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).
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?
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
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.
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
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!
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
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.
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
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.