or alternative medicine, the medical community must be able to lead them through the process of sorting out their suspicions. The Monash researchers have suggested an interim pathway for diagnosing gluten sensitivity, which includes:4

  1. The adequate exclusion of celiac disease.
  2. The exclusion of other dietary triggers, like FODMAPs or other foods suspected by the individual.
  3. A gluten-free diet, if symptoms did not resolve or improve in Step 2.
  4. Blinded gluten challenges, if symptoms did improve in Step 3.
  5. Rechallenges with gluten to establish their gluten threshold.

As a clinical approach, this moves us away from thinking about gluten sensitivity in all or nothing terms and addresses the issues one person at a time.


The author

, PhD is a former materials scientist turned computer programmer turned food intolerance mom. She blogs at foodconnections.org to clear up misconceptions on the nature, the prevalence, and the diagnosis of food intolerance.

References

  1. Biesiekierski JR, Peters SL, Newnham ED, Rosella O, Muir JG, Gibson PR. No Effects of Gluten in Patients With Self-Reported Non-Celiac Gluten Sensitivity After Dietary Reduction of Fermentable, Poorly Absorbed, Short-Chain Carbohydrates. Gastroenterology. 2013 Aug;145(2):320–328.e3. PMID 23648697
  2. Moore LR. “But we’re not hypochondriacs”: The changing shape of gluten-free dieting and the contested illness experience. Social Science & Medicine. 2014 Mar;105:76–83. PMID 24509047
  3. Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, et al. Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol. 2011 Mar;106(3):508–514. PMID 21224837
  4. Biesiekierski JR, Newnham ED, Shepherd SJ, Muir JG, Gibson PR. Characterization of Adults With a Self-Diagnosis of Nonceliac Gluten Sensitivity. Nutrition in Clinical Practice [Internet]. 2014 Apr 16 [cited 2014 Apr 26]; Available from: http://ncp.sagepub.com/cgi/doi/10.1177/0884533614529163. PMID 24740495
  5. Peters SL, Biesiekierski JR, Yelland GW, Muir JG, Gibson PR. Randomised clinical trial: gluten may cause depression in subjects with non-coeliac gluten sensitivity – an exploratory clinical study. Alimentary Pharmacology & Therapeutics. 2014 May;39(10):1104–12. PMID 24689456
  6. Mansueto P, Seidita A, D’Alcamo A, Carroccio A. Non-Celiac Gluten Sensitivity: Literature Review. Journal of the American College of Nutrition. 2014 Feb;33(1):39–54. PMID 24533607
  7. Sapone A, Bai JC, Ciacci C, Dolinsek J, Green PH, Hadjivassiliou M, et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC medicine. 2012;10(1):13. PMID 22313950
  8. Catassi C, Bai J, Bonaz B, Bouma G, Calabrò A, Carroccio A, et al. Non-Celiac Gluten Sensitivity: The New Frontier of Gluten Related Disorders. Nutrients. 2013 Sep 26;5(10):3839–53. PMID 24077239
  9. Sapone A, Lammers KM, Casolaro V, Cammarota M, Giuliano MT, De Rosa M, et al. Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity. BMC Med. 2011 Mar 9;9:23. PMID 21392369
  10. Carroccio A, Mansueto P, D’Alcamo A, Iacono G. Non-Celiac Wheat Sensitivity as an Allergic Condition: Personal Experience and Narrative Review. The American Journal of Gastroenterology. 2013;108(12):1845–52. PMID 24169272
  11. Carroccio A, Mansueto P, Iacono G, Soresi M, D’Alcamo A, Cavataio F, et al. Non-celiac wheat sensitivity diagnosed by double-blind placebo-controlled challenge: exploring a new clinical entity. The American Journal of Gastroenterology. 2012 Dec;107(12):1898–1906; quiz 1907. PMID 22825366
  12. Gibson PR, Shepherd SJ. Food choice as a key management strategy for functional gastrointestinal symptoms. The American Journal of Gastroenterology. 2012 May;107(5):657–666; quiz 667. PMID 22488077
  13. Gibson PR, Shepherd SJ. Evidence-based dietary management of functional gastrointestinal symptoms: The FODMAP approach. J Gastroenterol Hepatol. 2010 Feb;25(2):252–8. PMID 20136989
  14. Halmos EP, Power VA, Shepherd SJ, Gibson PR, Muir JG. A Diet Low in FODMAPs Reduces Symptoms of Irritable Bowel Syndrome. Gastroenterology. 2014 Jan;146(1):67–75.e5. PMID 24076059
  15. Shepherd S, Gibson P. The Complete Low-FODMAP Diet: A Revolutionary Plan for Managing IBS and Other Digestive Disorders. Workman Publishing; 2013. 290 p. ISBN 9781615190805
  16. Gellerstedt M, Bengtsson U, Niggemann B. Methodological issues in the diagnostic work-up of food allergy: a real challenge. Journal of Investigational Allergology and Clinical Immunology. 2007;17(6):350. PMID 18088015
  17. Bindslev-Jensen C. Standardization of double-blind, placebo-controlled food challenges. Allergy. 2001;56(s67):75–7. PMID 11298015
  18. The number of those improperly tested for celiac disease could actually be a little lower than 29% since the researchers judged the adequacy of the prerequisite gluten challenge against the current Australian guidelines (at least four weeks of 16 g of gluten per day), and this duration and amount may be higher than necessary:
    Leffler D, Schuppan D, Pallav K, Najarian R, Goldsmith JD, Hansen J, et al. Kinetics of the histological, serological and symptomatic responses to gluten challenge in adults with coeliac disease. Gut. 2013 Jul 1;62(7):996–1004. PMID 22619366
  19. Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med. 2003 Feb 10;163(3):286–92. PMID 12578508
  20. Rubio-Tapia A, Ludvigsson JF, Brantner TL, Murray JA, Everhart JE. The prevalence of celiac disease in the United States. The American Journal of Gastroenterology. 2012 Oct;107(10):1538–1544; quiz 1537, 1545. PMID 22850429
  21. Gluten-free diets: vital or vogue? The Lancet. 2012;380(9843):704. PMID 22920739
  22. Haines ML, Anderson RP, Gibson PR. Systematic review: the evidence base for long-term management of coeliac disease. Alimentary Pharmacology & Therapeutics. 2008 Nov;28(9):1042–66. PMID 18671779
  23. Godfrey JD, Brantner TL, Brinjikji W, Christensen KN, Brogan DL, Van Dyke CT, et al. Morbidity and Mortality among Older Individuals with Undiagnosed Celiac Disease. Gastroenterology. 2010 Sep;139(3):763–9. PMID 20685275
  24. Catassi C, Fasano A. Is this really celiac disease? Pitfalls in diagnosis. Current Gastroenterology Reports. 2008;10(5):466–72. PMID 18799121
  25. Collin P. Should adults be screened for celiac disease? What are the benefits and harms of screening? Gastroenterology. 2005 Apr;128(4):S104–S108. PMID 15825117
  26. Caio G, Volta U. Coeliac disease: changing diagnostic criteria? Gastroenterology and Hepatology from bed to bench [Internet]. 2012 [cited 2014 Jun 4];5(3). Available from: http://journals.sbmu.ac.ir/ghfbb/index.php/ghfbb/article/viewFile/274/227. PMID 24834212
  27. Husby S, Koletzko S, Korponay-Szabo IR, Mearin ML, Phillips A, Shamir R, et al. European Society for Pediatric Gastroenterology, Hepatology, and Nutrition guidelines for the diagnosis of coeliac disease. Journal of Pediatric Gastroenterology and Nutrition. 2012;54(1):136–60. PMID 22197856
  28. Kurppa K, Collin P, Viljamaa M, Haimila K, Saavalainen P, Partanen J, et al. Diagnosing Mild Enteropathy Celiac Disease: A Randomized, Controlled Clinical Study. Gastroenterology. 2009 Mar;136(3):816–23. PMID 19111551
  29. Biagi F, Trotta L, Alfano C, Balduzzi D, Staffieri V, Bianchi PI, et al. Prevalence and natural history of potential celiac disease in adult patients. Scandinavian Journal of Gastroenterology. 2013 May;48(5):537–42. PMID 23506211
  30. Golley S, Corsini N, Topping D, Morell M, Mohr P. Motivations for avoiding wheat consumption in Australia: results from a population survey. Public Health Nutrition. 2014 Apr 17;1–10. PMID 24739252
  31. NPD Group. Percentage of U.S. Adults Trying to Cut Down or Avoid Gluten in Their Diets Reaches New High in 2013 [Internet]. 2013 Mar. Available from: https://www.npd.com/wps/portal/npd/us/news/press-releases/percentage-of-us-adults-trying-to-cut-down-or-avoid-gluten-in-their-diets-reaches-new-high-in-2013-reports-npd/
  32. DiGiacomo DV, Tennyson CA, Green PH, Demmer RT. Prevalence of gluten-free diet adherence among individuals without celiac disease in the USA: results from the Continuous National Health and Nutrition Examination Survey 2009–2010. Scandinavian Journal of Gastroenterology. 2013 Aug;48(8):921–5. PMID 23834276
  33. Biesiekierski JR, Muir JG, Gibson PR. Is Gluten a Cause of Gastrointestinal Symptoms in People Without Celiac Disease? Current Allergy and Asthma Reports. 2013 Dec;13(6):631–8. PMID 24026574

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Leave a Comment (95) ↓

95 thoughts on “A balanced look at gluten sensitivity

  1. Sawyer says:

    Ooo, a weekend post AND from a new SBM contributor! Best of luck fighting the food cultists Laurie. Their hubris about being the prophets of sustenance is a shield that never cracks.

    1. nick says:

      I am first to say most Glutards are not really allergic to gluten, I think science is always best route.
      but this article makes it seem like they are proving something with no real evidence.
      My points below-
      May2014?…As of today we still no nothing about it, (according to leading Doc. in the field)
      “It’s going to be a while until gluten sensitivity is understood.” According to Dr. Alessio Fasano, director of the Center for Celiac Research at the Massachusetts General Hospital
      What did we learn in this article- “gluten may not be a specific trigger of functional gut symptoms once dietary FODMAPs are reduced.”
      And-
      “Gluten still had no impact on gastrointestinal symptoms, but it did induce feelings of depression. “
      ___
      Suggested an interim pathway for diagnosing gluten sensitivity, which includes:4
      1. The adequate exclusion of celiac disease. A test where you have to eat Gluten everyday for a few weeks, in order to test intestinal tissue. If you have Celiac Disease and eat Gluten you will burn off your nutrient receptors, possibly will never repair. “celiac disease can lead to osteoporosis, anemia, infertility, certain intestinal cancers, other autoimmune disorders, and an increased risk of mortality” List goes on.
      2. The exclusion of other dietary triggers, like FODMAPs or other foods suspected by the individual. Sounds good
      3. A gluten-free diet, if symptoms did not resolve or improve in Step 2. Unless you suspected gluten in step 2, if so you are allergic to the idea of eating gluten.
      4. Blinded gluten challenges, if symptoms did improve in Step 3. Feeling good gluten free, ok.. I will sneak it into your diet then. muahahaha
      5. Rechallenges with gluten to establish their gluten threshold. Give more gluten to the glutard! Muahahahahaha
      I wonder why nobody is getting registered Celiactarded..

      I do greatly appreciate the article, would love to see more from you. I apologize if I come off as rude, Just a critical thinker putting too much thought into it.

      1. Michael Busch says:

        Find better insults. The ones you are using are based off of ableist slurs, and are not cool.

        1. nick says:

          You totally missed point.

          I am proud to be a glutentard, if you like you can call me celiac diseased. I prefer glutentard.

          Was not trying to insult anyone and no I did not invent this word. I still here it in school on a regular basses. Could see how it would sound offensive, sorry about that.

          M

      2. Chris says:

        Why do you think insults are a valid form of discussion? Do you think they are a valid form of evidence?

        1. nick says:

          No was not trying to insult.

          Evidence is what I am looking for.

          Please do correct me if any of what I said is wrong. I will not use the term glutentarded any more. But being one I prefer it over diseased.

          I see it totally pissed off a few readers, I wish I could take it back and change a few words.

          But seems like nobody has anything to say except: “that is a bad word”

          M

          M

          1. Chris says:

            Some of us here have children with disabilities, and we do not take kindly to the use of the word “retard.” As you can see it totally distracted from the content of your comment.

            Here is some advice you may have heard in your English or writing classes: consider your audience. Think about who they are, and the level of discourse that is occurring in the comment stream.

            Also, the above article did differentiate between celiac and food allergies.

            1. nick says:

              Thank you Chris,

              I should have known better, I am deleting the word from my vocab. I take care of my little brother who is very autistic, I am dumb for not being careful with words.

              back to point at hand-

              They do state the difference in the two food allergies, just did not like how Doctors quotes were “it may not” seems like they have nothing so far.

              “gluten may not be a specific trigger of functional gut symptoms once dietary FODMAPs are reduced.”

              And writer making it sound like it is a myth that gluten allergies exist. then a doctor says it does make people depressed. (with evidence via controlled test) seems like they are allergic to gluten right. maybe no farts but not good to keep in diet.

              “Gluten still had no impact on gastrointestinal symptoms, but it did induce feelings of depression. “

              1. In common usage, ‘science’ is thought of as a collection of facts on certain topics like biology, chemistry, etc. But science is actually a process for answering questions about the world. Gray areas can exist for long periods of time. Unfortunately, when it comes to medicine, many people are not comfortable with this kind of uncertainty. In contrast, alternative medicine always claims to have all the answers, and this is its appeal.

                Right now, the state of affairs with gluten sensitivity is this: Different researchers have their hunches, based on their own experiences, on whether or not it exists. However, there has been no high-quality study to show this either way. All of the studies so far have their limitations. Also keep in mind that results need to be replicated by other research groups before they are completely accepted.

                The situation is complicated further by that fact that gluten sensitivity could be any or all or none of the three subtypes given in the article.

          2. Richard McCarter says:

            I agree with these others Nick or M or whatever you call yourself.

            If you are thinking Why am I so sick from gluten, I have the answer.

            You are this way because god knew you were going to say mean things like this. You are paying the price for not accepting god and his will for you. Jesus still loves you but he and god are getting upset and you will burn in hell!!!

            1. mouse says:

              - pretty sure* there is a more logical explanation.

              *99.9999999999999… positive

            2. duma says:

              and odin will send you to hel for not feeling bad from gluten, because beer is for sissys, real vikings only drink mead!

              *makes just as much sense*

  2. Thor says:

    Yay, a Saturday post! And on such an interesting topic. Welcome on board, Laurie. Impressive, detailed work on the article; looking forward to future contributions. And to perusing your website.

  3. MTDoc says:

    50 years ago, much of this was lumped under “functional bowel disease” and treated symptomatically, albeit rather unsuccessfully. As we continue to learn more about the way our gut functions, I look forward to much more successful management of these common complaints.

    One thought. Any change in diet in the so-called normal person produces a change in digestive function, and requires a period of time to adapt. Every pet owner knows this also. I would think this might really complicate studies using diet changes, in as much as change alone has a physiological effect.

    This was an interesting presentation and I look forward to the answers to the many questions that it raises.

  4. Motherofmultitudes says:

    We have lived the testing dilemma with my now 10 year old. As a late infant/early toddler, he fell of the growth chart. All his blood work checking for nutritional status (pre albumin, vitamin deficiencies) were awful. He had nonstop diarrhea and his hair was falling out and he stopped growing in height. His blood tests— both genetic and serologic— for celiac’s came back positive. His pediatric GI saw no reason to confirm with endoscopy so we started a gluten free diet for him the day of test results and within 6 weeks I started to have a new kid. The diarrhea stopped. Then he started gaining weight and growing. His prealbumin and vitamin levels began to normalize. This all happened within 3 months. He was 20 months old at initial diagnosis, given by a pediatric GI at WRAMC.

    His diagnosis was accepted at every duty station we were assigned until this one. I was shocked when the ped. GI here said that since he didnt have a positive endoscopy, we couldn’t “really” know he had celiac’s, and because GF is so “restrictive” she wanted him put back on gluten for 3-4 months so she could do an endoscopy.

    Given the year of pure misery he endured before his celiac diagnosis there was no way on earth I was going to do that to my child four straight months so she could satisfy herself it was “really necessary.” That was the first and last time we saw her. We found someone else that is satisfied with the positive testing and history he has as confirmatory enough for his celiac diagnosis.

    1. MTDoc says:

      A great example of the sometimes conflict between purist medicine and practicality. When he’s 18 he can decide if he wants to undergo further study or just continue the diet he accepts as normal for him. Since you are doing just fine in the meantime, the quest for a “diagnosis” can certainly wait until we know more about this whole area of medicine. Having watched medicine evolve for six decades, I have seen many diagnostic criteria change over time, and if a “diagnostic code” is required for some piece of paperwork, there may be easier ways of obtaining it down the road a bit.

      As for paperwork and codes, you don’t want to get me started on that. IMHO, you have made a wise choice.

  5. darkwing says:

    In 1987 after a lengthy (2+ years) period of clear and significant symptoms as seen by my then GP and the referred Gastro-doc, and an endoscopy and biopsy of the lower bowel, I was diagnosed with “chronic proctitis”, which is a diagnosis, but not a useful one. I suffered almost constantly for 25 years. Then, three years ago in consultation with my GP, who I have been with for 20 years, I decided to try a GF diet. I was very skeptical. I am not, and never have been, a food (or anything else) faddist. In a week I was symptom free, and have continued to be so for the three years since.

    Is it possible this is something other than gluten sensitivity, sure, but if not eating wheat cures me, I don’t care (much) about the details.

    1. MTDoc says:

      There is a lot we do not know about this subject, and possibly some of us old farts are not as dumb as some may think. It may well be something other than gluten sensitivity that is causing your problem, but until we know exactly what it is the most important thing is that we have some way to control it. Kudos to you and your GP. (100% bias on my part). As I said before, Like all science, discoveries open doors to many new discoveries, and this area is relative virgin territory. Science will eventually fill in the gaps, but in the meantime “we” must take care of the patients.

    2. Lacri says:

      Wheat contains FODMAPs, so if you follow a gluten-free diet (ie a wheat-free diet) then you are also excluding a significant (if not the only) source of FODMAPs. If that works for you, great, but the details may be important to others.

  6. Daniel Falcon says:

    What is “FODMAP”?

  7. KayMarie says:

    From wikipedia

    <blockquote?FODMAPs are short chain carbohydrates (oligosaccharides), disaccharides, monosaccharides and related alcohols that are poorly absorbed in the small intestine. These include short chain (oligo-) saccharide polymers of fructose (fructans) and galactose (galactans), disaccharides (lactose), monosaccharides (fructose), and sugar alcohols (polyols) such as sorbitol, mannitol, xylitol and maltitol.

    The term FODMAP is an acronym, deriving from "Fermentable, Oligo-, Di-, Mono-saccharides And Polyols."

    1. KayMarie says:

      Blockquote and reply location fail *facepalm*

      1. Sara says:

        Thank you for this clear outline of the current research. I have recently been diagnosed as FODMAP and yep it makes a big difference. When I’m disciplined enough to stay on it! Which means I can say from experience that levels matter. A little bit of something on the ‘off’ list can be fine, but keep on with a little bit of this and a little bit of that and you’re back in trouble.

  8. Stephen H says:

    Don’t get into my habit of confusing FODMAP and BODMAS.

    1. Jason says:

      Or BEDMAS

  9. lkr says:

    I’m sure gluten allergies exist, in fact I know one or two people who suffer from this and AREN’T nuts…. But from an evolutionary perspective, it’s hard to believe that it could affect more than a small percentage of the American population. For the past several thousand years, anyone in Europe/western Asia who couldn’t tolerate wheat and barley protein [or sugars if that's also involved] would be at a huge selective disadvantage. As with adult lactose tolerance in dairying regions, there should have been a selective sweep favoring efficient utilization of grain.

    1. MadisonMD says:

      I’m sure gluten allergies exist, in fact I know one or two people who suffer from this and AREN’T nuts

      As the article says, it does exist. It is known as celiac disease with a prevalence of 1/56.

      1. Graham says:

        Sadly, thanks to savy marketing and peddlers of woo, most people are convinced that the ‘real’ prevalence is somewhere in the region of 1/10 or possibly even as low as 1/3.

      2. Michael Busch says:

        Celiac is _not_ an allergic reaction. It’s an autoimmune disorder caused by the triggering of a genetic predisposition where human leukocyte antigen receptors on cells in the small intestine have an affinity for binding to certain parts of the proteins in gluten. Allergic hypersensitivity reactions use a different set of receptors and are generally far faster-acting – effects of exposure manifest in minutes to hours, as compared to several weeks for celiac in adults.

        Allergic reactions to a wide range of compounds in wheat do exist, and often require a different avoidance protocol than that for those of us with celiac. e.g. I should avoid wheat, rye, and barley but can eat oats; someone with a wheat allergy might be fine eating barley or have problems with oats. And, as has been detailed in the original post, no one has yet demonstrated a non-allergic and non-celiac specific reaction to gluten.

        The prevalence of celiac ranges widely from one country to another, due to founder effects on the genetic predispositions – from ~0.1% (e.g. Japan) to ~5% (Western Sahara). US-wide prevalence is about 1%. The 1-in-56 prevalence quoted above was for a sample of ~3000 people presenting with gastrointestinal symptoms to health-care providers in the US.

        Prevalence goes up quite dramatically in first-degree relatives of people with celiac. That is why I was diagnosed within 12 months of the onset of symptoms – my mother has celiac, so my gastroenterologist knew what to look for.

        1. mouse says:

          @Michael Busch (or anyone else)

          I’m wondering, is celiac unique in being a systemic auto-immune reaction to a particular substance or are there other auto-immune diseases that have a documented unique substance as a trigger.

          I can’t think of any others, but there’s, like, 4 zillion auto-immune diseases and I can only think of 4 or 5.

          1. Michael Busch says:

            There is drug-induced autoimmune hemolytic anemia, where the autoimmune reaction to exposure to specific compounds is for the immune system to attack red blood cells. But my understanding is that is not usually a chronic condition like celiac is.

            1. mouse says:

              Thanks!

      3. nick says:

        Also it will make one depressed, even if not celiac diseased.

        as they state-
        “Gluten still had no impact on gastrointestinal symptoms, but it did induce feelings of depression. “

        Seems like they are focused on debunking a little to hard, overlooking the fact that allergies can be found in just about everything, each person that has one is different.

        Reason .. Gens or what have you, also one can make an allergy to anything. Just go on a strict diet of it. I know someone allergic to fruit from a fruit diet.

        1. Harriet Hall says:

          “one can make an allergy to anything. Just go on a strict diet of it”

          Citation, please.

    2. Calli Arcale says:

      Considering how relatively uncommon lactase persistence is, despite our very widespread adoption of dairy products, I’m not sure we can assume that evolution should’ve weeded out celiac disease. When my cousin was diagnosed (six months old, first exposure to gluten ever in her life, and she was so sick she required hospitalization — it was about as obvious a case as one can get), the doctors said it was a recessive trait that caused it. I’ve subsequently come to the conclusion that this was probably an assumption, not actual science, but it does seem to run more strongly among certain populations, such as Scandinavians. Scandinavians do eat a lot of bread, but I wonder if a tendency towards celiac disease is why potatoes were accepted so enthusiastically in northern Europe when they arrived from the New World.

      1. Michael Busch says:

        Most people who develop celiac have single copies of particular alleles of two of the relevant genes. Should a person have two copies of those alleles, one from each parent, then the probabilities of having celiac and of having particularly severe forms of it are especially high. e.g. http://informahealthcare.com/doi/abs/10.1080/00365520600789859 .

        Perhaps that is what your cousin’s physicians were referring to?

    3. Michael Busch says:

      Population genetics are such that neutral and even slightly-negative-fitness mutations are entirely capable of spreading, via founder effects and genetic drift. And adult-onset celiac is not particularly negative in terms of evolutionary fitness. Historically, people who developed celiac generally lived long enough to have a normal number of children and grandchildren, even if their life expectancies were somewhat shorter than average.

      Evolution does not actually adhere to a strict-adaptationism model.

      1. AdamG says:

        True, but don’t forget that risk alleles for Celiac are not necessarily derived alleles. They may in fact be ancestral alleles that, through drift or selection, rose to a moderate frequency before a change in environment caused them to increase celiac risk.

        For more on this, see: http://www.ncbi.nlm.nih.gov/pubmed/23936230

    4. WilliamLawrenceUtridge says:

      I’m sure gluten allergies exist, in fact I know one or two people who suffer from this and AREN’T nuts…. But from an evolutionary perspective, it’s hard to believe that it could affect more than a small percentage of the American population. For the past several thousand years, anyone in Europe/western Asia who couldn’t tolerate wheat and barley protein [or sugars if that's also involved] would be at a huge selective disadvantage. As with adult lactose tolerance in dairying regions, there should have been a selective sweep favoring efficient utilization of grain.

      It could be akin to sickle cell disease, where there is some selective advantage that is not as obvious as its disadvantages.

      Not to mention, the breeding of high-protein flour is a relatively recent innovation I believe. Could be wrong.

      1. brewandferment says:

        I haven’t looked it up but I believe you may be wrong about high protein wheat–some of the older grains like kamut for one, are touted as being higher in protein than newer wheats. Spelt, maybe too?

  10. Alia says:

    My mother-in-law has been diagnosed with celiac in her 50s, confirmed by duodendal biopsy. The problem is – she simply cannot keep on gluten-free diet. She buys all the special bread, rolls and pasta, she uses corn or potato starch to thicken soups and sauces – but she loves sweets and when cakes and cookies are concerned, she claims gluten-free ones are not even a close match. So she will see a cake and eat it, “just a slice” and then she will complain of pain and cramps. She’s like a child in this respect, really, a 60+ child. And I’m just tired of it.

    1. Calli Arcale says:

      Has she tried flourless cakes? They’re not the same . . . to me, they’re better. ;-) I don’t have gluten sensitivity, but I am a huge sucker for a chocolate torte. Warning: this is gluten free, but really not particularly healthy. ;-) The recipe I like is this (adapted from a recipe that Williams-Sonoma put out about 25 years ago):

      INGREDIENTS:
      5 eggs, room temp, preferably extra-large
      2 sticks of butter, room temp, cut into pieces
      1 1/3 cup sugar
      1/2 cup water
      8 oz unsweetened chocolate, chopped
      4 oz semisweet chocolate, chopped

      Preheat oven to 350 degrees. Grease a 9″ cake pan. Cut out a 9″ round from parchment paper and line the bottom of the pan. Grease this as well. (I use a springform pan, but folks use a lot of different things successfully for this. Original recipe called for putting this in a water bath, but I don’t bother, which is possibly why mine usually crack.)

      Put the water and a cup of sugar into a saucepan. Bring to a boil and stir until sugar is completely dissolved. Remove from heat. Add the butter and chocolate, piece by piece, stirring until the residual heat has melted them completely. Resist the temptation to start eating this like soup; it’s awesome, but you *will* regret it. ;-)

      In a large mixer bowl, beat the eggs and the remaining sugar together until slightly thickened. Fold the chocolate goop into the egg goop. Pour this into the cake pan and put into the oven and bake until it looks reasonably dry but is still wobbly, about half an hour. Don’t bother testing with a toothpick; it will never come clean.

      After removing from the oven, unmold. First put plastic wrap over the top of the cake to protect it. Then place a flat plate on top of the cake pan and invert. Then, peel off the parchment paper from the bottom of the cake. Put your serving plate on top and invert again. Peel off the plastic wrap. Let cool to room temperature, or serve warm. If you let it cool, you can optionally dust with powdered sugar for a decorative look.

      This is 100% gluten free, pretty easy to make, and absolutely sinful. ;-) It is very rich, however; I’ve found this cake can serve a dozen people easily, and may even have leftovers at that point because it’s so rich. It will keep for a few days if you cover it, but is best the first day.

      1. Alia says:

        Thanks for the recipe, I will try it. I also bake for her a walnut cake, which is made basically with ground walnuts, egg yolks and sugar. And then, there is the cheesecake, also gluten-free. But the problem is that she would go into a bakery, see all those pretty, pretty cakes and buy them. For her husband, as she claims. And then she cannot stop herself. Her latest gastrologist talked some sense into her, it seemed for a while – but we met last weekend and she was eating cake again.

        1. WilliamLawrenceUtridge says:

          America’s Test Kitchen also published a gluten-free baking book recently.

          I won’t shill for Pfizer, but I will shill the crap out of ATK.

  11. theLaplaceDemon says:

    Potential celiac disease describes cases where serologic and genetic markers for celiac disease are positive but the biopsy is negative.22

    Does anyone know what the justification for this is considered “potential”? Are there large numbers of people with serologic and genetic markers but no symptoms?

    1. Potential celiac disease has symptoms. Latent celiac disease has “positive serology and some degree of villous atrophy but no symptoms”. Here is the reference:

      Catassi C, Fasano A. Is this really celiac disease? Pitfalls in diagnosis. Current gastroenterology reports. 2008;10(5):466–72.

      Another interesting point from that article is this:

      “The diagnosis of CD is easy in cases with symptoms, typical CD serology, and unequivocal villous atrophy in the small intestine. However, the decision to begin the demanding and lifelong treatment of CD, the GFD, occasionally may be difficult. Patients often suffer from only subtle symptoms, if any. Borderline shortening of villi is common, making the histologic diagnosis questionable. An increase in IELs [intraepithelial lymphocytes], which is typical even in early-stage untreated CD, is not specific.”

  12. Hi all. I think I need to make a clarification with regards to the overlap between celiac disease and gluten sensitivity.

    In some minds (like Fasano’s group), there is a clear distinction between the two conditions. To quote:

    “We propose as a definition of GS [gluten sensitivity] those cases of gluten reaction in which both allergic and autoimmune mechanisms have been ruled out (diagnosis by exclusion criteria). More specifically, these are cases with negative immuno-allergy tests to wheat or negative CD [celiac disease] serology (anti-EMA and/or anti-tTG); where IgA deficiency has been ruled out; with normal duodenal histopathology; with the possible presence of biomarkers of native gluten immune-reaction (AGA+); with clinical symptoms that can overlap with CD or WA [wheat allergy] symptoms; and patients who show a resolution of symptoms when started on a GFD, implemented in a blinded fashion to avoid a possible placebo effect of the dietary intervention.”

    One problem is that we have not seen the details on how they conduct their gluten challenges.

    But the overlap I’m also thinking about is coming from the self-diagnosed (those with test results who are possibly not satisfied with the conclusions drawn by their doctor) and from doctors who may or may not be applying the subtleties of celiac diagnosis correctly or who have to come up with their own interpretation of potential celiac disease because there is no consensus on what to do about it.

    1. Here’s that reference on gluten sensitivity:

      Sapone A, Bai JC, Ciacci C, Dolinsek J, Green PH, Hadjivassiliou M, et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC medicine. 2012;10(1):13.

    2. Notice how I try very hard to be diplomatic? :)

  13. Pete A says:

    Many thanks for the article, Laurie. It has increased my determination to exercise more humility and empathy during my (sometimes too highly-vocal) promotion of scepticism, critical thinking, and science.

  14. Su says:

    Finally! This is the information I have been looking for. My GP diagnosed me as having fibromyalgia, which is tantamount to labelling me a hypochondriac. He freely admitted he regards fibromyalgia as a mental health problem. I manage pain with drugs and yoga. I may be one of the undiagnosed coeliacs but I am terrified of a. Having to endure the gluten diet and b. The biopsy. I would like to try a low fodmap diet but my meals are all prepared by someone who would find that too onerous. My hair is falling out so vanity may be the only thing that will finally force my hand.

    1. Hi Su. Please see a specialist. The low-FODMAP diet was only developed to relieve the gastrointestinal symptoms of irritable bowel syndrome. It is not meant for celiac disease – for celiac disease, the only treatment is a strict gluten free diet.

    2. mouse says:

      @Su – Just my two cents. Fibromyalgia is often treated by a rhuematologist, sometimes a neurologist. If your doctor called you a hypochondriac, then he is confused, because they are two completely different diagnoses. Fibromyalgia is not in the DSM (manual of mental disorders) the criteria for fibro is written by rheumatology for I’m not sure why your doctor would regard it as a mental health disorder.

      The treatment of fibro is multidisciplinary – a combination of medications, exercises, cognitive behavior therapy along with addressing co-morbid conditions (sleep disturbances, other rheumatology conditions, depression, etc). The medications approved to treat fibro are sometimes used in mental disorders, but they are also used to treat diabetic neuropathy.

      One might say there is a “mental health” aspect to all pain, in fact all illness. It’s referred to as the biopsychosocial model. The wiki page is pretty interesting. This is probably why CBT may be helpful with fibro, along with many other chronic pain or chronic health conditions, it may help a patient develop new coping skills that can be beneficial in treatment.

      So – I’m sorry for the long winded response, but I don’t think it’s accurate to call fibro a “mental health disorder”. Not sure if you need a new doctor, they were just having a bad day or you misunderstood them.

  15. Jamie says:

    My wife suffers from IBD and has attributed it to Gluten. The diet provides relief. IBD seems to be much more common among my peers (30 yrs old) than older generations. I really think it’s tied to our microbiomes. Drugs have changed our compositions to such an extent that it appears a relatively large portion of the population has lost a critical microbe. I’d like to see studies that begin comparing flora as the next step in advancing this research.

  16. Iorek says:

    We did low FODMAP for a while last year when my daughter had odd, IBS-but-not-really symptoms. One of the points is that it is low gluten not no gluten so for instance spelt pasta and sourdough spelt bread is fine. The fruit and veg restrictions were the hardest for us, but we worked with it. The lactose free milk is just plain nasty. Some cheese is okay though so all was not lost.

    Made no difference to her, though we do now have spelt pasta when available. Interestingly, home made white bread like pitas (with flour, yoguhrt, yeast, water and a bit of salt and sugar) are better tolerated than commercial breads, which is anecdata for it being something other than the gluten that causes the trouble. I was interested in the material about gluten and mood-how many of us reach for a cake or similar when tired and stressed, and put down an upset tum after to the stress, when it might be the sugar or something else in the cake?

    Anyhow, in the end she was diagnosed with h.pylori and is cured and back to normal. It’s a complex area and great to see more work happening.

  17. Susan says:

    I am curious if any studies have been done to show any adverse affects from going on a strict gluten free diet, as far as malnutrition or stunted growth in children. Do supplements and certain foods to substitute the lack of vitamins that go along with wheat products help ensure that one is getting proper nutrition?

    1. KayMarie says:

      In patients with celiac or standard issue humans? Because celiac in children can cause nutritional deficiencies and growth problems on a full range diet.

      That being said pubmed seems to have a fair number of studies on the nutrition issues with gluten free diets.

      1. Susan says:

        With non-celiac patients… for people or parents of children who choose to go on a gluten-free diet irrespective of any formal diagnosis.

        I absolutely agree and empathize with those who are true celiacs and would never question their restrictive diets. I do, however, question the nutritional deficiencies that may be occurring in children who are forced to be on gluten free diets by their parents (in addition to dairy free), especially if they have never been diagnosed with an allergy or intolerance.

        1. KayMarie says:

          Did a quick jog around Pubmed and didn’t find a good answer.

          Seems the main issue is with fiber long term and a fair number of the gluten free diets only resolved some of the nutritional issues the people with Celiac Disease had from before the initiation of the diet, but also didn’t add any new ones.

          FWIW on the useless anecdote front from the people I know with Celiac Disease, there doesn’t seem to be a lot of issues with eating a healthy diet overall (at least back before a lot of the processed gluten-free replacement junk foods came out) either as adults or kids. And most of the “I’m gluten sensitive” folks I know sneak enough wheat into their diet from their just a couple of bites won’t hurt philosophy (that personally drives me nuts having seen what tiny amounts from cooking wheat containing foods in the same kitchen do to the people I’ve known with Celiac Disease) that they probably aren’t missing much nutrition.

          My personal opinion is probably going to be a lot depends on where along this scale the parent is: healthy foods make for healthy living vs many foods are evil and we must cut out as much of the evil as we can. Because some people get really food phobic when cutting foods out of the diet and tend to cut out even more foods over time trying to find the one food in all the world that they believe is not causing the problems.

          I do think the parents on the more food is evil end are going to cause problems no matter which food is the big bad for this season’s episodes.

          1. Susan says:

            I’m sure much further research is needed in order to understand all of the nuanced effects that can come with eliminating and or adding foods to one’s diet, especially since there are so many factors and combinations of foods/nutrients/vitamins that cause or not cause certain aliments.

            I am concerned because I have a friend who has gone to the side of “many foods are evil” front and has put her children on very strict diets, including only organic fruits and vegetables and the elimination of all wheat, dairy, and most meats. So as a result she uses supplements and microbiotics in order to compensate for the lack of nutrients. From my observations, the children have had issues with cavities in their baby teeth (from lack of calcium? because I don’t think the supplements are absorbed as well as if you actually eat calcium), they don’t seem to be growing as fast as their peers, and they are *constantly* hungry. I could be over anxious with what I see, and I hope I am… but I really feel she has gone extreme with her growing children that can not only cause physical ailments but mental ones as well by giving them food complexes and eating disorders.

            Thank you for your comments.

            1. KayMarie says:

              Hard to know about the baby teeth, I had cavities in them, but enough calcium for enamal on my permanent teeth that didn’t get a cavity until well into adulthood.

              However, the whole seem to not be doing as well as other kids and always hungry does sound bothersome. I think sometimes people forget kids aren’t little adults and what we can survive on may not be ideal for them.

              But generally nutrients are best absorbed from food rather than supplements, but it is hard to convince people of that (and food, especially fruits and veggies have a lot of other interesting phytochemicals that may be good for health in a myriad of ways).

              Hopefully they are just naturally small for their age and it will all work out in the end. Although it does sound like I’d be tempted to feed them when Mom wasn’t looking.

            2. mouse says:

              I’m not any sort of expert, but did your friend eliminate fluoride as well? Anti-fluoride myths are common and non-fluorinated toothpaste and non-fluorinated water are readily available and will lead to more cavities in children.

              This wouldn’t explain poor growth or abnormal hunger. IME Kids DO go through hungry spells, where they seem really hungry and eat a lot. But if it seems perpetual and intense,that doesn’t seem good, difficult situation.

              1. Susan says:

                mouse, yes fluoride toothpaste has been eliminated as well. So that is probably more of a factor with the teeth. They still drink water from the tap, which is surprising to me. My friend is also into the oils, yoga, and chiropractors. *sigh*

                But it doesn’t stop there. She also see’s a “DAN” doctor that analyzes their blood and other bodily fluids ever few months to test for metals and vitamin levels. This is where she gets prescriptions for the vitamins and microbiotics. So a little is given here, a little there.. and it’s almost like they are lab rats. “Let’s see if this combination works, and we will test their levels again in a few months.” What a racket.

                I do not have any expertise in this area and I apologize for being a layperson, which is why I appreciate to have found such a respectable blog with doctors who use science and not anecdotal evidence. Nonetheless, my example seems a bit anecdotal and I do not have all the facts before me. The hunger thing just really worries me. There are four children and the youngest two seem to be tired all the time and the most hungry. This would coincide around the time she chose to begin these kinds of diets – when the youngest were babies. So immediately after lunch they want to snack and they either go for potato chips or some processed gluten-free snack filled with sugar. They are not super skinny or ribs showing or anything… and they could just be short by genetics.. I don’t know.

                I don’t want to give the impression that my friend is purposely abusing her kids, because I do think she truly believes what she is doing is right. She has just fallen victim to almost every pseudo self diagnosis she could find on the internet.

                Now I’m rambling. I simply question the whole gluten craze and although it probably does make a lot of people feel better going on this diet because you eliminate lots of pastas and breads… but as an adult one would be able to sneak a little gluten in there whereas a child such as my friends are at the mercy of their parents’ wishes. Hopefully all that will change once they become rebellious teens.

              2. KayMarie says:

                So immediately after lunch they want to snack and they either go for potato chips or some processed gluten-free snack filled with sugar.

                See that is what bothers me with some of the fad nutrition ideas. It is OK as long as X isn’t in it.

                Highly processed junk food is still highly processed junk food even if you take something out that sounds bad and add in something that sounds good.

                An RN friend of mine got on me about my emergency breakfast (pop tarts) hey, they keep forever and I can grab and go. I quipped that I eat those because most of the “healthy” things that are the same convenience are really just as processed and just as bad for you and if I’m going to eat junk I might as well not fool myself and eat the real junk. :-)

                I suppose the all organic versions of fruits and veggies are too expensive to keep around for the snacks/deserts or something. That was always my folks response to you are still hungry, here have an apple or a carrot. Even more fun was being let loose in my Aunt’s garden to graze on raspberries and peas in the pod, yum!

              3. Susan says:

                Exactly, KayMarie. When I questioned my friend about all of the added ingredients and multiple processes with the gluten free snacks, I couldn’t get a straight answer. Only that gluten was the be all end all of evil….and was directed to read “Wheat Belly.”

                The children aren’t allowed to eat Cheerios and milk for breakfast, but they can have gluten free muffins made from a box with at least 30 ingredients I had never heard of.

                And you are absolutely right, if you are going to eat something that isn’t healthy to begin with, don’t go for the over processed alternative, i.e., margarine or fat free chips. Might as well just have the fat. :)

              4. KayMarie says:

                I don’t think she read the book correctly (and a lot of it is about weight loss so I’m not sure if it is appropriate for kids anyway).

                http://www.wheatbelly.com/articles/WBFAQs

                Unless of course he has totally different info on the webpage than he has in the book. :-)

                So does it mean going gluten-free?
                Yes, but do not eat gluten-free foods! Let me explain…

                What can you eat on the diet you advocate?
                Eat real, natural foods such as eggs, raw nuts, plenty of vegetables, and fish, fowl, and meats. Use healthy oils like olive, walnut, and coconut liberally. Eat occasional fruit and plenty of avocado, olives, and use herbs and spices freely…certainly do not frequent fast food, processed snacks, or junk foods

              5. mouse says:

                @Susan – well, the DAN doctor is not a good sign. It really sucks seeing friends make poor decisions especially with their kids. Ultimately, you end up making a choice whether you think you would be more help to the kids keeping your foot in the door and diplomatically trying to moderate the extreme approach or make a dramatic statement that might possibly get you booted as a friend. Depends upon the relationship, I guess.

                This “So immediately after lunch they want to snack and they either go for potato chips or some processed gluten-free snack filled with sugar.”

                It guess it all depends upon how this is playing out. It could be the “saving room for dessert” phenomenon. I find if I feed my kids a healthy lunch or dinner that isn’t top on the list of their favorite foods, (say they get minestrone soup or grilled chicken breast with rice and salad) they will eat the minimum amount, saving room for the opportunity to eat the chips or treats after a “decent” interval, especially if they suspect they can get away with it. If this is what is happening then maybe it’s not great, but it’s a typical parenting struggle with balancing “healthy” foods and junk foods. But still concerning if they are getting less than adequate protein, fats, calcium or b12(from meat or eggs). Of course the standard U.S. diet is heavy on protein, so even with less protein than average it could be fine.

                If on the other hand in my inexpert opinion, if they are eating a good amount for lunch or dinner, then going for snacks immediately because they are really hungry again (not just want some junk food), that could be more concerning, to me. Or if it seems like they will eat anything, whenever, or they are chewing on ice or eating non-food substances like dirt or chalk (not in toddlers) then that might be a symptom of anemia.

                Kinda hard to know what’s right in that case. If they were over at your house all the time, you’d have the opportunity to just feed em up a bit, but not without mom finding out, because it’d be unhealthy (and unrealistic) to expect the kids to keep an ongoing secret from their mom.

                :(

              6. Susan says:

                KayMarie, I believe my friend completely glossed over the part about avoiding processed gluten free foods. Funny how she has never mentioned this part to me. Her problem is that she still wants her kids to enjoy cakes and sugary snacks and the only way to do that is use these boxed products that are incredibly expensive.

                mouse, the children could very well be saving room for snacks that yes, they do know they are going to get. And I don’t believe they are terribly starving. As you mentioned, the only real concern I have is them getting adequate vitamins and minerals from grains, and also iron from meats and calcium from dairy products. More research is needed from what I gather from pubmed…. concerning the consequences of losing those essential minerals and vitamins from going gluten/dairy free. I think most of the supplements aren’t absorbed properly and it requires eating a TON of vegetables and other foods to get the appropriate amount of calcium. The DAN doctor is a quack. He was trained as an emergency room doctor and suddenly found a niche market with treating children via supplements without any sort of pediatrics training.

                Thanks again for both of your comments…they have relieved a lot of my worry.

              7. KayMarie says:

                I’m kinda surprised a DAN type doctor would be OK with feeding lots of sugars, but maybe they haven’t fallen into that pit of woo.

              8. simba says:

                KayMarie- it’s probably agave or labelled ‘natural’ and that doesn’t count. An acquaintance with diabetes came in all excited announcing to everyone she’d found some lovely sweets with no added sugar. Of course the first ingredient on them was ‘grape juice’ or grape extract or some such. The nutrtitional analysis showed it was basically pure sugar. There goes her diabetic control.

    2. Calli Arcale says:

      Anecdata: my cousin is on a strict GF diet, and has been since infancy due to severe celiac disease. She’s actually taller than her normal-diet sister. ;-) Obviously, the diet didn’t make her taller; both women are the heights they are because of genetics — the shorter sister is the same height as I am, and basically takes after her dad’s side of the family in that department, while her sister takes more after her mother’s side — although she is the first celiac patient identified in the family, which is interesting, given it’s supposed to be genetic.

  18. Grifter says:

    I had a bunch of stomach issues my whole life, and, at a point a little over a year ago, it was suggested that I try going gluten-free (not by a doctor, since those cost money). Doing so resolved like 75%+ of my issues. I accidentally had wheat (little known fact: all Idahoan powdered mashed potato flavors that they sell in my area except for one are gluten-free) and got sick for 2 days. This leads me to believe that it is some kind of sensitivity, but I don’t think I have celiac, just because I don’t seem to be as terribly sensitive as those I know who have actually been diagnosed–”contaminated” foods like gluten free pizza from Domino’s don’t seem to send me reeling. I do have straight-up terrible teeth, which, according to the internet is apparently a symptom of gluten problems (and everything on the internet is true, amiright?)

    My issue is that my insurance is terrible, which makes me hesitate on trying to see somebody–anything I try to do is going to be as out-of-pocket as the company can get away with under the ACA. So, not to be dumb, but does anyone have an idea as to how likely am I to be able to find out what’s actually going on with my stupid GI tract, given the state of knowledge of it all?

    What occasional research I’ve done has made me feel that, barring a quick definitive diagnosis, I’m going to wind up in the same boat I am now–that of “Idunno, just don’t eat gluten”. I’m a vegetarian, too, and that I’ve been going this far into the hippie food wilderness makes me concerned about nutritional deficiencies.

  19. mouse says:

    I’m very late to the party, but I just wanted to add how much I enjoyed this article, such a nuance and detailed review of the topic.

    I have a couple of closer friends who don’t eat gluten products strictly. One is gluten sensitive, one started out gluten sensitive but then later explained he had celiac. I’m not sure that he was ever formally diagnosed. The both have physical symptoms and report feeling depressed/irritable when they eat gluten.

    I have been concerned, particularly the one with gluten sensitivity. She is a reasonably anxious person (like me, but in different ways) and I was concerned that the gluten avoidance would lead to other food avoidances, or more risky alternative remedies.

    All in all, I haven’t really felt like I had a good approach for talking with her on the topic. I feel like I can really use a lot from this article. Thanks for the fresh perspective! Hope to hear more in the future.

  20. nick says:

    I am first to say most Glutards are not really allergic to gluten, I think science is always best route.
    but this article makes it seem like they are proving something with no real evidence.
    My points below-
    May2014?…As of today we still no nothing about it, (according to leading Doc. in the field)
    “It’s going to be a while until gluten sensitivity is understood.” According to Dr. Alessio Fasano, director of the Center for Celiac Research at the Massachusetts General Hospital
    What did we learn in this article- “gluten may not be a specific trigger of functional gut symptoms once dietary FODMAPs are reduced.”
    And-
    “Gluten still had no impact on gastrointestinal symptoms, but it did induce feelings of depression. “
    ___
    Suggested an interim pathway for diagnosing gluten sensitivity, which includes:4
    1. The adequate exclusion of celiac disease. A test where you have to eat Gluten everyday for a few weeks, in order to test intestinal tissue. If you have Celiac Disease and eat Gluten you will burn off your nutrient receptors, possibly will never repair. “celiac disease can lead to osteoporosis, anemia, infertility, certain intestinal cancers, other autoimmune disorders, and an increased risk of mortality” List goes on.
    2. The exclusion of other dietary triggers, like FODMAPs or other foods suspected by the individual. Sounds good
    3. A gluten-free diet, if symptoms did not resolve or improve in Step 2. Unless you suspected gluten in step 2, if so you are allergic to the idea of eating gluten.
    4. Blinded gluten challenges, if symptoms did improve in Step 3. Feeling good gluten free, ok.. I will sneak it into your diet then. muahahaha
    5. Rechallenges with gluten to establish their gluten threshold. Give more gluten to the glutard! Muahahahahaha
    I wonder why nobody is getting registered Celiactarded..

    I do greatly appreciate the article, would love to see more from you. I apologize if I come off as rude, Just a critical thinker putting too much thought into it.

    1. mouse says:

      …wow I haven’t heard anyone insult a person with a derogatory reference to “retarded” since middle school in the 1970′s, well except for Anne Coulter.

      You and Anne Coulter – shining examples of critical thinking, I guess.

      1. nick says:

        I have been called Glutentard, for years due to the fact that I am Celiac diseased / Gluten sensitive or whatever current name. Never bothered me, but could see how it is offensive. Sorry.

        Did not want to insult anyone. Just pointing out a few facts. and using lousy grammer and words to do so.

        Again sorry and not trying to do anything except show my point of view. Harsh as it may be to some.

        PS I would love for someone to poke holes in what I pointed out, I will not get offended. I am 17 lack the wisdom you may have ‘Mouse Says’ and I openly accept any info/ideas. Even if you think I am in anyway like a neofascist cunnt. opps offended some more I bet.

        1. mouse says:

          I appreciate the apology. Nick. Reading your comment, it sounded like you were intentionally insulting people who either have gluten sensitivity or believe they have gluten sensitivity in a way that was also derogatory to folks with cognitive delays. It sounds like that was not your intention at all. So lets start over.

          One reason that I didn’t address your points initially is that I couldn’t understand what you were getting at. Understanding that you are coming from the perspective of someone who has a reaction to gluten makes the rest of your comment make more sense to me.

          Honestly, I’m hoping someone who is more knowledgable than me can address some of you points. I think that the article is more nuanced than you are reading, but unfortunately, it’s late for me, and I can’t go through all of your points.

          If I don’t see folks giving you some feedback, I’ll put together my response tomorrow, for what it’s worth. I’m no expert by any means.

          Regarding your Anne Coulter comment. Hm – I don’t think I’ve ever seen someone get that word by the filter/moderators here.

          1. nick says:

            It’s all good now. Richard Mc** answered all my questions above..lol. What is he doing here anyway?

            I should have filtered that neofascist comment myself, I am not a fan of Ann Coulter. worked me up a bit.

            I blew it with the word play, out of my league here. Seems like doctors in field have no idea what is going on still. Celiac test is not safe if one is allergic or Celiac diseased.

            Have a good life and question the people that tell you what to think.

            cheers

            M

            1. mouse says:

              Hey Nick – maybe you’re gone, but I thought I’d drop an (excessively long) response, regardless.

              Like I said before I’m not a medical person, so take my words with a grain of salt. But I have read a reasonable amount on medical issues as a layman and dealt with doctor’s for my and my children’s health care, so maybe I can add some points to your concerns. Please don’t be offended if I say things you already know, it’s just easier if I lay things out as I think them without guessing at your previous knowledge.

              First celiac vs allergies vs gluten sensitivity. You seem to be using these definitions interchangably, but they can’t be. Celiac is an auto-immune response that occurs when the digestive track is exposed to gluten. An allergy (often wheat allergy in this case) is not an auto-immune response, allergies have their own seperate biological process, symptoms and risks. Allergies are also diagnosed and treated differently. Celiac and allergies are reasonably well understood, (not always easy to diagnose, though) the concept of gluten sensitivity as a process that is separate from both Celiac and allergy is the main concern in this article.

              The article also focuses on gluten sensitivity in terms of irritable bowel syndrome, other symptoms that we sometimes see associated in the press and popular literature, such as autism, joint pain, etc are not really the focus, although we do see a bit on depression.

              Regarding testing -you seem concerned that testing for celiac disease or allergies is unsafe. I think you maybe misreading the description of celiac in this article. You say if you have celiac “Gluten you will burn off your nutrient receptors, possibly will never repair. “celiac disease can lead to osteoporosis, anemia, infertility, certain intestinal cancers, other autoimmune disorders, and an increased risk of mortality””

              But, as far as I can see, the effects of a trial with gluten are completely reversible when a gluten free diet is resumed. So years of untreated celiac disease may lead to the conditions listed, but weeks of it would not lead to irreparable damage. You would want to talk to a good specialist to confirm that. On the other hand, even if it’s not dangerous, that doesn’t mean that it might not be miserable and totally impact your quality of life or even health for a time. This is why it’s better for the doctor to do the best possible diagnoses when the patient is experiencing symptoms, before they stop gluten. If this doesn’t happen, though, you just have to weigh the benefits of having an accurate diagnoses against the negative quality of life that eating gluten to be tested may bring.

              One thought on testing, though. It’s good to keep in mind that some people who believe they have celiac (without a verified test) may actually be suffering from another illness A delay in testing could result in a delay in a more accurate diagnoses. I would consider this particularly if one is still experiencing concerning symptoms while gluten free.

              Allergy testing can also be safe when done under a doctor’s supervision. If you have ever had hives, swelling in the lips or mouth, problems breathing after exposure to any food or substance, you should tell a doctor. They can do testing with the appropriate equipment and reverse any allergic reaction with medications they have at the office or hospital. It’s very important that allergies like this not be confused with celiac, because someone with a serious food allergy may be at the risk of death from anaphylactic shock. They may need to be even more vigilant than someone with celiac and carry an epipen.

              As to gluten sensitivity. It appears there may be a reasonable number of people who have an IBS type symptoms in reaction to gluten who are undiagnosed celiac disease. There is another reasonable number of people who believe they are gluten sensitive but actually appear to be reacting to other components (fructans) in gluten containing foods. There appear to be some who are having a psychologically conditioned negative reaction (nocebo) to foods they believe contain gluten. There may be people who have non-celiac, non allergic reactions to gluten, but we don’t have good research on that yet.

              Unfortunately, we don’t have easy accurate tests to tell who’s who. At this point the only testing process sucks for the patient and is still time intensive and kinda uncertain.

              What fun.

              I’m not going to tell you this is great news. But you can’t have progress without uncertainty, so this seems like a start to me.

              Sorry this turned out longer than I meant. Tried to edit it down, but wasn’t very successful.

  21. Michael B says:

    Mouse Says

    threw the worst insult I see in here

  22. Richard McCarter says:

    I need to make a comment how, how do I?

  23. nick says:

    still lacking wisdom, back to answer some feed backs.

  24. Scott L says:

    This doctor is changing the world of personal health: http://vimeo.com/35786912

    After watching the video, visit: https://www.genesispure.com/myhealthychoices

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