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.
OR…
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:
Dear Heidi,
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.
Be well,
Jama Lambert
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):
Mike: non-celiac gluten sensitivity
Luke: non-celiac gluten sensitivity, negative for both DQ2 and 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.
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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!).
And welcome to my blog!
Whether you're here looking for advice on how to go gluten free (with delicious kid-approved recipes of course!), or to read some of the latest medical research on celiac disease and non-celiac gluten sensitivity...or even to read about one woman's rise from the depths of gluten-free despair to a place of downright enthusiasm, it makes no matter. The point is, you are here now so let's have some fun!
Read this whole article from the first word to the last. Very interesting. I swear, my daughter has reactions to (airborne) wheat. She will have symptoms just by eating next to a person who eats wheat. It drives me insane to think that somebody can breath on her and in 1/2 hour she is running to the potty, belly ache so bad it gives her the bends and the tell tale red circles under her eyes. Im doing the best that can be done but I feel so out of my league with all this, I wish there were more doctors like the ones you speak about here.
I wish I could have found a good Dr. that would have helped me figure out my stomach problems. I did get the blood test done for celiac from my allergy Dr. It came back negitive, but so did all my food allergy tests. I decided after 6 1/2 years of being really sick that I was sick of being sick so I went on a GF diet. The allergy Dr. thought that was the problem, Well 8 months later I feel healthy again. My body knows when it gets gultened. But I haven't been diagnosed with anything…is that bad? I figured if I found a way to make me feel better it shouldn't matter if I got a diagnoses or not…but now I'm not so sure.
Hi Tonya,
I have a very similar situation to yours. I had stomach problems for well over a year and couldn't figure out what was wrong. I just happened to get an email newsletter from a naturopath that talked about adult acne. I have that and couldn't figure out why. Well….I have come to find out that I only break out when I am glutened or eat dairy. I took myself off of gluten & began to feel better. I had the blood test after being GF/CF for 6 months. It all came back negative. All my allergy tests did the same. I was still having problems so I requested my regular doctor do the intestinal biopsy. It came back fine so I am in the same situation. I am SO sensitive to gluten. Lately I have been feeling like I am glutened and can't figure out why. I think Heidi's information on cross-reactive foods may be where some of my problems lie. I have considered getting the genetic test done because I have been gluten free for 2 years. Two of my 3 children are also on a gluten free diet. I live a few hours away from Chicago so I think I need to check out the Celiac Center there.
Thank you so much, Heidi! I love your site and would like your permission to repost this article on my blog. I have several autoimmune diseases myself, and since my trip to HealthNOW Medical Center at the end of June, I’ve been following a gluten-free/dairy-free/sugar-free diet. I agree with you that research and education is vital, so daily I diligently search the web, doing my best to gather enough reliable information to not only help me, but to pass on to my readers. Since I am new to all of this and am still learning myself (knowing my life depends on it), I have found that your site is very informative and helpful and that you explain things in a way that I haven’t quite gotten a grasp of yet. Please let me know if it is okay to repost. I look forward to hearing from you! Regards, Kathie Lea (http://glutenfreekathielea.blogspot.com)
Hot Damn Heidi!
This post is so full of great information that it’s overwhelming. I’m going to have to read it over a few times, but I needed to tell you how much I appreciate all your research. I’m no where near as meticulous as you are with research and I really appreciate all the leg work that has gone into this.
10 years ago my doctor had me do an elimination diet to figure out if I had food allergies (spoiler alert: I do). But I’ve never had my blood tested for celiac disease. After the elimination diet I just stopped eating gluten, and dairy, and then soy. And then cane sugar. And then grains (the whole process took me a while to both accept and sort out). And the difference in how I feel is pretty amazing. -I’m definitely one of those people who KNOW when they’ve been glutened. It’s awful. I’ve even tracked back and figured out when my allergies started to surface (which is about the same time I developed Hypothyroidism (hello, autoimmune!).
Do you think that I should get the blood test done anyway? I’ve never considered it before, but your post makes me think that maybe there might be more going on under this autoimmune/allergy rock…
lovelillian
Wow, this is a thesis paper! What great information, Heidi. You're so right, there are MANY things that lead to increased permeability and dysbiosis and also many things that aid in restoring balance. The removal of gluten is the first step, but that's just the start. There are lots of variables and each person is different. It takes a multi-pronged approach to heal and find vibrant health. Nutrient-dense, anti-inflammatory foods; movement (exercise); stress reduction; quality sleep; blood sugar balance; your emotional environment; and so on. It's not just one thing. And I also believe there is not just one answer or one test. I always say, it's a puzzle and everyone's puzzle is different. There are different pieces to each puzzle (as you see in all your test results).
I don't know what to think about the cross reactivity testing, but I agree with Dr. Ford that a "revolution" in testing is on the horizon. I've been watching testing protocols and treatment evolve for over ten years now. It's been interesting. For me (my own health with Celiac and DH), it's about simplicity. Committed clean eating and hyper-vigilant self care (see my "short-list" above). With few exceptions. While I've always felt there were many versions along the spectrum of gluten intolerance (because of all the varied genetic and lifestyle differences) and that narrowly defining the gluten syndrome by biopsy proven Celiac was a mistake, I also think we can overdo testing and complicate things even more so. Same with supplements and medications. I do think it's important to be open to new directions, but also be appreciative of what the past has taught us. One thing being, there are NO absolutes when it comes to gluten intolerance/sensitivity.
Great post, Heidi. Thanks for all your work in helping others!
Melissa
I wasn't able to copy and paste the list of suspect foods so I went on a search to find it in another form. I ran across this list:
http://alternativethyroidtherapy.com/wp-content/u…
that seems to indicate that some of the foods on your list are not considered cross-reactive. The article seems to have some association with Cyrex Labs but it was hard to tell the source since only the pdf was in the link. In any event, I am celiac who is Marsh 2 (endoscopy lingo for only partially healed) after 2.5 years gluten free. I really appreciate all the time and effort that went into your article.
Yay! Wow!!! I have been going though similar stuff with my regular doc. Frustrated beyond belief and am now on an elimination diet that is starting with just easy fruits and stuff to figure out why I am still feeling "crappy". My current doc will poo-poo all of this. But, in just over a month, I can find someone new!!! Thank you for all of your hard work!
Heidi – thanks for the information. I do have some questions though, since I've been trying to figure all this out too. How do actual food allergies fit into cross reactivity and gluten sensitivity? Can one get a positive for a wheat allergy but still have gluten sensitivity or even Celiac? Would a corn allergy test that came back positive indicate a separate corn allergy or could it also (or instead) be a cross reaction to gluten? I know I react to corn and wheat, but I'd love to know if the allergy reaction is different than a gluten reaction, or if the allergy may be a sign of something more (I had a weak positive blood test but neg EGD for Celiac after a month gf and refuse to eat gluten again just to be tested since I had a severe reaction to it.)
Hi Christine!
The "classic" food allergies affect a class of antibodies known as IgE (where as celiac disease and other delayed food sensitivities affect the IgA and IgG class of antibodies). IgE allergies generally occur immediately after exposure and the symptoms include hives, itching, swelling, reddening (flushing), and smooth muscle contraction, resulting in edema, asthma, GI symptoms, and sometimes, a life-threatening anaphylaxis reaction.
IgA and IgG reactions to food typically occur hours or days later and often cause different kinds of symptoms from IgE reactions, these can include: bloating or sluggishness soon after eating, GI symptoms (like diarrhea or constipation), dark circles under the eyes, sinus congestion, skin rashes (and the list goes on and on).
To answer your question about the possibility of having an IgE allergy to wheat and a gluten intolerance at the same time…the answer is absolutely yes, you can absolutely have both (and I do). In addition to having celiac disease, I also have an IgE allergy to both wheat and corn which I discovered through IgE RAST testing and the reactions are different. I can tell when I've had a corn product, I develop severe sinus congestion and itchy, water eyes (and I sneeze profusely) almost immediately. I have an extremely delayed physical reaction to gluten, it takes weeks or even months of continual gluten exposure before a physical manifestation will show up (I do not experience any of the GI symptoms). For instance, the last time I intentionally cheated on the gluten-free diet, it took 7 weeks of eating gluten 3 times a day before my DH (dermatitis herpetiformis) surfaced, and I did not feel the least bit of discomfort while I was eating it.
There is another test from Cyrex Labs that I would highly recommend looking in to, it's called the Array 3: http://www.cyrexlabs.com/CyrexTestsArrays/tabid/1… and it tests for 12 different gluten peptides (there's at least 45, but I've also heard there are as many as 60+). The anti-gliadin antibody blood test only looks for one gliadin (alpha-gliadin 33 MER, which is the most toxic protein in gluten, but not everyone reacts to this particular peptide). The test can't diagnose you with celiac disease (you need a positive intestinal biopsy for that, but there are a lot of pitfalls with the biopsy…it is not a great test in my opinion), but ithe Array 3 will definitely tell you if your immune system is reacting to gluten on some level and quite frankly, that's all you really need to know because the end result is the same, a strict gluten-free diet for life (and I do believe that having a positive confirmation of some sort is quite helpful in getting patients to adhere to the gluten-free lifestyle…it's not a diet, it is a way of life).
Hope that helps!
Heidi 😀
The blood test was done by a GI Dr when my GI symptoms got so bad I started missing school for them (law school, so missed classes were huge). He also did the EGD and said I didn't have Celiac. My current PCP happens to be a holistic dr who specializes in food allergies and Candida. He gave me a food allergy skin prick test, even though I'd done my own research and went gluten free on my own a year earlier (with much relief of my GI symptoms – not completely though and frustratingly enough the remaining ones I later discovered to be caused by medicine my GI Dr had put me on.) I know the skin prick tests take a lot of flack b/c they miss things, and even my Dr. said he doesn't trust most allergists to know how to do food allergy tests. He did a blind of Candida and 5 different foods: wheat, corn, dairy, soy, refined sugar. I was gluten and dairy free at the time but was told that didn't matter. The nurse administered the test and I reacted immediately to one of them (found out later that was wheat) and then was told to monitor the sites and my overall condition for a week and keep a journal. Apparently both corn and wheat swelled up over time, and only went away after a week and a half, whereas the other foods I had trouble finding the sites after a day or two, once the liquid had been absorbed. I guess based on that finding I have both IgE and long term reactions to wheat. Corn is more long term for me – I usually don't feel it until hours later, and by then it's hard to know what I ate or used that caused the reaction. Also my most common response is acid reflux, which is very frustrating since with Barrett's Esophagus I know every time I have reflux I up the risk of cancer, plus I have GI Drs. and everyone but my PCP on my back about taking PPIs – yet the PPIs (I tried 4 different ones all to the same end) caused the remaining GI issues b/c they kept me from properly digesting my food. In addition I've found studies online about the detrimental effects of taking PPIs long term, and since I was 28 when I was told I'd have to take them the rest of my life, long-term would be an understatement. It's just frustrating, not really having Drs. listen to you (we can't afford for me to travel across the country to see Dr. Petersen), and constantly having to dodge issues to avoid lectures. My most recent one was from a pharmacist whom I called to try and find out what I could take for reflux now that I'm expecting and was told I should not have stopped taking my PPI under any circumstances and that TUMs was the only safe remedy. Of course TUMS (and every other med like it) contains corn. Unfortunately I doubt I'm going to get any help from my OB when I see her for the first time this Wed either. I'm just so frustrated with modern medicine these days. I had a severe headache yesterday and the only thing I'm allowed to take is Acetaminophen, and of course there are no versions of that which are corn-free. And all I get for help from doctors is a "I don't know what to tell you." I feel bad about it, but sometimes I actually hope that corn allergies become a lot more prevalent – not that I want others to suffer through the difficulty and frustration, but so companies might stop relying on corn and corn derivatives so much.
Hi Christine,
Corn is definitely a big issue and one allergy that is often hard to track down. When I was young I was on narcotics for pain that was due to corn. I also had a severe personality change when I got a dose of it. I avoid it like I do gluten. Even the smell of microwave popcorn makes my heart race and I have to leave the building! The most frustrating thing about diagnosing a corn reaction is that the reaction is delayed. We'd eat popcorn Friday night and by about 11 on Saturday I'd go into a six hour reaction. It was pretty scary for my family to watch and experience. My doctor said that I was experiencing an inflamation of the brain and would just have to live with it. I reasearched like mad until I found articles that reported similar corn reactions. He later apologized saying that he was treating other patients for corn allergy as a result of my experience. One of his patients had such severe hip pain that she could barely walk. He found out she was a big corn eater and when she eliminated it from her diet the pain went away. So, a corn allergy can cause any number of symptoms.
I just wanted to let you know that I go to a compounding pharmacist that makes all my vitamins and some drugs for me. Such a pharmacist may be able to help you out. He searches far and wide for alternatives. It's wonderful to have someone that's willing to help.
All the best,
Irene
I think the tests above show why people see results eating Paleo – no Dairy, Soy, Peanuts, Sugar, or ANY grains – no rice, potato and gluten. Many people who went GF who still had problems eliminated all grains and dairy and saw great results, with all auto immune issues.
I think people are SO misled. Going to a GF diet does NOTHING! I joke, that we went from SAD (Standard American Diet), to a GF JUNK FOOD diet. It did nothing! I spent a fortune on “GF” junk food.
Once we removed ALL grains, NO dairy (not even Raw), No corn, No junky soy, NO sugar–I mean NONE, no honey, agave, etc.. We do okay with Stevi, etc…we began to heal.
However, at the end of the day, even if you are eating REAL food, some people still react to certain REAL foods. My little one reacted to honeydew and watermelon. I cannot have any citric acid! (Which by the way was in all my “healthy” beauty supplies. Once we healed her gut, we were able to reintroduce those foods in small quantities.
GAPS intro diet is a good place to start to heal. (Gut and Psychology Syndrome–McBride) Dr Mercola just did a fabulous interview with her!
I LOVE this blog. Read EVERY post. VERY grateful!
I too had to purge all I have learned.
http://www.realnutritionblog.blogspot.com
xo!
Jeni Clark~
Jenni – I just wanted to point out that citric acid is on the "derived from corn" list, so any sensitivity or allergy or cross reaction to corn could cause a reaction to citric acid. I was just diagnosed with a corn allergy in April and it's overwhelming how many ingredients are derived from corn.
Yep! Isnt is crazy! When you start to "dig" on corn, holy smokes, it eye opening!! (and a bit overwhelming!)
Hi Jeni,
While I definitely agree with you about the gluten-free junk food (we did the exact same, went from a gluten-filled SAD to a gluten-free SAD), I can't say I agree with the statement "going gluten-free does nothing." While it is often not enough, it is certainly the most crucial first step. For instance (and I will use celiac disease as an example since that is what I have): I could have removed dairy, grains, soy, sugar, etc. and increased my consumption of whole foods but it would not have done me much good if I continued eating gluten and my villi remained flattened because I would not have been able to absorb the vital nutrients from the fruits and vegetables.
I will also add that if my doctor dumped a gluten-free, dairy-free, grain-free, legume-free, sugar-free diet on me all at once, I would have curled up in a ball and just cried. I had to become okay with being gluten-free first before I was able to emotionally carry forward on my journey to good health.
That all being said, I cannot agree with you more about eating real food. If I knew then what I know now, I would have done everything differently by sticking with simple, whole foods (which are delicious and I do not feel the least bit deprived).
Hugs,
Heidi
Oh geeze, sorry, got on my soap box, lol, no, obviously removing gluten if you are celiac/G sensitive is step #1. I just think people stop there and that is what is frustrating. I hear all the time that people "are not better" on a GF diet and you know its just bigger then that. 🙂
On a side note, I just LOVE your creamy garlic dressing! Its so nice to "feel' like I am eating dairy! I think its better then the dairy version! I did add Eden organic red wine vinegar, and Braggs apple cider vinegar to the recipe as well as water to help with mixing. I dont have a Vita Mix but my blender did a fine job!
Recipes like these are priceless! THANK YOU!
Jeni Clark~
Jeni,
Please don't apologize (just ask my husband about the size of MY soapbox, LOL!). And you are right, many people go gluten-free and stop there but I think that is because they just don't know. When I first went gluten-free (and didn't notice any difference in how I felt), I used to think folks who were also dairy-free, egg-free, soy-free, sugar-free, cucumber-free, etc., etc. were just plain nuts! I had no earthly idea as to why someone could have all of those problems but boy, now that I understand more about the mechanism behind additional food intolerances, it all makes perfect sense to me.
There really needs to be a handbook for newly diagnosed patients because it can take years for the normal person to figure this out on their own.
So glad you liked the dressing from the chicken salad recipe, it is one of my favorites!
xo,
Heidi
Incredible post Heidi! I'm speechless – I think you said everything! Really, I'm in awe at how many foods your family reacts to. This has to be difficult. Thanks for sharing all of this, I'm going to spread the word on this post.
thank you Heidi
What a comprehensive post Heidi! I am saving this to refer others to. Thanks for taking the enormous amount of time I am sure it did to complie this.
xo,
c
Wow!! This post is an amazing wealth of information. I read this once but I think I need to read this a few times yet….also want to look up all the references you cited…
thanks for the time and energy put into this post. it's chocked full of fantastic info… will share with others!
Hello Heidi,
You did an absolutely amazing job on this post and I'm sure it's going to help many that are suffering needlessly. Your uncle would be proud, I'm sure.
I'd like to clarify a question you had:
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).
That diagram was just an example to show someone the difference between what happens in the case of a cross-reactive food vs. a non-reactive one. They could have used any of the possible cross-reactive foods as an example, they just happened to choose rice as non-reactive and casein as reactive.
I hope that makes sense!
To your good health,
Dr Vikki Petersen
Well…I think if you were working on a Master's you would have just written your thesis! Holy Shmagoly! Seriously. You have just created such an amazing wealth of information for people. I need to go back and read this a few more times in order to grasp everything, but you have really really out done your self. You should have put the whole article in "Printable" format so that people could print it out and show it to their doctors and their family and friends.
And for the record…I have NO idea how you manage to find the time to create a post as comprehensive as this! This was truly truly amazing!
Hugs and huge kudos to you, missy
xoxox
k
Hello Heidi
Unbelievably thorough step-by-step Summary of what you and your family has gone through.
Taking the time to do this is going to be an excellent support for those who find their way to your site to understand the 'Conundrum of Gluten Sensitivity'. You have accurately portrayed the state of the Celiac/Gluten Sensitive world where we have 'experts' in one field, and their Assistants demeaning and making sincere people asking questions feel horrible. Your perseverance is commendable and you will help hundreds (if not more). You Go Girl!
Just asking the question "why is it that the average, not the unusual, but the average, is that a Celiac patient has been to 5 or more Health Care Practitioners, and have been suffering with recognizable symptoms for 11 years before they received an accurate diagnosis"? How could that be? I agree with Drs Ford and Peterson that we have territorial defenses blinding open communication.
Thank you for your hard work.
Tom O'Bryan
Thank you Dr. O'Bryan, that means a lot to me.
And thank you for sharing the story about your Godmother on the 2010 Gluten Sensitivity and Celiac Forum DVD, it moved me beyond words (as well as your entire talk, you are a compelling speaker). I think I walked around chanting "Heal the gut, Heal the gut" for at least a week, LOL!
Best,
Heidi
What a wonderfully informative article Heidi! Your blog is one of a kind; I appreciate the hard work you put into everything you share with your readers.
This post has given me lots to think about. I won't lie, I'm pretty worried about some of it. Thanks for the time you put into this and the links you provided!
I really think you should be getting your doctorate. Seriously! You do more work and know more than most doctors. And, I agree with Kim. Where they heck do you find the time to do all of this, write about it, and take care of your family? It's crazy, I tell you. Just crazy!
BTW, why is it always up to me to point out the obvious? Did know one else notice this very, very important fact? It looks like both the boys are not reactive to coffee. So, I say, load 'em up!
Hugs and healing intestine thoughts!
xoxo,
Tia
ROFL! Don't tell anyone, but my boys do like their weekend coffee (does that make me a bad mom?). 😉
My comments:
I am relieved to see so many people sorting out the confusion about gluten, celiac disease and non-celiac gluten sensitivity. Seems the medical profession in general is once again behind about 15 years. I am continually disturbed by the abysmal diagnosis competence of the average clinician to help people suffering from gluten poisoning.
A recent study out of Italy talks of the differences between CD and NCGS. BMC Med. 2011; 9: 23 Sapone et al (Bio Med Central) “Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity”. Fasano is a named author but appears to be a minor contributor. His name lends important credibility however.
I don’t recommend the magazine “Gluten Free Living” for my patients. Their pages repeat too many antiquated concepts such as you shouldn’t start a gluten free diet without a confirmed celiac diagnosis. That was from 2011. I dedicated a couple of blogs and 4 videos explaining why that is not just wrong but is damaging advice. The above article explains their rational for stating that at least 1 in 15 in North America is gluten sensitive. I do recommend the magazine and website “Living Without”, however. They are far more progressive in their thinking.
I am a fan of the work of Marios Hadjivassiliou of Sheffield England. His research focuses on the effects of gluten-related antibodies and brain lesions and malfunction.
Acta Neurol Scand. 2010 Apr 15. “GAD antibody-associated neurological illness and its relationship to gluten sensitivity” Hadjivassiliou M et al.
I have observed a curious phenomenon in science. An idea like CD affecting far more people than was initially thought is proposed. The entrenched establishment fights this vigorously. Finally enough evidence persists so this becomes mainstream thought. Then this group that was slow to accept CD in the first place embraces it and makes it their own and fights anyone who proposes anything different. In this case the different idea is the evolving notion that far more people than have classic CD also need a gluten-free diet to be healthy.
Nice blog. Thanks.
I am trying unsuccessfully to get my kids to give up milk and I was just thinking maybe I could switch them to coffee…
Heidi- So interesting! You have done an amazing job with this post. Thank you.
I developed casein symptoms a few years after feeling great on gluten-free only. I've been gluten-free dairy-free since mid 2007. Now I am reacting to sorghum, beans, guar gum, high FODMAPs (veggies and fruits with certain sugars). I avoid sugar 99%.
I will share this post link on Facebook and Twitter. xox
Thank you so much Karina. I have been fascinated by your story and I've thought of you often as I've read through countless hours of research. Thank you for all that you do for our community, you're a lighthouse in the fog for so many of us!
xo,
Heidi
Heidi, this is wonderful and valuable information.
thank you for sharing it– all of it! oxxo
Thanks Steph!
xoxo,
Heidi
Great post Heidi. As usual it's incredibly thorough and you share so many resources with us. I believe every bit and it doesn't really surprise me that much. My sister-in-law has scleroderma – diagnosed 3 years ago. She's had celiac disease for almost 30 years. And been on a gluten-free diet that long. Clearly she was consuming something else, or her gut wasn't healed. I find it sad, but also fascinating. There are some obvious reasons as to why she developed a second auto-immune disease (i.e. not a gluten-free household), but there are still some unanswered questions. Anyway, I am doing all I can to make sure Pete stays healthy. I want him to be around and healthy for a looooong time 🙂 Thanks for helping me and countless others. You're on an incredible journey. Love love love and loads of blessings to you. xo
Thank you Maggie.
I have a friend who was dx'd with celiac 15 years ago and she just recently developed Graves' disease. I've told her that she should look into some of these tests but since her celiac panel has come back normal since she went on the GF diet, she doesn't think this could be an issue (but the celiac panel is not a test for leaky gut). I understand that she doesn't want to remove any more foods from her diet (I certainly wasn't excited about it), but I prefer to see it as a small price to pay if it allows a person to finally heal (once and for all) and just move on with their life, ya know?
You are a wonderful wife Maggie, and Pete is lucky to have such an amazingly supportive spouse (I pinch myself everyday that I have Mike, I really don't know if I could do it, if there shoes were the other way around…it took me 3 years to go GF and I have celiac, LOL! I'd like to think that I would have eventually come around though).
xo,
Heidi
Thank you so much for such a detailed post! I have recently found I am gluten-sensitive at the very least (celiac bloodwork came back negative), and so am doing the 3-month, "take out all your sensitive foods" diet that you describe above. It is VERY hard. But it is helping. I just found your blog, so you can bet I will be following you! 🙂 Thanks again!
–Amanda
Wow! This is fascinating and amazing. Thanks so much for sharing. I suspect I need to tweak my diet further; I just went gluten-free two weeks ago, and I do feel better, but I do know from experience that I am also sensitive to corn, sugar, and dairy. I wish we knew more about how this all works together. This article is a great start!
I have the privilege of getting to know a very astute gastroenterologist here in Little Rock who is starting a coalition of doctors and chefs to further evaluate these very kinds of things, and help people feed themselves in a healing way. I've passed this along to her.
Great work!
I'd love to know the contact info of this doctor in Little Rock.
I'm wondering about the gluten cross reactivity list. We don't eat any of the things on that list anymore and haven't for some time. EXCEPT for quinoa. And there are certain brands that did cause reactions, but one certain brand tests free of gluten, no gluten in their facility, yadda yadda. So…my thought is…do you think that those foods are commonly contaminated with gluten, thus making them cross reactors or do you think that if it was a pure uncontaminated source it would test the same way?
Since my positive celiac panel my Dr. has been pushing for me to do the cross reactivity screen, I just don't have the $ for it at the moment. I know for sure I cannot drink coffee, I get the same symptoms as when I eat gluten. I also have to be careful with chocolate and I've been suspecting something else, possibly corn 🙁 Thanks for posting this, guess I'll do the testing soon!
Great post! I've done the Cyrex Assay 4 and found that I feel much better when I cut out those things I reacted to. My kids were so glad we couldn't eat quinoa any more, lol!
I have a question – you mention your skyrocketing serum iron levels and that they were tied to autoimmunity. Can you tell me any more about that? I have autoimmune problems, and after being anemic my whole life, my iron levels came back very high in my last bloodwork and no one knows why.
I can identify with the "obsessive mission" to figure this all out. Sometimes I feel like all I do is research, but blogs like yours help me confirm that I'm on the right track.
Thanks!
ROFL Tammy…my kids said the same, they really do not care for quinoa much!
My iron level has since normalized, but it was on the rise for over a year. I was referred to a hematologist to test for hemochromatosis (you can learn more here: http://www.hemochromatosis.org/), but thankfully some major dietary changes I made (during my 2 month wait to get into the doctor), seems to have done the trick. I removed all red meat and legumes, as well as citrus and sugar (which can increase iron absorption) and I increased my egg consumption (eggs actually inhibit iron absorption by up to 28%). You can read more about "Achieving Iron Balance with Diet" over at the Iron Disorders Institute.
Low and behold when I saw the hematologist two months later, my iron levels were perfect! I have since added back red meat once or twice a week plus citrus and eggs but I rarely eat legumes anymore and I avoid sugar like the plague (except for the natural sugars in fruits and vegetables and an agave sweetened treat every once in a while).
There does seem to be a connection between celiac and hemochromatosis, Jefferson Adams discussed it a little bit on celiac.com
Keep up the research Tammy, but don't forget how to live in the process (I really got sucked in and missed a lot of special moments in the process).
Hugs,
Heidi
Heidi,
Thanks for the links! My high iron showed up about a year after I went strictly gluten free and 6 months after starting a "paleo-ish" diet with lots of red meat. I'm waiting on some bloodwork to see if it's still high. If it is, I'll at least be armed with information. 🙂
Tammy
Great post! Thanks for taking the time! the Array 4 is on my list of tests to get, but now I realize I need to get the Array 3 done also!… like your Doc, I now know more about my disease than he did. he never recommended get new blood work… I now know I need to check that out, since I don't get symptoms either…
Thank you so much for this post! I'm less than 2 months into living gluten free after my celiac diagnosis. I've been really good, so I was surprised that my sinuses completely filled up and cramping started after my perfectly wonderful gluten free dinner. But when I saw this list of cross reactive foods, it all made sense! Everything in the dinner except for the steak was on the list. I'm on my second day of cutting out the foods on the cross reactive list and already my sinuses are clearing up. Thanks!
Just wondering if you have read or seen any research on grain fed meat and CD? I'm a vegan coeliac and recovered really well from my initial state at diagnosis. I'm a super sensitive and discovered a few years ago that wheat proteins in skin and hair products gave me a rash and gut reaction which my Dr thought was impossible!
Heidi,
Thank you for this. I am especially curious about the cross-reactive foods. I have considered going Paleo but just couldn't bring myself to. I love my morning coffee…probably too much so! I do love tea though. 🙂 I have horrible sinus/allergy problems and I have been having gluten symptoms even though I am trying to be extra vigilant. I do not live in a gluten-free dedicated house. My husband & oldest daughter still eat it. My two youngest & are gluten intolerant & I can't tolerate dairy either. It is all so frustrating. Thanks for taking the time to give such detailed information and sharing your personal experiences. I could sit all day and read past posts!
I have been on Claritin D for over 20 years and have been on weekly allergy shots since I was 14, also using various nose sprays. I went Paleo in May and have not taken a single allergy med since then! That is during spring time in England! I still have morning coffee, no sugar and added coconut milk. My house is not all Paleo however which makes cooking hard. I am Paleo, my husband is GF, soy free, nut free, my son is Celiac and my daughter is vegetarian. They all suffer horrible sinus allergies and although they have seen the change in me, they will not go Paleo. My poor celiac son says he has "given up enough already". I want him to go Paleo before he develops another auto immune disease. My mother has MS, her mother had Chrons, that's why I do it. I try to get them off dairy at least to see if they have improvement. They all say they can give up milk but not cheese. I only hope and pray they see continual improvement in myself and think, "Hey, I want to feel that good" It's really hard when your husband is not on board. He loads them up on sweets and ice cream.
I know exactly what you are talking about when it comes to your husband! I struggle with the same things. It is very trying and frustrating, especially when my husband does not have the food issues that me and two of our kids have. I think after reading this and everyone's comments that going Paleo is the only option for me. It is difficult because when we tell ourselves that we have given up so much already, it is hard to accept. I feel like garbage at this moment and am so bloated and my sinuses are a mess! Part of my problem is that I have not been diagnoses with celiac & I get a lot of flack for cutting things out of my diet without "proof." Believe me, I have LOTS of proof! 🙂 Thanks for giving me a little ray of hope Heidi & Wendy!!
I went GF when my son was diag. but my tests were negative. I just think the doctors are still learning so much. We have auto immune in my family and I thought maybe if I went GF it would prevent me from getting one later in life. This was 3 years ago and I just find that thought process becoming more and more valid but at the same time learning that I need to eliminate more foods. Like others have posted, not too hard to give up grains if maybe it prevents me from getting MS later in life.
My tests were negative too but I kind of went about it backward. I found out about gluten sensitivity & cut it out and then was blood and biopsy tested. It doesn't really matter as I know what it does to me. What scares me is the auto immune thing. I have a lot of stuff in my family, such as ALS and I don't want it. I would like to be as healthy as possible so that I won't wonder if I could have done anything differently if I do happen to get it or any other number of things! Do you recommend any paleo resources to get me started? I have come across Nikki Young's ecookbooks & plan to try them out. Thanks for any suggestions!! 🙂
can you email me directly? wendynorlin@me.com Then I can forward you information outside of this discussion page.
Heidi, I agree with everyone else that this post is incredible in its scope and thoroughness. I so appreciate you sharing your family's personal data with us because it makes the date "real." We can actually see the test results in black and white and not just read a high-level description. I don't totally understand the cross-reactivity information, but I do "believe" it because I've found that I have issues with a number of these grains that should be fine for me to eat. (And they are not ones that could be contaminated with gluten.) Thanks so much for including my words in your post! My only regret is that I didn't get all my "talking points" in since you were going to quote me with all these worthy info. 😉 Seriously, Heidi, thanks! It always says a lot to me that you have such a wonderful mix of readers who are willing to share their experiences and discuss/entertain new ideas on gluten issues. I always learn so much from your blog and from your Facebook page, and it's clear that everyone else does, too. We are all indebted to you, Heidi!
Shirley
Thank you Shirley, it has been my sincerest hope that by showing our family's test results in black and white (and not just typing out the results), it will add a certain level of "realness," if that makes any sense. I don't fully understand the cross-reactivity either, but like you said, so many people notice they have problems with a lot of these foods, even if they are certified gluten-free. It can make a person crazy thinking they are always getting "glutened," when technically speaking, they are not…but their reactions speak otherwise (and maybe now we know why). What really makes gluten cross reactivity even more plausible to me (regardless of what "the experts" say), is that cross reactivity has been well established with other types of food allergies, as well as latex. So why couldn't there be gluten cross reactive foods too?
I learned a lot when we used Enterolab for Luke last summer, just because Dr. Fine hasn't submitted his research to the peer review process doesn't make it invalid, it just means he hasn't submitted it to the peer review process. An awful lot of people (including my son) have been helped by those tests and in the end, that is all that matters, right? 😀
Your quote was awesome Shirley, you laid out all the important (and contradictory) talking points perfectly, I could not have said it better myself! And I agree, I have a wonderfully diverse set of readers, who really get involved in the conversations I try to spark. I really take this old adage to heart: "the only stupid question is the one you don't ask."
If you look back over history, every great leap forward has always begun with the same question: What if?
xo,
Heidi
Thank you! I am suffering from Myasthenia Gravis (genetically similar to Celiac) and know that gluten causes inflammation in my body, though I just tested negative for Celiac with the TTg -AB and Ab IgA tests – I can feel it! I did however react to gliadin on the adrenal stress index saliva test you wrote about. Lately even rice and other gluten-free grains make me feel horrible. I only feel good when eating a raw food diet or by juice fasting. Your info on gliadin and cross-reaction foods is immensely helpful in my quest to get to the bottom of this. Thank yoiu, thank you, thank yoU!
Thank you. I feel validated! I had Chinese roundworm after travelling in Tibet but wasn't diagnosed for 5 years. During the infestation I developed ncgs and severe IBS symptoms that mimicked coeliac yet theblood test was negative. I would have killed for your cross-related food lists: coffee, chocolate, carbonated drinks, yeast all acted as triggers for an attack. 3 years aftertreatment & diagnosis I still suffer attacks & reactions to food triggers and was astounded by your findings that the intestine can show changes- mine clearly does. In the last 3 years I have also been diagnosed with sebborhagic dermatitis and am currently awaiting thyroid test results. Your research confirms my intuition – that my body has been changed by my experience and my immune system may well have been too.
Hi Em!
Here is a little more validation for you: there have been documented cases of parasites causing villous atrophy like that seen in celiac disease patients (similar to that in the paper I shared on cows' milk enteropathy in my post).
See Pseudo-obstruction and a sprue-like syndrome from stronglyloidiasis (Strongyloidiasis is infection with the roundworm Strongyloides stercoralis).
Also see Role of parasites in the pathogenesis of intestinal malabsorption in hookworm disease and Functional and Structural Studies of Small Bowel in Ankylostomiasis Ankylostomiasis, also known by several other names, is the disease caused when A. duodenale hookworms, present in large numbers, produce an iron deficiency anemia by sucking blood from the host's intestinal walls (Wikipedia)
Best,
Heidi
I too sooooo appreciate all that you share Heidi! I did not see Teff on the list, should I assume that it would not be an issue and would be safe when eliminating all the other grains and foods or is it just not common and so not tested? Any thoughts?
I know you are not a doctor, but if my blood work shows my c-reactive protein is low, isn't that an indication that I have very little inflammation? Would that indicate that potentially my leaky gut was healed?
Heidi,
Great post! I am struggling right now as I can't get my numbers down either on my bloodwork. It's only been 6 months but I've had bloodwork down twice (once at 4 months, again at almost 6). My numbers at six months had actually gone up from what they were at 4 months! My ttg levels are going down but not the deamidated iga or igg. I really think I'm being careful. Are you saying that my numbers staying high might be due to cross reactive foods? That if I test positive for cross reactive foods and avoid them for 3 months, not only can my gut heal but my numbers will come down on my tests? Fascinating!
Dear Heidi,
THANK YOU for writing this article. New to the cross reaction conondrum this article is extremely elucidating.
Love your 'can-do-will-fix' attitude 🙂
I had this test done and I was sensitive to all the dairy and then the Tapioca. All the other test came out in range. I don’t mind being gluten free but miss bread. The gf breads all have tapioca in them. I can make my own but I am not a baker lol. I guess I will have to become one or get a gf bakery to make it. I have been gluten and dairy free for close to a yr and I feel alot better. I can definitley tell if i eat anything dairy or gluten. I am starting to wonder if I am sensitive to soy also. I didn’t see that on the list but seem to have reactions some similar reactions to it. I went to many docs before I found my Chiropractor/wellness center doc. I just never knew any of this existed with being sensitive to foods. Heidi after I see what you and your family is sensitive to I don’t feel so bad. It must be such a struggle to find stuff to eat. Sounds like you are doing well with it. I never thought about health and beuty aids either like shampoos etc. I was like they r on your head how can that affect you but by your blog they really do. Glad I found this we page. Thanks for all the vital information and hope it helps people who don’t know where to turn.
Take Care & God Bless
Heidi, I’m also a biopsy confirmed celiac. I have it in the classic form. Diagnosed January 1988. I spent 2 weeks in the hospital being treated for malnutrition. I follow the gf diet as prescribed. The only thing I need to exclude from my diet is lactose. I am severely lactose intolerant!
My aga iga is 0
My aga igg is 0
My tTg is 3
My bloodwork consistantly stays like this. My Dr. tests me once a year.
I have a shared kitchen. I’m careful, but not paranoid. Maybe my bloodwork is better than yours because I have been gf much longer than you. I don’t know…I have heard that coffee is cross reactive, but I drink it every day. I’m not giving it up!
I have arthritis really bad and a little over 3 years ago I had to have part of my colon removed due to severe diverticulitis and a volvulous. Dr.s tell me I don’t eat enough fiber Last year my gallbladder was removed. It was full of small stones and terribly inflamed.
Anyhow, good luck on further lowering your antibody levels. Maybe it just takes time. The Dr. who checks my bloodwork for dietary compliance is newer. My first Dr never checked.
Thank you for this post! I went gluten free recently by starting out on an Elimination Diet and gradually adding things back in. I do not eat gluten, dairy, or soy, and do much better with starchy vegetables instead of grains at all, but I reacted particularly badly to quinoa when I was first introduced to it – now I know why! I have shared this with my Mum as she has had issues with rice.
I admire your tenacity in research. I have Hashimoto Thyroidits – diagnosed 5 years ago. I was diagnosed with breast cancer a year later. I was on a mission to understand how my health was deteriorating when I considered myself an aware health nut. Well, autoimmune diagnosis has made me aware that I knew nothing about being a health nut. I found myself in the office of a chiropractic neurologist who insists on taking all the Cyrex lab tests – wheat gliadin, leaky gut and cross-reactive in order to be a patient of his. I tested positive for the wheat gliadin breakdowns, leaky gut and a few cross-reactive foods. His advice is to never give into temtation or cheat – “It’ll kill you.” is his quote. I currently am working with a chiropractic group whose adjunct specialty is thyroid and diabetes. I am a big fan of Cyrex labs and have spoken with Jama Lambert, too. She indicated that the staff and founders of this lab have personal histories of gluten’s negative influence on their health and the passion the founders, especially, have in bringing the connection of autoimmune diseases and gluten/leaky gut into mainstream knowledge. For now, it’s within the ranks of chiropractors. You may want to pursue the Apex REpairvite, Clearvite, GI Synergy, Strengthia and Interphase supplement and diet regime to see how your labs turn out. This was also part of the regime of the chiro. neurologist – as well as the chiros treating my thyroid. Get cleaned up within your intestinal track and your body will thank you. Barb. J., Idaho
You need to look at Paleo/Primal or Gaps diets. Grain-free, gut healing diets.
I just had my blood drawn today to send off to cyrex labs for array 2,3,4. My dad died of nonhodgkins lymphoma (diffuse large B cell) and I suspect he had celiac.
Thanks for the information. Our 12 year old son has asthma and eczema, and so we took him to a wellness doctor who thought there could be a gluten connection. We received our Cyrex lab results and sure enough, his IgG levels (about 1/2 of them) are higher than range. My concern is that the out of range numbers aren’t drastically out of range, and the doctor insists that *any* gluten will be detrimental. It’s a challenge, because of the age of our son–if he was 3 it’d be much easier to dramatically change his diet. I just feel like it’s hard to find out enough information about the results of this blood work, and I don’t know what to do. Of course, now the doctor wants to run the array 4 test? to determine if there are issues with other foods, but again, there isn’t a drastic stomach problem–there’s slight asthma (genetic) and seasonal eczema. Now, gluten sensitivity did show, but does that mean 100% elimination, or is the occasional piece of bread, etc. okay?
I know your post was written a year ago, but I wanted to say that I, too, have a 12-year old son who did Cyrex Array 4. We didn’t do Array 2, mostly because of the cost factor.
No, an occasional piece of bread is not okay unless all the ingredients are foods that showed no reaction on his labs. Help your son understand that this diet will help his gut heal. Show him YouTube videos that explain how the offending foods affect his body. Take him shopping with you and teach him how flip the wrist and check the food labels. My kids do this everywhere we go. (My second son also had Arrays 2 and 4 done on him and cannot have a variety of foods. Our whole family is eating this diet.) Basically, get him involved so he fully understands the implications of refusing to comply with the diet changes.
Neither of my sons had stomach issues. One son had ADHD, and the other had stunted growth issues. The ADHD has greatly diminished and my 12-year old son has an appetite and is growing on his own (without use of growth hormone treatments) for the first time in his life.
I agree that I wish further info were available because it’s a HUGE commitment of time and money to eat this diet, but I think if you stick with it you’ll be able to see good results eventually. I wish you the best.
My dad’s a chiropractor neurologist. He attended the convention on gluten & other allergens this past year also! His names Dr Ed Beyer. Anyway, he uses both the entero & cyrex cross reactive as well as a few other tests on the patients who take on care at our office. Just from working there i have seen testimonials from patients that have put me to tears on how much their lives have changed since starting care. Im just now hopping on board with testing. I did the entero, getting my cyrex done this week, & am so anxious to find out my results, to start care, and to finally start feeling healthy and happy for the first time in my life. You seem very eager to know more on this subject from reading your article (which i found very interesting!). Im not sure if this will help you to learn more, but this his website.. there’s alot of videos that explain these types of conditions along with good facts. check it out if youd like!
http://tinleyparkbbt.com/
Excellent info, thanks very much. My youngest and I went gluten- and dairy-free years ago and recovered by about 85%. Many of the nagging symptoms improved dramatically a few months after we went totally grain free last August. Still recovering but so SO much better.
Outstanding Post! You’ve covered so much here and many will benefit from your research and personal story. Thank you for sharing Heidi.
Wow! The test results are mind-blowing!
I just had my first visit with a Homeopath (also, an M.D.). Had my blood drawn at the hospital for this test at Cyrex. I’ve been gluten free since July.. as well as organic…non-GMO. And, I’ve managed the “satisfaction” aspect of the diet quite well. I’m now excluding the foods on this list and, to be honest, it’s going to really test me.
While my processed food consumption is quite minimal, I do enjoy my organi/non-GMO/gluten free wraps and chips…it’s going to be tough! Not to mention…CHEESE… that’s going to be challenging for sure…
Dear Heidi, I just came across this post and wondered if you could give me your two sense on our situation. I will try to be brief. 🙂
My 14-year-old son has struggled with moderate-severe eczema for the last three years. After traditional routes yielded no healing, we sought the counsel of a chiropractic neurologist who has a great deal of knowledge in functional medicine. He is anti-gluten/pro-paleo, and immediately suspected that my son has a gluten sensitivity. He ran blood work through Quest Diagnostics. At our next appointment, we did not view the lab results, but we were told that my son, does indeed, have a gluten sensitivity. We began going gluten free with him. Very little change in his eczema.
We then ran the Cyrex Cross Reactive (Array 4). The only “out of range” items were casein, cow’s milk, and whey protein. (and they were NOT way out of range). Milk chocolate and eggs were equivocal. Everything else was in normal range.
We made dietary changes accordingly. No real change in eczema.
Eight months later, we are seeking the counsel of a Naturopathy Doctor. This week she reviewed my son’s history and lab work. We discovered that his original Gliadin Antibody (IGA) test was NEGATIVE. (my son’s result was <3 with <11 being negative) His Gliadin Antibody (IGG) test was ALSO NEGATIVE. (4 with <11 being negative) HLA typing for celiac yielded TWO NEGATIVE results, as well.
We are very confused. With those lab results, we can not see how Doctor #1 came to the conclusion that my son was gluten-sensitive. It makes the cross-reactive testing even more confusing.
I have emailed Doctor #1 to inquire, but have not yet received a response.
If you have any insight, I would greatly appreciate hearing it.
Thank you so much! 🙂
I know in my heart that I have a problem with gluten and probably other things. Most of my life I’ve felt incredible fatigue and have had depression and mood swings. I don’t lead a normal life. I sleep most of the time. I’m trying to cut out gluten and dairy but have just recently read about grains in general and cross reactive foods. It feels overwhelming trying to overcome this problem on my own and on a low income. I wish I could afford the Cyrex tests.