Heads Up: this is a long post (it’s been 5 months in the making) but it is packed full of great information so if you can’t read it all now, please come back when time allows, or read it in sections (I’ve added a link at the bottom of the page for a printable version of this post). I also encourage you to click on the links I share (and print the articles) for more in-depth reading from the experts.
There are a great many things that I wish I had known when I was first diagnosed with celiac disease in 2005, but the three most important are these:
1) If you have celiac disease, you have a leaky gut. You cannot develop celiac disease (or many other diseases for that matter) without having excessive permeability of the small intestine. Impairment of the intestinal mucosal barrier has even been implicated in the development of atopic dermatitis, a.k.a. eczema (I wrote about my many skin problems, including eczema, psoriasis and dermatitis herpetiformis in this post).
As Dr. Alessio Fasano states in his article, Mechanisms of Disease: The Role of Intestinal Barrier Function in the Pathogenesis of Gastrointestinal Autoimmune Diseases (bold emphasis added):
The classical paradigm of autoimmune pathogenesis involving a specific genetic makeup and exposure to environmental triggers has been challenged by the addition of a third element: the loss of intestinal barrier function. Genetic predisposition, miscommunication between innate and adaptive immunity, exposure to environmental triggers, and loss of the intestinal barrier function secondary to dysfunction of intercellular tight junctions, seem to all be key ingredients involved in the pathogenesis of autoimmune diseases. This new theory implies that, once the autoimmune process is activated, it is not self-perpetuating; rather, it can be modulated or even reversed by preventing the continuous interplay between genes and environment. As tight junction dysfunction allows this interaction, new therapeutic strategies aimed at re-establishing the intestinal barrier function offer innovative, unexplored approaches for the treatment of these devastating diseases.
2). Going on a gluten free diet will heal the villi of the small intestine in celiac patients (or at least it should, but according to this study, only 8% of adults diagnosed with celiac disease ever fully heal…8%!!! Also see: Mucosal Recovery and Mortality in Adults with Celiac Disease After Treatment With a Gluten-free Diet), but a gluten-free diet alone will not necessarily heal the gut, leaving the patient at an increased risk for developing more adverse food reactions, autoimmune disorders and even cancer (to learn more, download Zonulin and Its Regulation of Intestinal Barrier Function: The Biological Door to Inflammation, Autoimmunity, and Cancer by Dr. Alessio Fasano). The reason for this is due to the continued inflammation brought on by macromolecules entering the blood stream via a leaky gut.
Dr. Peter Green’s explains in his book, Celiac Disease: A Hidden Epidemic (Revised and Updated Edition) how a leaky gut develops:
“It is important to understand that the final stages of digestion, absorption, and transport of nutrients occur through – not between – these tiny, fingerlike projections (the villi). When there is inflammation, and a breakdown of the lining of the intestine, the bowel may become “leaky.” This enables whole molecules (a.k.a. macromolecules) of food and/or toxins to get between or through the epithelial cells, interrupting their protective function. When the lining is intact, larger molecules will not enter the bowel wall and bloodstream.”
3). There are MANY factors (in addition to gluten) that contribute to increased permeability of the small intestine: poor intestinal flora, parasites and other infections, other food allergies and intolerances*, NSAIDS, alcohol, antacids, antibiotics, chemotherapy and stress (just to name a few).
*It is well established that an intolerance to cow’s milk proteins can cause intestinal damage identical to that seen in celiac disease. This is not a gluten-driven cross-reaction, it is a separate enteropathy (see Cows’ Milk-Sensitive Enteropathy).
So, to sum things up:
1) A leaky gut is one of the required ingredients for the development of many adverse health conditions, including, but not limited to, autoimmune disorders (like celiac disease and Type 1 diabetes) and cancer.
2). While gluten is one of the biggest contributors of impaired intestinal barrier function in all humans, regardless of the person’s genetic expression of autoimmunity (yep, you read that right), leading to increased intestinal permeability to macromolecules (gliadin is a key trigger of zonulin release), there are other contributors of a leaky gut as well.
3) Research is showing that the autoimmune process can be halted (or even reversed), if the intestinal barrier is restored to optimal health. Now, before you go getting too excited, that statement does not mean that if a celiac heals their intestine they can resume eating gluten without suffering a relapse. What it does mean though, is that if you heal your intestine you may be able to prevent the development of additional autoimmune diseases and cancer.
So how does one go about healing a leaky gut? That has been my billion dollar question and that is also why my family became official patients of HealthNOW Medical Center back in February. There have been many books written on celiac disease and gluten intolerance as an illness, but I have found precious few resources that talk about the necessary steps involved to help a gluten intolerant person fully heal (and hopefully prevent the devastating consequences that can come with continued inflammation caused by a leaky gut). Because it’s quite obvious that a gluten-free diet alone is not enough, if it were, then the stark reality that only 8% of celiacs ever experience complete recovery would be significantly higher. Dr. Vikki Petersen talks extensively about the steps one needs to take in order to heal the intestine in her book, The Gluten Effect and in her articles, Why Do Some with Celiac Disease Never Heal?, Gluten Intolerance, Increasing Awareness (even of your Dr.) and Antibacterials and a Leaky Gut.
A few of the important steps to take are to find out if there any infectious organisms (such as parasites, bacteria, amoeba and yeast), improve the health and diversity of the probiotics in the intestine, correct any nutritional deficiencies, hormonal imbalances and discover if you have any additional food intolerances. You can learn more about these issues in the following posts where I shared some of our problems with poor intestinal fauna (the good bugs), parasites (Sam had a pinworm and Luke had a hookworm infection), and adrenal fatigue. I will also add that it’s important to discover if you are taking any medications that are known culprits for causing a leaky gut (such as NSAIDS) and take steps to remove them. A good place to start is by discovering the underlying cause(s) of the problem that require the drug to treat the painful symptoms in the first place…and then take steps to correct the problem.
While I am not a doctor, I have been on an obsessive mission to figure this out over the past year and a half. I have five autoimmune disorders and I’m petrified of developing a sixth. I’m also hell bent on avoiding my uncle’s fate of succumbing to non-Hodgkin’s lymphoma. In the past 3 years that I’ve been following an increasingly strict gluten-free lifestyle, my tTG and EmA blood tests have continued to come back elevated and I haven’t completely understood why (but as I will show in a moment, there are clear reasons as to why my 2009 test was quite high). Dr. Ron Hoggan, Ed.D., co-author of Dangerous Grains (and several more books on the subject of gluten sensitivity) began this article on non-Hodgkin’s Lymphoma with a statement that is never far from my mind: “celiac disease is sometimes referred to as a pre-malignant condition”).
The first followup blood test I took (once I had finally quit cheating on the gluten-free diet), was 8 months after I went “strictly gluten-free” (and by that, I mean I was no longer intentionally cheating). However, I was not super cautious in regards to cross-contamination back then and I got all of my gluten-free ingredient/labeling information from one of my favorite resources, Gluten-Free Living Magazine (click here to read their comprehensive list of articles explaining why certain ingredients that have long caused concern for the gluten-free community are technically gluten-free, ie: wheat glucose syrup, natural flavors and envelope glue). I felt quite confident relying solely on GF Living’s information, especially since I do not experience any adverse physical symptoms when I get “glutened” (honestly, I have no earthly idea when I get contaminated which makes managing my celiac extremely difficult). If an ingredient label did not list any gluten containing ingredients, I deemed it safe “safe enough,” and I never called companies to drill them about their manufacturing practices. I didn’t worry about gluten in my personal care products (outside of toothpaste, mouthwash and lip balm) because everyone told me it couldn’t pose a problem unless I ate it. And lastly, I was also frequently eating in restaurants that offered gluten free menus at the time and we all know there are a million opportunities for cross-contamination at a restaurant.
My 2009 Followup Celiac Panel:
The above test results were disconcerting to say the least and this was when I began to seriously re-think my definition of the term “gluten-free.” It was also shortly after this test that I began a downward spiral with my health, developing serious chronic infections and a skyrocketing serum iron level that led me to the obvious conclusion that my immune system was in dire straits.
It was during one serious infection (that had left me bed-bound for 6 weeks) that I started this blog and began doing my own medical research, my health and life depended on it because outside of handing me a diagnosis, my gastroenterologist wasn’t the least bit helpful in teaching me how to live with celiac disease.
The following is from The University of Chicago Celiac Disease Center’s Guide for Followup Testing:
Celiac Followup Care
New guidelines on the diagnosis and treatment of celiac disease by the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition state that tTG-IgA testing should be used for follow-up care. Interpreting this test result is straightforward—a celiac on the gluten-free diet should have a negative test. The numerical value of the test is not important.
The University of Chicago Celiac Disease Center recommends additional testing, because the tTG test can sometimes be inaccurate in people with autoimmune disorders like Type 1 diabetes and thyroid disease. In addition, the tTG can sometimes become negative before a celiac has actually experienced significant healing.
For these reasons, Anti-Gliadin Antibodies (AGA) are also important. There are two types that need to be run: AGA- IgA, and AGA-IgG. In this circumstance, the numerical values of the tests are very important. The numbers should be as close to zero as possible, indicating a minimal antibody response to gluten.
Follow Up Test #1:
tTG-IgA: This test result should be negative. The numerical value of the test doesn’t matter as long as the result is negative.
Follow Up Test #2
Anti-gliadin IgA: This result should have a very low negative value. In this case, the numerical value does matter, because a high negative test result still indicates that a patient is eating gluten. A low negative indicates that the diet is working well.
And so began my 19 month journey into gluten madness. I began buying only products that were labeled “gluten-free” and I quit eating out, not just in restaurants, but also at the homes of my family and friends. I verified that all of my medications were gluten-free (by the way, glutenfreedrugs.com is a great resource, and I recommend bookmarking it on your browser). I dumped all of my personal care products that contained Hydrolyzed Wheat Protein and Vitamin E (which is often derived from wheat germ oil) in the trash and started using gluten-free shampoo, etc (I talked more about gluten and personal care products in this post). Heck, I even started making my own body scrubs, deodorant, lip balms and household cleaners! And this was when I also began making most of my own foods from scratch…to say that I had become a glutadoodle glutenphobe is putting it mildly, I was scared senseless!
After implementing all those changes, I was confident that my next blood test would show perfect zeroes, but alas, it did not (although it did come down quite a bit, but that is still not good enough).
My 2010 Followup Celiac Panel (I made sure my doctor included the anti-gliadin antibody tests this time):
As you can see, my tTG was a weak positive and my anti-gliadin IgA was just one point away from being a “weak positive.” And as The University of Chicago Celiac Disease Center stated above, “This result (AGA-IgA) should have a very low negative value. In this case, the numerical value does matter, because a high negative test result still indicates that a patient is eating gluten.”
Even as much as I had overhauled my diet and lifestyle, the blood test was clear, I was still getting glutened! Now, there could be several different reasons for this:
1). One or more of my gluten-free labeled products contained an amount of gluten that my immune system deemed unacceptable (remember, the term “gluten-free” is NOT the synonymous with “free of gluten,” and we are all different, some people can safely tolerate 20 ppm of gluten, while others react to as little as 5 ppm of gluten). Speaking of which, Amy Leger wrote a great article detailing the FDA’s recent move forward with the gluten-free labeling initiative over at The Savvy Celiac.
2). I could be one of the celiacs who reacts to even certified gluten-free oats (Diversity in oat potential immunogenicity: basis for the selection of oat varieties with no toxicity in coeliac disease, Gut doi:10.1136/gut.2010.225268)
3). Although I only buy flours that are labeled gluten-free (and have been since my 2009 followup test…prior to which, I used to buy Quaker Corn Meal, which is NOT labeled gluten-free), I want to share some critical studies that were published in 2010 by Tricia Thompson, R.D., Anne Lee, Schar, USA and Thomas Grace, Bia Diagnostics on the cross contamination of naturally gluten-free grains. You can read more here, here and here.
4). Airborne gluten (ie: wheat flour dust in a bakery). I have heard from numerous sensitive celiacs who react to airborne gluten which is why I bring this up (even though I don’t work in a gluten-filled bakery nor do I have a mixed kitchen). I haven’t found much research on this, but the renowned celiac expert Dr. Joseph A. Murray stated the following in his 1999 article, The Widening Spectrum of Celiac Disease (American Journal of Clinical Nutrition, Vol. 69, No. 3, 354-365, March 1999):
Even nonfood items may be sources of trace gluten and can cause symptoms in more sensitive patients. Such sources include medications (both prescription and over-the-counter); glues, pastes, and dry wall filler; airborne flour; communion wafers; fat replacers; cross contamination; and grain-derived alcoholic drinks.
Could my positive celiac panel be due to gluten associated cross-reactive foods?
Here’s how Dr. Tom O’Bryan explains cross-reactivity (from his article, “The Conundrum of Gluten Sensitivity 201: Why Don’t I Feel Great on a Gluten-Free diet: Is it a Sensitivity or a Cross-Reactivity to Other Foods?“):
“Cross-reactivity is the ability of an antibody to bind with similar-looking parts on different proteins called epitopes. This phenomenon is also known as Molecular Mimicry. In such a case the immune system confuses one food for another. Therefore, certain foods look similar enough to a reactive food to initiate an immune response.” Click here to read the full article.
In a nutshell, certain foods can make your body think you are eating gluten when in fact you are not (but causing a similar immune response as if you were eating gluten).
Ready to pull your hair out yet? No? Just wait till you see the foods on this list…hope you don’t have a serious morning java addiction, LOL!
My family and I all took the Cross Reactive Foods test (Array #4) from Cyrex Labs back in February and I will share the results in a minute but there are a few things I want to make clear first (and please remember, I am a patient, not a scientist):
- This is a brand new test and it’s only been available from Cyrex Labs since January of 2011 (you can read more about Cyrex Lab here), so there is not much clinical data showing how patients have responded to the removal of the cross-reactive foods (but I will add that I’ve had noticeable improvement in the way I feel since removing the foods I showed a positive reaction to. However, I have yet to re-take the Array 4 as well as my 2011 followup celiac panel to see if my numbers have come down).
- My decision to take this test came after I made significant changes to my diet and lifestyle and my celiac panel continued to come back positive. It is crucial for celiacs to understand that you cannot gauge your healing process by symptoms alone and I’m the perfect example of “no symptoms ≠ no damage,” please get your annual celiac followup blood tests!
- When I went to the Gluten and Allergen Free Expo in Chicago this past May, I had the opportunity to speak with Carol McCarthy Shilson, Executive Director of The University of Chicago Celiac Disease Center so I seized the opportunity to ask her if she knew of any research supporting gluten-associated cross-reactive foods (that I could share in this post), as well as her thoughts on the stool tests for gluten sensitivity (such as the test from Enterolab, which we ordered for our youngest son in 2010 and I shared the results of here). Carol was emphatic that there is no research supporting claims of gluten-associated cross-reactive foods and that stool testing for gluten sensitivity is not valid either (and then gave me the clear indication that she thought I was reaching for straws…or I was just plain nuts for even asking the questions in the first place, LOL!). Naturally, I began to re-think sharing our test results because my intention is to never pass along bad information (and I take that very seriously), but before I made my decision I asked one of my personal heroes, Dr. Rodney Ford what his thoughts were and he has granted me permission to share his response:
“The celiac people are usually closed minded about anything other than CD. They generally do not countenance Gluten/intolerance/sensitivity. I have no personal experience with Enterolab or Cyrex. They are not available in NZ. However, I know Tom O’Bryan and Ken Fine. Both enthusiastic. Both ethical. Both wanting to help with the gluten problem. People say how much they have been helped with a diagnosis by these test systems. Your CD Center person will be very conservative and hanging on to the status quo. Celiac/gluten testing is about to go through a revolution with the race on to find an accurate and acceptable test for gluten sensitivity. The distinction between CD and other gluten syndromes is becoming blurred (to the concern of CD societies). Hope that this helps. RF.”
Connect with Dr. Rodney Ford on his Gluten Free Planet Facebook Page for some thought-provoking discussions!
My good friend Shirley from Gluten Free Easily was with me at the conference and when she noticed how conflicted I was, she offered this:
Over the years I have come to take absolute statements about celiac and gluten sensitivity with a grain of salt, because many things that used to be considered absolutes have been discounted or revised. For example, 200 ppm or less used to be Codex standard for the safe amount of gluten in Europe; now it’s 20 ppm or less. That’s a HUGE difference. Celiac disease used to be considered a rare disease that a doctor might never see in practice. Now we know that it’s the most common genetic disease in the world, with at least 3 million people having celiac disease (even if most remain undiagnosed) in the U.S. alone (see video below). It’s been stated that if one does not have the genes for celiac disease, then one cannot have celiac disease. Yet 2-3% of those with biopsy-proven celiac do NOT have the genes identified (to date) for celiac*. It used to be stated that those who don’t have celiac disease cannot possibly have any issues with gluten, but researchers have now come forward saying that they have proof that non-celiac gluten sensitivity (NCGS) is a real condition. And while the research falls short of citing damage to the small intestine (in fact, medical experts are currently stating there is no damage to the small intestine from NCGS), Dr. Guandilini stated in this article that research in the UCCDC’s own lab showed “changes” to the intestine as a result of non-celiac gluten sensitivity.
Connect with Shirley on her Gluten Free Easily Facebook Page.
*Dr. Fasano talks briefly about gene negative celiac disease on page 4 of the article I linked to in Gluten Free Living Magazine.
The following is a great video of Dr. Joseph A. Murray discussing the rising incidence of celiac disease (it’s 5 times more common now than in the 1950’s and they know it’s due to environmental causes because genetic expression does not change that fast).
- Finally, don’t panic like I did when I first saw the results, the current recommendation is to remove the foods you’re reacting to (both the positive and equivocal) for 3 months to see if it helps calm the immune system enough so the intestinal wall can begin to repair itself (so this is not another banishment forever like gluten). I highlighted our blatantly positive results in yellow, but as you will see, we also had several ‘equivocal scores’ which represent the range between normal and suspicious low-positive results (the recommendation is to also remove the equivocal foods for 3 months). I will also confess that I am still unclear about a few things regarding this test:
1) As you can see in the antibody diagram above, rice is labeled as non-reactive due to “insufficient binding of antigenic determinants,” yet rice is one of the foods tested for on the panel (and Mike is the only one of the four of us who came back in the normal range for rice).
2). I don’t fully understand how we tested positive for cross-reactivity to Rye, Barley, Polish Wheat and Spelt (Mike was ‘equivocal’ for rye and spelt), when we’ve all been gluten-free for the past 3 years (and I have been hyper vigilant for Sam, Luke and I since April of 2009), unless the cross-reactivity is based solely on the presence of gluten antibodies circulating in the blood (Wikipedia has an interesting article on anti-gliadin antibodies, including a piece about how long it takes for the antibodies to disappear after commencing on a strict gluten-free diet).
UPDATE (8/22/2011): I just received an email from Jama Lambert, Education and Marketing Manager for Cyrex Labs explaining some of the confusion about this test and she has granted me permission to share her response:
I hope I can help alleviate some of the confusion you are having over Array 4. Since you had your test performed, we at Cyrex realized too many people were not comprehending the panel and thought all of the foods were cross-reactive. Thus, we changed the name of the panel to Gluten-Associated Cross-Reactive Foods & Food Sensitivity.
On Array 4 we have 9 foods that cross-react to purified gliadin in vitro (the 6 milk proteins from cow’s milk down to milk chocolate, yeast, wheat-contaminated oats and coffee); 4 gluten-containing grains (rye, barley, spelt and Polish wheat aka Kamut, camel’s wheat and Egyptian wheat); 8 foods that tend to be newly introduced on a gluten-free diet (we build a tolerance to food when we are children, but in the US, we do not normally eat sorghum, amaranth or quinoa, thus, as adults going gluten-free we may have a sensitivity; and 3 foods that tend to be over-consumed on a gluten-free diet and therefore the patient develops a new sensitivity (corn, rice, potato). We see a lot of rice positivity as rice flour is over-used in gluten-free substitutes.
Thank you again for your passion on this vital subject. I look forward to seeing more from you.
Heidi – biopsy-confirmed celiac disease and biopsy confirmed dermatitis herpetiformis:
Sam – positive celiac blood test but a negative intestinal biopsy (also positive for one copy of DQ8):
I know I have just dropped a ton of information on you (you were warned!) but it’s clear that there continues to be a growing body of evidence that gluten sensitivity, celiac disease, and other food sensitivities have become serious health issues in the “developed” world.
I sincerely hope at some point, western medicine will aggressively (and unbiasedly) explore this research and begin to develop new guidelines for testing and treatment, because it saddens me to think how many people will continue being unwell or worse, go on to needlessly develop other serious and potentially life threatening health conditions. And those people could be my family members…or yours.
This post is dedicated to my late uncle Terry, I love you and miss you so very much.
Have any thoughts about gluten associated cross-reactivity? If so, please share them in the comment section (I am very interested in continuing this conversation!).
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