ID-10087749

The Gluten Contamination Elimination Diet

As many of us already know, there are some celiacs who are “refractory” and continue to have ongoing symptoms after going gluten free. In addition, there are a bunch of us who are “super sensitive” in terms of reactions to gluten cross-contamination. I am one of the super sensitives. Not too long ago I had a reaction from eating one bite of a Trader Joe’s “no gluten ingredients” brownie which I had prepared in my own gluten free kitchen for a potluck.

Just last week, Dr. Fasano and colleagues published a research paper on the effects of 3-6 months of a diet of exclusively whole, unprocessed foods on the symptoms of celiac patients who had no improvement while eating strictly gluten free. In this study patients were considered to have non-responsive celiac disease (NRCD) if they failed to respond to the gluten free diet or had a recurrence/relapse of symptoms despite being gluten free. Steroids are currently the standard of care for treating NRCD, which as we know can have serious side effects.

The researchers coined their diet the “Gluten Contamination Elimination Diet.” Here is the breakdown of foods with are allowed and prohibited on this diet:

Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade.

Not allowed: millet, sorghum, buckwheat or any other grains, seeds, or flours; frozen, canned, or dried fruits and vegetables; lunch meats; ham; bacon; seasoned or flavored dairy products; processed cheeses; flavored and malt vinegars.

Basically, all processed foods are eliminated. Of note, dairy is not reintroduced until week 4 of the diet.

17 patients with NRCD, all female, were placed on this diet for an average of 3-6 months. 14 of the 17 (82%) significantly improved on the Gluten Contamination Elimination Diet. Of those who did have biopsies performed after the diet, all but one had resolution of their villous atrophy. This is important information as there have been a lot of recent studies showing that persistent villous atrophy is common in celiac disease. Most of the patients in this study were able to eventually resume a “traditional” gluten free diet.

It has taken me over 3 years, and a lot of trial and error, to figure out the foods which my body loves and hates. Interestingly enough, my body’s food preferences are almost identical to the foods on the “allowed” list in this diet. Had I known about this diet, and adhered to it when I was first diagnosed, it would have saved me a ton of pain and anguish. I am optimistic that this diet (or a similar version) will become the standard of care for those newly diagnosed with Celiac Disease, and I hope that this happens sooner than later. If we work together, we can get the word out!

Reference: “Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients.” BMC Gastroenterology. 2013. 13:40 (e-pub).

19 thoughts on “The Gluten Contamination Elimination Diet

  1. Molly (Sprue Story)

    I’ve often wondered to what extent the removal of trace gluten contamination is responsible for the improved health people experience when they go grain-free/paleo, so this is really interesting. Now I just wonder where they’d put soy? Probably in the not allowed category?

    1. Jess Post author

      Hi Molly,
      Thanks for reading. I really feel like this paper supports your suspicion that we’ve all been getting a pretty big load of gluten contamination through “gluten free” grains and products with time. What is very interesting is that so many of the patients in this study are able to later on go back to eating GF grains after full healing has occurred. I hope that this group is followed for a long time so we can learn from them and see if they have continual relapses or not when back to eating grains. In the meantime I feel like we are all our own research subjects to a degree! At this point I am very, very grain light and just about to remove them all for a while.
      I would have to guess that soy is prohibited, as I’ve read and heard that it is often gluten contaminated (and that those of us with soy intolerances may actually be getting reactions from gluten cc in soy products). Needless to say, it will be interesting to see what plays out with all of this…
      Also, I am so happy to have found your blog and look forward to reading.
      Jess

  2. alternativeangie

    Hi Patient Celiac-
    Thanks so much for this summary! I am your Facebook “friend,” I have the Alt-ternative Autoimmune page & a fellow “super sensitive” Celiac. Dr. Fasano is my doctor. I adopted Autoimmune Protocol for Paleo (very similar to his diet outlined here) before I became his patient. When he saw me, he told me I was already doing the right thing & to keep up the good work. I wish I would have known about AIP in the first 3 months post-diagnosis (before meeting Fasano). I wasted valuable healing time w/ the tradition gluten-free diet. BTW, Dr. Fasano is just as great in person as he is in these research papers. He’s our Celiac rock star.

    1. Jess Post author

      Hi Angie,
      You are so lucky to have him as an MD. I truly hope that through our blogs, social networking, etc. that we can reach a lot of the newly diagnosed and get the word out that a diet of whole foods (and no grains) for the first 3-6 months after diagnosis with Celiac Disease is probably the way to go. I also wish that I would have known to do that. Instead, I took the advice to go gluten free, and continued to eat a lot of GF grains and processed foods for my first few years after diagnosis (which, looking back, wrecked havoc on my body). I think that there are a ton of us who have gone through similar experiences. The positive is that at least we have this info now and can proceed on.
      Also, I love the photos of your meals which you are posting on your FB page…I have “stolen” several of your ideas the past few weeks! Thank you for everything which you are sharing and doing.
      Jess

  3. Rebekkah Smith

    This is probably why I’ve seen such improvement for my son on a GAPS diet! It’s even more strict, allowing the gut to heal from all the damage. But, it’s amazing!

    1. Jess Post author

      Hi Rebekkah,
      Thank you for sharing your experience with the GAPS diet. It seems like it has a lot of similarities to the diet in the paper which I discussed. The common element in so many of these diets which seem to improve health (GAPS and Paleo and AIP and FODMAPs) is the avoidance of processed foods. Do you have any good starting points, books, websites, etc. for the GAPS diet which you would recommend for others who may be reading? I personally only know the very basics of this diet.
      Thanks!
      Jess

  4. Sarah

    Could we also begin a discussion about the fact that this suggests 20ppm is too high? Also, I did not see in the article that they evaluated gluten contamination of the food. Rice and dried beans are a known source of gluten contamination in GFD’s. Nuts are often processed on shared equipment. It seems this leaves room for the possibility that sourcing of the whole foods could impact success.

    1. Jess Post author

      Hi Sarah,
      You bring up an excellent point that 20 ppm may be too high. There really seem to be a LOT of us on the internet forums, blogs, etc. who seem to react to <20 ppm. What we really need is a well-designed, randomized controlled trial in which large numbers of Celiacs are put into groups and given <20ppm v. <10ppm v. <5ppm and so on, and then evaluated not only for symptom reduction and villous changes, but also for leaky gut symptoms. It has been a long time since I’ve reviewed the literature which deemed <20ppm to be safe for Celiacs, so perhaps this has been recently done and I’m in the dark. Or perhaps there is something about Celiac Disease and gluten sensitivity that is changing with time, so even if <20 ppm was once safe, it may no longer be due to changes in wheat and other environmental exposures. What are your thoughts?
      I am pretty sure that they did not evaluate “allowed” foods for gluten cc and that the subjects were able to choose their own brands, manufacturers, etc. of the “allowed” foods, but you are spot on about the potential problems with nuts, rice, and beans. The only nuts which I have been able to eat have been ones I have ordered on nuts.com. Almost every other nut I’ve come across has either the “shared equipment” or “may contain wheat” warning.
      Anyway, thanks for reading and I would love to keep the conversation going…
      Jess

  5. Martin

    I do believe that eliminating gluten contamination is just one possibility of how the diet helped. The other is that the whole food diet improved the intestinal barrier to the extent that neither trace gluten nor any other food particles are able to cross to the blood stream and trigger autoimmune response.

    1. Jess Post author

      Hi Martin,
      Thank you for sharing your information about how a whole foods diet can help to heal those of us with increased intestinal permeability (leaky gut). There seem to be far too many of us with Celiac Disease who have developed additional food intolerances, and I, myself, have noticed an improvement in my food sensitivities since drastically reducing my consumption of gluten free grains and dairy.
      Thank you for the information which you are sharing on your page, http://www.leakygutresearch.com (I hope that you don’t mind that I shared the link!)
      Jess

  6. Martin

    Jess, current medicine does not have all the answers so we need to work to be ahead of the game, my site is an attempt to work towards that. Many thanks for sharing the link!

  7. Laura

    - The people in this study were diagnosed with non-responsive celiac disease. All of them except one had either positive blood tests for CD or positive biopsy for CD, even though they were on a standard GF diet. I’m not sure why one person with negative blood test for CD and “Marsh 0″ (normal) biopsy, was included. If someone has improvement in their symptoms without any change in CD test results, lots of things could be going on.
    - The people who were candidates for their study, with “non-responsive CD” seem to have an uncommon condition. CD occurs in about 1/250 to 1/100 adults; probably it’s a subset of celiacs with worse symptoms who end up at to Fasano’s clinic. And they said that 2.3% of celiacs at his clinic, were considered candidates for the super-gluten free diet.
    - They said 79% of the people in the study were able to go back to a regular GF diet after a few months on the super-GF diet.
    - It might be that the people who were chosen for this study, happened to be fans of food that was unusually contaminated with gluten. They said that most celiacs can tolerate ~10 mg/day of gluten in their diet without intestinal damage. But, that’s quite a tiny amount, and if someone happened to be eating a non-gluten food from a particular source that wasn’t careful about gluten contamination, they could easily be getting more than 10 mg/day of gluten. The patients’ diets before the super-GF diet, don’t seem to have been analyzed for gluten contamination.
    - This study is on a small number of people, who weren’t blind to the gluten contamination.
    - It’s quite possible to have a non-autoimmune reaction to gluten or wheat (as in non-celiac gluten sensitivity). Even if wheat is genuinely the culprit, this doesn’t mean that it’s causing an autoimmune reaction in amounts of less that 10 mg/day. It might be causing an allergic reaction or some other type of immune reaction.
    So the study does NOT show that one can have a super-sensitive autoimmune reaction to gluten. What it does suggest is that if one’s CD tests don’t normalize with a standard GF diet, that gluten contamination might be the problem.
    To prove that trace gluten contamination can perpetuate the autoimmune intestinal damage in CD, they would have to split NRCD patients into 2 groups: all of them would do the GCED, and half of them would be given trace gluten, in a double-blind fashion. This is a preliminary study which shows that further research is needed to see some people need to avoid even tiny amounts of gluten to avoid intestinal damage.
    Getting CD blood tests and/or biopsy, if one still has symptoms on a standard GF diet, would be a good idea, to see if one is in this category of “non-responsive celiac disease”.
    Gluten/wheat might still be the culprit if the CD tests are negative – but likely a culprit in a different sense, where the treatment would NOT necessarily be super-strict avoidance. Trace amounts of wheat contamination might even be beneficial – they might cause desensitization to wheat allergens so that people don’t have an unpleasant experience when they accidentally get glutened.

    1. Laura

      Trace amounts of wheat contamination might even be beneficial
      That is, it’s possible that getting a tiny amount of wheat by mouth at regular intervals would desensitize a wheat reaction. It would have to be small enough to not cause autoimmune damage.
      Being exposed to allergens on the skin or in the nose can even cause food allergies – the site of exposure matters.

    2. Jess Post author

      Hi Laura,
      Dr. Fasano did discuss this study at the International Celiac Disease Symposium in September, and the subjects with refractory celiac disease did have their diets analyzed and they were doing the GF diet correctly. Although this study is not perfect, as no research studies are, it is very well designed and I believe that the information obtained is helpful and meaningful. I think that it would be logistically challenging to recruit subjects with non-responsive celiac disease into a clinical trial where there is a 50:50 chance that they would have to consume traces of gluten on a regular basis. I personally would never choose to subject myself to that.
      And yes, there is technically not a medical term for those of us who are “super sensitive” to gluten contamination, hence this term was not used in the paper, but in the lay population it’s a pretty good descriptor for those of us who have found that we react to foods with gluten levels that are below 20 ppm.
      Thanks for your input.
      Jess
      P.S. I am a bit lost on your suggestion that those of us with celiac disease should subject ourselves to traces of wheat to desensitize ourselves. Are you alluding to the fact that we may have non-celiac wheat “allergic” reactions in additions to the autoimmune response of celiac could, theoretically, improve with a regular exposure? Or are you referring to the peptide based vaccines in development for celiac? I cannot support any hypotheses/suggestions that celiacs should expose themselves to wheat on purpose, as I believe that, based on our current understanding of celiac disease, that the harms of gluten ingestion greatly outweigh the risks.
      Jess

  8. Laura

    the subjects with refractory celiac disease did have their diets analyzed and they were doing the GF diet correctly.
    They avoided known sources of gluten in their diets before the GCED. But their diets before the GCED weren’t analyzed for cross-contamination. It would have taken a lot of work to do this analysis, and surely they would have written about that work in the paper. The patients were outpatients buying their own food, so far as I can see.
    In the paper, they mention another paper where gluten contamination of various inherently gluten-free foods was analyzed. Some foods were drastically contaminated. One product had 3000 ppm of gluten! 32% of the products had >20 ppm of gluten.
    So what if the people with “non-responsive celiac disease” were eating such products? What if some of them were eating the product with 3000 ppm of gluten?
    I don’t think they know how much gluten those patients were getting before going on the GCED. That’s why this study doesn’t show that some people get autoimmune damage from incredibly small amounts of gluten.
    With reactions to trace amounts of gluten – I don’t think it’s at all uncommon for this to happen on a GF diet. I have heard about reactions to trace amounts, similar to what you describe, many times from many different people. I used to subscribe to a celiac mailing list and people would often talk about problems with trace amounts in skin creams, etc.
    I have reactions to tiny amounts myself – not just with gluten, but with my other delayed food allergies as well. I’ve heard people say this about allergies besides wheat, too.
    I don’t think this is what Fasano is talking about in this paper. He’s talking about people who may get autoimmune damage from trace amounts of gluten. If this happens, it would happen to at most about 2.3% of celiacs. Probably less, since the people referred to his clinic have very serious problems.
    Fasano is probably quite aware that celiacs often react to tiny traces of gluten once they’re following a gluten-free diet. So far as I can tell, he’s talking about a different, much less common and much more serious condition – where the intestines don’t heal on a GF diet.
    To find out whether you had this rare condition, you would have to get a biopsy, so far as I can tell. In the paper he said that he doesn’t consider celiac blood tests to be diagnostic.
    Yes, it’s possible that taking tiny amounts of wheat regularly by mouth would actually be beneficial, and it seems likely that people who react to trace amounts of gluten have developed some kind of wheat allergy (IgE or non-IgE mediated) – and it’s possible they could be desensitized with tiny amounts of wheat, taken orally. Oral immunotherapy has helped people with other food allergies. I wasn’t suggesting doing it – just saying that perhaps, done in the right way, it would be helpful.

  9. Laura

    ps I think you could tell if your wheat hypersensitivity reactions are antibody-mediated or cell-mediated by the time delay.
    I start to feel bad about 1/2 hr after ingesting the foods I have these allergies to. This is actually considered an immediate hypersensitivity reaction from what I understand, and consistent with IgE-mediated allergy (or perhaps free light chain-mediated allergy).
    Cell-mediated reactions take about 24 hrs to start, from what I’ve read.
    For very small amounts of food allergens, I sometimes notice a reaction starting only 4-5 hrs later. But if it’s a larger amount, I’ll notice it starting about 1/2 hr later.
    The autoimmune process in celiac disease is cell-mediated from what I’ve read. See http://www.nature.com/mi/journal/v2/n1/fig_tab/mi200875ft.html It would have a different sensitivity from the immediate hypersensitivity reactions to wheat.

  10. Laura

    The full text of this paper from Nature on the process of intestinal damage in CD is available online at http://www.nature.com/mi/journal/v2/n1/pdf/mi200875a.pdf
    They do say that IgA immune complexes may contribute to this process, although it’s mostly cell-mediated inflammation.
    But anyway, immediate hypersensitivity reactions to gluten grains in CD (as well as to other foods, sometimes) do not necessarily mean that intestinal damage is happening. Perhaps these hypersensitivities develop if one has tendencies to allergies along with CD.
    They mention enzymes that could help celiacs to be less sensitive to gluten contamination.

  11. Laura

    I found an interesting paper showing histamine release in the duodenum occurred in some celiac children after gluten challenge: http://jcp.bmj.com/content/35/6/596.full.pdf
    From a later paper Challenge with gliadin induces eosinophil and mast cell activation in the jejunum of patients with celiac disease:

    The secretion rate of eosinophil cationic protein started to increase 20 minutes after challenge … with gliadin and reached maximum levels 40 minutes later. The secretion rate of histamine started to increase 40 minutes after gliadin administration. Concurrently with these inflammatory events, the secretion of albumin was doubled as a sign of increased mucosal leakage. …
    These data indicate that eosinophils and mast cells are both involved in the early gliadin-induced reactions of the small intestine.

    From a quick Medline search, it seems to be unknown what the mechanism is for this activation of eosinophils and mast cells when celiacs are challenged with gliadin. It might be immune, e.g. localized IgE antibodies, or non-immune.
    Dr. Scot Lewey in Colorado does mediator release testing, which may be a useful way to identify food sensitivities.
    I call my “delayed food allergies” allergies rather than intolerances because they’re acquired reactions, and also once I’ve acquired a reaction to a food, a milligram or so of the food protein can cause a reaction. I doubt there’s a non-immune explanation for that, so apparently they involve my immune system.

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