Gluten Cross-Reactivity UPDATE: How your body can still think you’re eating gluten even after giving it up.

March 13, 2013 in Categories: , , , , , by

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The Paleo Approach by Sarah BallantyneIn my research for The Paleo Approach, I feel that it is important to provide scientific references for every single statement I make.  This has me doing a great deal of fact checking, scouring the medical literature to verify information often gleaned from other paleo authors and bloggers.  Most of the time what I find out just helps reinforce concepts, filling in blanks, and typically making a strong case for my assertions.  But, every once in a while, I find information that makes me completely reevaluate a concept and sometimes even an aspect of the autoimmune protocol.

The update for this blog post comes from my further examination into the science behind gluten cross-reactivity.  While there are plenty of papers confirming how cross-reactive antibodies can be formed, I could not find any published studies confirming the results from Cyrex Labs (and my motto with the paper is if I can’t cite it, I don’t say it).  I contacted the company to request further information (I was particularly interested in the reported cross-reactivity to tapioca as I was trying to decide whether or not tapioca starch and/or pearls should be included in The Paleo Approach).  Cyrex labs responded quickly and informatively and my level of esteem for that company (which was high to begin with) elevated another couple of notches.  While they were unwilling to share proprietary data with me, they were able to point me to a recent publication that evaluated gluten cross-reactivity and share a summary of their proprietary findings (the paper did not show up on my PubMed searches).  As I devoured the paper (figuratively, not literally), I realized that an update to this post was required.  This is not an excerpt from The Paleo Approach but it is a direct result of my research for the book and much of the information that follows is still presented in it.

For those 20% of us with celiac disease or gluten-intolerance/sensitivity (whether diagnosed or not), it is critical to understand the concept of gluten cross-reactivity. Essentially, when your body creates antibodies against gluten, those same antibodies also recognize proteins in other foods. When you eat those foods, even though they don’t contain gluten, your body reacts as though they do. You can do a fantastic job of remaining completely gluten-free but still suffer all of the symptoms of gluten consumption—because your body still thinks you are eating gluten. This is a very important piece of information that I was missing until recently.

Proteins are made of long chains of amino acids (small proteins may only be 50 amino acids long whereas large proteins may be 2000 amino acids long) and it is the specific sequence of these amino acids that determines what kind of protein is formed. These amino acid chains are folded, kinked and buckled in extremely complex ways, which gives a protein its ‘structure’. This folding/structure is integral to the function of the protein.

An antibody is a Y shaped protein produced by immune cells in your body. Each tip of the Y contains the region of the antibody (called the paratope) that can bind to a specific sequence of amino acids (called the epitope) that are a part of the protein that the antibody recognizes/binds to (called the antigen). The classic analogy is that the antibody is like a lock and a 15-20 amino acid section of a protein/antigen is the key. There are 5 classes (or isotypes) of antibodies, each with distinctive functions in the body. The IgE class of antibodies are responsible for allergic reactions; for example, when someone goes into anaphylaxis after eating shellfish. The two classes IgG and IgA are critical for protecting us from invading pathogens but are also responsible for food sensitivities/intolerances. Both IgA and IgG antibodies are secreted by immune cells into the circulation, lymph, various fluids of the body (like saliva!) and tissues themselves. And both IgG and IgA antibodies are found in high concentrations in the tissues and fluids surrounding the gut (this is part of why the gut is considered our primary defense against infection).

The formation of antibodies against an antigen (whether this is an invading pathogen or a food) is an extremely complex process. When antibodies are being formed against a protein, the antibodies recognize specific (and short) sequences of amino acids in that protein. Depending on how the antigenic protein is folded, certain amino acid sequences in that protein are more likely to be the target of new antibody formation than others, simply because of the location of that sequence in the structure of the protein. Certain sequences of amino acids are more antigenic than others as well (i.e., more likely to stimulate antibody formation). This is also part of why certain foods have a higher potential to cause allergies and sensitivities.

Understanding that antibodies recognize short sequences of amino acids and not an entire protein is key to understanding the concept of cross-reactivity (and molecular mimicry, but that’s a topic for another post). It also is the reason why many different antibodies can be formed against one protein (this redundancy is important for protecting us from pathogens). Many different antibodies can also be formed against one pathogen or, more relevant to this discussion, one specific food.

So what happens in cross-reactivity? In this case the amino acid sequence that an antibody recognizes is also present in another protein from another food (in the case of molecular mimicry, that sequence is also present is a protein in the human body). There are only 20 different amino acids, so while there are millions of possible ways to link various amount of each amino acid together to form a protein, there are certain amino acid sequences that do tend to repeat in biology.

The take home message: depending on exactly what antibody or antibodies your body forms against gluten, it/they may or may not cross-react with other foods. So, not only are you sensitive to gluten, but your body now recognizes non-gluten containing foods as one and the same. Who needs to worry about this? Any of the estimated 20% of people who are gluten intolerant or have celiac disease, i.e., have formed antibodies against gluten.

A recent study evaluated the potential cross-reactivity of 24 food antigens.  These included:

  • Rye
  • Barley
  • Spelt
  • Polish Wheat
  • Oats (2 different cultivars)
  • Buckwheat
  • Sorghum
  • Millet
  • Amaranth
  • Quinoa
  • Corn
  • Rice
  • Potato
  • Hemp
  • Teff
  • Soy
  • Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk)
  • Chocolate
  • Yeast
  • Coffee (instant, latte, espresso, imported)
  • Sesame
  • Tapioca (a.k.a. cassava or yucca)
  • Eggs

They did not find cross-reactivity with all of these foods (as is implied by the Cyrex Labs gluten cross-reactivity blood test, a.k.a. Array 4).  But, they did find that their anti-gliadin antibodies (antibodies that recognize the protein fraction of gluten) did cross-react with all dairy including whole milk and isolated dairy proteins (casein, casomorphin, butyrophilin, and whey)—this may explain the high frequency of dairy sensitivities in celiac patients—oats, brewer/baker’s yeast, instant coffee (but not fresh coffee), milk chocolate (attributable to the dairy proteins in chocolate), sorghum, millet, corn, rice and potato.

While not all people with gluten sensitivities will also be sensitive to all of these foods, they should be highlighted as high risk for stimulating the immune system.   Just like trace amounts of gluten can cause a reaction in at least those with celiac disease (the threshold for a reaction has not been tested in non-celiac gluten sensitivity), even a small amount of these foods can perpetuate inflammation and immune responses. This is important when you think of the small amounts of corn used in so many foods and even the trace milk proteins that can be found in ghee.

Beyond this gluten contamination is common in the food supply and many grains and flours that are inherently gluten free may still contain gluten once processed.  Commonly contaminated grain products include millet, white rice flour, buckwheat flour, sorghum flour, and soy flour.  As these are commonly used ingredients in commercial gluten-free baked goods, extreme caution should be exercised.

Cyrex Labs offers a simple blood test that is referred to as their gluten ross-reactivity panel, a.k.a. Array 4.  It tests for reactions to the gluten cross-reactors mentioned above as well as the non cross-reactors evaluated in the paper.  Cyrex Labs reported to me that they see positive sensitivities frequently (many as high as 25%) in many of those foods in people with diagnosed gluten sensitivity.  This may reflect that when you have a leaky gut, food intolerances are quite easy to form.

If you have autoimmune disease (which has a very high correlation with gluten-sensitivity), celiac disease, gluten-sensitivity, or are simply not seeing the improvements you were hoping for by following a standard paleo diet, one or all of these foods may be the culprit. You have the choice of either cutting these foods out of your diet and seeing if you improve or get tested to see if your body produces antibodies against these foods.

When I first wrote this blog post, it made so many pieces of the puzzle come together.  I stopped eating chocolate (I had already given up coffee), fermented foods like sauerkraut and kombucha (because of the yeast content), eggs, and tapioca.  Over the months that followed, I was able to definitely discern that I am very sensitive to chocolate (perhaps because it is extremely high in phytic acid, discussed in this post) and eggs (discussed in this post).  I have successfully reintroduced fermented foods and have not been particularly inspired to test my sensitivity to tapioca (I test by eating a bit and seeing if I have a reaction, most typically my reactions are acne, but sometimes trouble sleeping, mood issues, joint aches, or increased itchiness and redness of my lichen planus lesions).  So, will I give coffee a try now?  Maybe, once in a while as a special treat, but removing gluten cross-reactivity from the list of ways coffee is suboptimal, really only removes one potential problem.  Coffee still has effects on cortisol and still correlates with increased inflammation.  Oh well.  Whether I can drink coffee again or not, I am glad to be able to share this updated information with all of you!

A great overview of proteins and antibodies (and source of protein folding image): http://publications.nigms.nih.gov/structlife/chapter1.html

A fairly technical review of food IgG-mediated food sensitivities: http://www.usbiotek.com/Downloads/information/criticalReview.pdf

Cyrex Labs Array 4: http://www.cyrexlabs.com/CyrexTestsArrays/tabid/136/Default.aspx

Image of antibody binding taken from http://classes.midlandstech.edu/carterp/Courses/bio225/chap17/ss2.htm

A. Vojdani and I. Tarash, “Cross-Reaction between Gliadin and Different Food and Tissue Antigens,” Food and Nutrition Sciences, Vol. 4 No. 1, 2013, pp. 20-32.  http://www.scirp.org/journal/PaperInformation.aspx?PaperID=26626

Thompson T et al. Gluten contamination of grains, seeds, and flours in the United States: a pilot study. J Am Diet Assoc. 2010 Jun;110(6):937-40. doi: 10.1016/j.jada.2010.03.014.

Comments

Thanks so much for this post. I’ve been Paleo for about a year now, after figuring out for myself that I was intolerant to gluten. After being Paleo for a while I indulged in a plate of nachos, and felt like I’d eaten wheat – that was when I first learned about corn and cross-reactivity. Over the weekend my osteopath diagnosed me with leaky gut, major inflammation (what? thought I’d gotten rid of that?), low thyroid and low adrenal function (I also have an autoimmune condition called Alopecia Areata). He confirmed my sensitivity to gluten and corn, but also told me I’m very sensitive to casein and eggs. Well, raw dairy played a small part in my diet, but I had been eating at least 14 eggs a week! Since eliminating eggs four days ago, there is already a *visible* difference in my waist circumference! I can’t believe I didn’t notice how much inflammation was still there! My osteopath is still relatively new to Paleo as well, and is only just learning more about leaky gut, etc. I’ve referred him to your site as an excellent source of information!

Yes, it was my Cyrex Array 4 results (react to everything on the list) that changed my life 4 months ago. Excellent article. Thank you thank you.

Thanks! Now I understand why I had inflammation after eating rice and eggs and drinking coffee. I will be eliminating these too. And I want to ask something, sorry this is not related to gluten cross-reactivity. For 15 years, I couldn’t eat raw garlic and onions. I had to check everywhere I go, if a dish contained garlic or not. If I accidentally ate trace amounts of garlic in a dish, my body would let me know immediately by bloating, gas pain, and throwing out eventually. After going gluten-free for over a month and dairy free for almost a week, I can eat both garlic and onions without any symptoms. I am very happy with this new condition. But, at the same time I wonder how this is possible because this is too good to be true.

Wow, Evren, that’s really interesting. I’m allergic to garlic. I’m working my way towards Paleo. I recently did wheat free for a month and noticed a difference in health but not in garlic. This gives me more ammunition against my cravings and I will get to gluten free (and paleo). Thank you.

Sarah, you do such an awesome job of explaining the science behind statements that other articles and books simply assert without any background – what an asset you are!

So far, 2 months of strictest AIP have made little difference to my lichen planopilaris, but I feel much better overall and know I’m on the right path. My dermatologists know little about diet, so I rely on you (and pubmed) for other strategies – especially since you have a related condition. I wish your book would appear tomorrow! I keep cutting out foods and am now following AIP, GAPS, FODMAP, and thyroiditis protocols (for Hashimoto’s). I’m down to fish and grass-fed meats, lettuce, oils, vinegar and squash. Should vinegar be next? Maybe the fact that I share kitchen tools with my boyfriend is part of the equation – he eats absolutely everything :) This post was extremely helpful – thank you!

The link to the first graphic is broken btw.

Actually, what I think should be next is adding some non-starchy vegetables back in. Maybe expand on your salad greens, try some collards, kale, carrots, cucumber (you can scrape out the seeds), bok choi, chard… I’ve just finished writing a section on the book about the importance of dietary fiber so if you’re too low on veggies, that could be contributing. Also, veggies are a really important source of antioxidants, vitamins and minerals. The skin is the lowest priority organ, so you really need to flood your body with micronutrients to get the skin to heal. Also, in my research I’m showing no reason to avoid the goitrogenic veggies typically recommended for thyroid disorders and long as you are getting iodine and selenium, which you are if you are eating fish, seaweed and using pink salt. I’d also suggest trying out Prescript-Assist as a probiotic. And don’t forget the importance of sleep and stress management.

“Also, in my research I’m showing no reason to avoid the goitrogenic veggies typically recommended for thyroid disorders and long as you are getting iodine and selenium, which you are if you are eating fish, seaweed and using pink salt.”

Glad to read this! I recently reviewed one of your older posts to see what you say about goitrogens and hyper thyroid conditions (a classic: http://www.thepaleomom.com/2012/05/modifying-paleo-for-autoimmune.html). I was thinking I should remove kraut based on that. I feel like it is beneficial for me so I have been resisting removing it. Sounds like I can keep my kraut.

Great info, and great news about the goitrogenic veggies! I’ll look into how much iodine and selenium is needed to counter-balance those. Thank you, Sarah!

Great article! I am intrigued by the cross-reactivity. After not seeing results for months eating paleo (no corn, potatoes also); I realized my sensitivities to the cross-reactive foods. It has made a huge difference along with my severe mold toxicity diagnosis.
Cant wait to read your book. I appreciate all of your scientific references :)

Also, wandering about cocoa and cocoa liquor. Are these considered gluten cross-reactive?

Ok, back to the coffee on AIP. Were you recommending avoiding it because of the gluten cross reaction possibility, or because its a bean (or is it more a seed?) ? Meaning, if the cross reaction is no longer an issue, is it still not AIP friendly? I understand the other issues surrounding why it might not be optimal, but do you think maybe a cup or two in the weekends only might be ok, if tolerated?

So, coffee is still inflammatory. It still spikes cortisol and causes an exaggerated cortisol reaction to acute stress (so your cortisol goes up even higher after a guy cuts you off in traffic than it would of if you had skipped the coffee). BUT, I think that if your disease is well managed, your sleep is great, your stress is low, and you want an occasional cup, I now think that’s probably okay (was that enough caveats?).

Very Interesting! Thanks for writing this…..

Do you have a recommendation for a good “bread” that does not contain the above ingredients? We have been making a coconut/egg bread at home, but now I am wondering if there is anything “bread-worthy” that does not contain one of these ingredients.

Thanks again!

I’m not sure I’ve seen any bread recipes without eggs. I suppose some recipes you could use an egg replacer like flaxseed, but I’m not sure that’s really a very healthy alternative.

Thank you! I already know that I can’t deal with chocolate. Still, I’d like to know if non-dairy chocolate is also cross-reactive. So, after elimination and the gut heals, some of this can be tested again (provacation)? I’m hoping I can add eggs back in after a while.

At risk of sounding really, really dense, will you please clarify: The only items on the list that were found to be cross-reactive were all dairy including whole milk and isolated dairy proteins, oats, brewer/baker’s yeast, instant coffee (but not fresh coffee), milk chocolate (attributable to the dairy proteins in chocolate), sorghum, millet, corn, rice and potato? SO….. The other things in the list of 24 items were NOT found to be cross-reactive?
Thanks for your help and for ALL you do. I trust you and your information implicitly, as you are so focused on evidence-based practice! I really appreciate you looking into all of this for us.
One more quick question: “Nutritional yeast” is different than bakers/brewers yeast, correct?

That’s right. The other things on the lists were not found to be cross-reactive, BUT they do appear to be fairly common food sensitivities in people with gluten intolerance and/or leaky guts. So, just because they aren’t cross-reactors doesn’t mean that they are automatically fine for everyone to eat.

Nutritional yeast is actually the same strain as baker’s/brewer’s yeast. So, that’s out too. :(

I wanna find some replacement for the cheese(still don’t understand, is aged cheese paleo or not?), and I found DIY Paleo “Cheese” with nutritional yeast. Now I saw your comment and… so upset… May be you have another replacement for the cheese, haven’t you?

Is anyone else confused about fermented foods? Nearly every naturopath says that fermented foods are important for healing the gut, but this post (and thank you again, Sara, for finding and reporting such useful information!) suggests that fermented foods might cause cross-reactive symptoms–since (if I have this right) all fermented foods could contain yeast? Is that right? If that’s so, it might help to explain why I have had no improvement on the AIP, since I have been eating a lot of fermented foods–thinking they were good for me! If Sara or any readers have experience or clarification on this issue, I would really appreciate it.

I am highlighting yeast sensitivity in the troubleshooting section of my book for this exact reason. Certainly, this doesn’t apply to everyone with autoimmune disease,but there is probably a good fraction of people out there who won’t be able to tolerate natural sources of probiotics for this reason. There is more yeast in kombucha or kefir than fermented vegetables, so you might keep an eye out for more dramatic reactions or symptoms of your disease when you have those. Maybe try 2 weeks without any fermented foods and see if that helps anything.

Thanks. I’m glad that you’re addressing this. Fermented foods are powerful–for good and (sometimes) for evil. More is not always better. I think that some folks can forget that!

Hi Sara! Does this apply to home made coconut yogurt? And does it make a difference if you use yogurt starter instead of milk kefir grains? I have wanted to try your recipe for a while now. Is there still yeast in that yogurt?

Is it possible to get anything probiotic without getting the yeast?

If you u a yeast free starter (or a yeast free probiotic supplement as a starter), then you can make coconut milk yogurt without yeast. If you make it with kefir though, it will have yeast. Food sources of probiotics will all have some yeast in them.

“Cyrex Labs reported to me that they see positive sensitivities frequently (many as high as 25%) in many of those foods in people with diagnosed gluten sensitivity. This may reflect that when you have a leaky gut, food intolerances are quite easy to form.”

So if you have healed your gut, is there a need to worry about cross-reactors? Of course, that assumes you have a way of knowing if your gut is healed. I have reason to suspect I have had leaky gut in the past and have tested positive for sensitivity to wheat, corn, barley, rye, buckwheat and some non-grain foods (but not dairy, oats or chocolate).

If your gut is really healed and your immune system has calmed down and you are avoiding foods with potential gut irritating proteins in them then yes, you typically can add those foods back in.

I assume that this wouldn’t apply to people with coeliac disease (as opposed to non-coeliac gluten sensitivity) though? Wouldn’t they need to avoid them completely as the immune response to gluten (and gluten pretenders) is permanent? Keen to hear your thoughts.

Thank you so much for this! it’s perfect timing, because I’m writing up a post about kombucha, and since bakers/brewers yeast is so different from the beneficial yeast in fermented foods, I had a hard time believing that all yeast was cross-reactive. This report showed it’s not. Like you, I do a lot of research before writing a post and couldn’t find any information about this until today. You rock!

After posting, I read through the comments and saw your mention that nutritional yeast is the same as bakers/brewers yeast. I did some searching and see that the yeast in kombucha varies from scoby to scoby, but is often bakers/brewers yeast as well. Shoot! Well, I’ll include the information in my article. I realize not everyone is sensitive, but it could explain why some people are. I’m looking forward to the yeast section of your book (and your book in general.) Thanks for all you do, Sarah!

Feeling very luck that I found SCD first…all but two of the above (seseame and eggs) are out! I’d always felt weird about the lack of science behind SCD…and we’ll, here you go…filling it in bit by bit. Thank you.

I’ll start today with a pause on fermented veggies.

Wow, what a great right up, thank you so much! I have an auto immune disease ( Chronic Lyme disease, adrenal fatigue, etc.) and just recently had food sensitivity testing done. I’m a known Celiac and tested highest for Almonds, and then Peanuts ( which I haven’t been eating for 2 1/2 years). Then I tested a +1 for all beans ( again hAvent eaten them for nearly 3 years), cashews, chili peppers, COFFEE, CORN, cranberries, EGGS, Garlic, oats, pecans, pineape, pumpkin, radish, sesame, tomatoes, walnuts. And BOTH BAKERS AND BREWERS YEAST. So I found your information on cross reactivity very interesting. I have noticed since eating Paleo I can tolerate some dairy ( non homogized whole cream or milk) with no problem and the testing supported that. I highly recommend people with celiac get tested for food sensativitiez or cross reacting foods. I’m on an elimination diet of those foods now for 6, 9 or 12 months depending on the severity ( under the dire toon of my Naturopath). I’ve been looking forward to blogging about my experience and think I ll share a link to your article. I’m not a science or largely educated person. Just a momma who wants to share my experience with others. Thanks again for a great article

I just took the Cyrex Labs Array 4 test because my alopecia areata keeps coming back even on a paleo diet. It was hard to see if doing the autoimmune paleo protocol would work because it takes so long for the hair to grow back anyways. I found that I have sensitivities to rice, potatoes, I also have an equivocal (semi) response to eggs, phew at least eggs aren’t totally out of the question. But what is interesting is that even though I consumed tons of dairy for the test to see if I had dairy sensitivities, all of the dairy results came back negative. So two questions for you.

1. Does this mean that grass fed dairy can still be eaten like butter along with occasional aged cheeses and yogurts?
2. Since I have sensitivities to potatoes, does this mean that I probably have sensitivities to all nightshades?

Thanks for your reply in advance, its hard to find people who understand these issues like you do.

1. Yes, you are probably okay with dairy, especially if you stick with grass-fed raw or VAT pasteurized. Just be aware that dairy (even pasteurized) contains protease inhibitors which can cause a leaky gut even if you aren’t intolerant. So, maybe keep the portions on the small side while you’re figuring out if that’s a problem for you.

2. Maybe and maybe not. It depends on exactly what protein in potatoes you are intolerant of. However, all nightshades contain glycoalkaloids which can cause a leaky gut and stimulate the immune system. I would be very cautious of them.

Sarah, I have celiac. Just to clarify: chocolate = bad, cocoa = okay?

Also, do many people with auto-immune diseases and leaky gut have b12 deficiency, or is that just celiacs?

chocolate=cocoa=bad

Quote from my book: “Vitamin B12 deficiency has been demonstrated in patients with multiple sclerosis, celiac disease, autoimmune atrophic gastritis, and type 1 diabetes.” Anecdotally, I hear about it a lot in people with IBD too.

Sarah, I’m curious WHY you’re saying chocolate and cocoa powder are bad for a celiac? Wouldn’t it be more on and individual basis? For example I tested as tolerating chocolate on a sensitivity test. Are you saying I should still avoid it ( with auto immune disease), and why? Thank you.

Hi Sarah,
thank you so much for this very informative post!
Last week I started eating my very first batch of homemade kefir as another step in boosting my gut healing, but the last few days I’ve been feeling very ill. I am very sensitive to yeast, so now I just understood that the kefir probably is the cause of this setback. Glad I learned this! No more fermenting for me, I’ll continue to rely on probiotic supplements instead. But this made me wonder about another product, how is it with apple cider vinegar and yeast? Is it different from brand to brand? Avoid or proceed with caution?
I’m really looking forward to your book!

Thank you Sarah, and thank you Astrid for commenting! Can either of you confirm that probiotic supplements are harmless (while fermented foods like kombucha and sauerkraut are not)? I’ve been eating fermented foods like mad lately, but I’ll switch to a probiotic supplement if that’s the better approach. (My history: 15 years of psoriasis, now hoping to cure it. Just starting on the journey!)

If you don’t have a yeast sensitivity, fermented foods have far more diversity than any supplement you can take. A typical fermented food might have between 40 and 600 different strains of probiotic organisms. Most probiotic supplements have between 2 and 8 (Prescript-Assist, which you could add on top of fermented foods since it’s a soil-based probiotic has 29).

Hi Sarah,

Thanks so much for this great article. I have gluten intolerance that manifested itself with left rib pain on my side right under my armpit and heartburn. I am still having problems though and have gotten pain on my right side recently, as well as a bad attack of heartburn/gas pains radiating to my back a couple of weeks ago.

I am concerned about the right side under armpit pain and consequently my gallbladder, though I don’t think fat is the trigger. I have read your post about this and as a 23-year old I would not want to have it taken out, but am considering getting it tested. I have been gradually losing weight not knowing what to eat so I am considering adopting the autoimmune protocol. I I often consume protein powder, would pea protein be okay or is it too processed? As a side note, I also struggle with seborrheic dermatitis on my scalp, minor Keratosis pilaris on the back of my arms and PCOS ( I eat high protein, gluten and dairy free).

Thank you for all this information. I understand if you are not able to respond!

I would suggest trying a standard paleo diet first, get some good fats and lots of veggies. I generally recommend moderate protein, moderate fat, and moderate carbohydrate. I do not recommend pea protein powder. The only protein powder that is AIP-friendly is gelatin or collagen powder. I also suggest looking into digestive support supplements, especially digestive enzymes and ox bile.

Thank you so much for your reply! I have been thinking a lot about the AIP and agree with you that first paleo is a good transition. I will be moving towards a paleo diet; I haven’t been eating beans since my last episode but there is more work to be done! I take soil based probiotics but no digestive enzymes so I will look into that also.

Thanks again! I look forward to reading your book.

Sincerely,
Natalie

What you call paleo diet is better know in France as Dr. Seignalet’s diet that I have now been following for 3 months (I was diagnosed as fibromyalgic but I tend to think I have celiac disease rather). Some improvement but not enough and incredibile reactions on some days. If I want to play totally by the book I should be eating vegetables (but no tomatoes for instance – I have been eating tons of tomatoes), fish and bones broth then? I am motivated, pain is excruciating.

My husband and I had a Cyrex Labs gluten and food sensitivity test and my husband’s gluten test came out worst than mine and he had a totally clean food sensitivity test. It made not sense really. The test can be expensive and the results may not be right.

Sometimes, the immune system can be so beaten down, that your reactions will be ‘slight’ to equivocal but that can really mean that you still have reactions. So one person’s test coming out ‘worse’ than another’s is not an accurate assessment.

You are doing such a fabulous job of educating people through these confusing issues! Keep up the good work, and keep researching and looking for answers and refining your perspective (as you have been). You are a light in a world that often feels dark and lonely once a person realizes they have to eat differently than their family and friends. This often adds to the stress an autoimmune person is dealing with. I will be letting my patients know about your site as I help them on the road to regaining their health and vitality (or experiencing it for the first time ever) and reducing their autoimmune symptoms. As a person and clinician (naturopath and psychotherapist) who has dealt with serious health challenges and autoimmune disease, I personally know what it’s like to be sick and how to regain health. BTW, I use the Cyrex tests in my practice and find them to be very helpful in motivating my patients to be vigilant once they see the destruction that has been happening from what they have been eating.
Thank you for your passion, commitment and inquisitive mind…you are a gift to the world!
Dr. Elena Michaels

I just stumbled across this post and your blog. I just started drinking kombucha on a regular basis and have noticed some digestive upset. At first I just assumed it was a healing crisis, but it’s continued for weeks so now I’m beginning to suspect yeast. Total bummer because I love love love it :(

I’ve also noticed a similar digestive reaction to cod liver oil (Green Pastures) which I thought was odd. And my one year old daughter also had a reaction to COL. Minutes after taking it she got a rash on her face and chest. Unfortunately I was not able to breastfeed for very long so she has been on formula ugh. Otherwise I have her on a mostly primal diet which includes dairy. I was giving her cheese (she won’t eat yogurt) and she seemed to tolerate that well, but milk gave her diarhea. We stopped the milk and started COL for the Vit D but stopped it after noticing her rash.

Have you come across anything related to cross sensitivities to COL?

Actually, I have heard of reactions to CLO and kombucha (might be the yeast but might be a strain unique to kombucha so it’s still worth trying other fermented foods). How is your daughter with fish in general?

She has had salmon, halibut, steel head trout, and a few other types of white fish with no reactions. I have not ever given her cod though. It seems odd to me that she would have that type of reaction to the CLO if she is ok with other fish. But I am ok with all types of fish as well and still noticed a digestive reaction to the CLO

Hi Sarah!

I love listening to your podcast and feel it is very relevant to me as I have Hashimoto’s Disease, so your focus on the Autoimmune Protocol has been wonderful for me. I have a question. I took the Array 4 from Cyrex Labs last year and came back as being clear for all foods on the list except yeast. If it were you, would you trust this – meaning I might be able to enjoy some of the non-grain foods once in a while from that list? Also, since I am cross-reactive to yeast, I wonder if this is why I can’t even SMELL sauerkraut without all kinds of symptoms. This is also the case with other fermented foods. I am frustrated because I want to make my own yogurt with my great source of raw milk but although I am not cross-reactive to dairy, on another test, I show sensitive to yogurt! Do you think this might be why I come back sensitive to yogurt and not all dairy?

Thank you in advance for answering my questions and thank you so much for all the great information. I reference your blog a lot on my website.

Array 4 will only tell you if you have an immune reaction to those foods and can’t measure the other ways those foods can affect your gut barrier or interact with your immune system. This mostly applies to the grains and pseudo grains. I think that raw grass-fed milk, egg yolks, tapioca, sesame would be okay to include. Have you tried your own homemade yogurt with a yeast-free starter? It could be that since you are so sensitive to yeast that a little yeast in the yogurt is the problem (its hard to keep yeast out of fermented foods). What I would do is find a really high quality lactobacillus-based yeast-free probiotic (I like kirkman bio gold) and use that to start your yogurt.

Thank you for your reply! I have been strictly GAPS for about 15 months now and dairy free. I had a TERRIBLE reaction – just like being glutened, to a couple coconut flour muffins on Tuesday (my hubby and I are on the 21 day sugar detox and I was replacing my nut flour muffins with coconut flour. Should I assume coconut flour is a cross-reactive food for me? I knew it wasn’t on the common cross-reactive food list and I have had it in smaller quantities with waffles without a reaction that I know of. But this was a VIOLENT reaction and almost caused a 911 call if I had passed out. :( My scariest reactions are in the brain – I get brain inflammation from some of my allergies – I assume it is gluten and cross-reactivity but I am not sure. I do GREAT on GAPS without these mishaps here and there. It had been 6 months since my last episode when my husband kissed me after eating a cookie on his way home from work but he didn’t tell me because he is supposed to be gluten free too! That was all it took! He confessed two days later when I was taking out most of my remainder food groups from my diet! He didn’t want me to go hungry! LOL

I do want to try yogurt and never thought about a yeast free starter! Is the one I am using yeast free? http://www.culturesforhealth.com/viili-yogurt-starter.html I haven’t used it since before GAPS because we (my GAPS practitioner and I) weren’t sure if I was reacting to it based on the sensitivity test. If it is yeast free, maybe I will give it a shot. I guess I need to understand what a yeast free starter is first. LOL I can’t seem to handle any vegetable ferments at all – I get palpitations and feel sick.

Also, one more question….is it bad to be using a light olive oil that supposedly is “pure” like this one for mayo? http://www.evestable.com/2011/06/bertollis-extra-light-olive-oil.html I so desired a mayo that wasn’t so strongly flavored by EVOO. Any suggestions on a replacement as I am sensitive to walnuts so I can’t do that.

And a confession – since I didn’t test sensitive for cocoa in both cross-reactivity and sensitivity I was thrilled to add butter from grass fed cows (Kerry Gold) melted with cocoa and a dash of honey and vanilla with almonds to make a “chocolate bark” which seemed to help clear my asthma unintentionally. I found out later that the fats in the butter (and possibly something in the cocoa) worked together to help my lungs? But then I read your post and now I’m questioning that indulgence and have taken it out. Do you think eating it in moderation is safe since I am on the GAPS protocol? Or would you keep all cocoa out until I feel I’m done healing?

Thank you so much for even reading half of this response! This is the first time I commented and I am so thankful for your response. It’s so hard to navigate the waters of food sensitivities and sometimes it gets discouraging to go backwards after making so much progress. I have been LOVING your podcasts and thank you so much for including a lot of autoimmune protocol information. I am hoping to start that process by June.

My website shows how much progress I’ve made on the GAPS Diet. I am so thankful for it! Thank you so much for your reply. I am very grateful and I promise not to write this much again. :)

Take care!
Maureen

I would suggest contacting the manufacturer of your yogurt starter to ask. Do you take probiotics? The other possibility is a histamine intolerance, in which case yogurt is not going to work (heart racing is one of the typical symptoms). If you take probiotics, then it’s almost certainly the yeast. If you try it, go SLOW.

The olive oil will have less polyphenols which are responsible for many of the health benefits, but it’s still okay to use. I like to use half evoo and half avocado oil. Macadamia nut oil is another good one.

If butter and cocoa are working for you, go for it. Especially if you are getting grass-fed, those are great fats. The issue with dairy is the frequency of sensitivities to it (and there are extra concerns with pasteurized dairy). The issue with cocoa is sensitivities and also that it is very high phytic acid, which can be a gut irritant. If you aren’t sensitive and are keeping the amounts you eat small, it should be fine.

Thank you Sarah!

How can one go about finding out if they have a histamine intolerance? Would this also make sense if I get a fast heart rate from coconut oil? I have always been sad that I can’t have it since it can be so good for a person but I actually get sick from a small amount of it and no one has been able to decipher the problem. I wonder if it is related? Also, is it treatable?

Thank you so much. You have been so helpful!

Maureen

You can have your blood histamine and DAO tested (the enzyme that breaks down histamine in the gut). Or you can remove high histamine foods and see if you notice improvement (tough because histamine production in food is typically a result of handling and can vary dramatically, but typical culprits are deli meats, anything fermented, and fish).

I have been on the AutoImmune Paleo diet for about 2.5 months until a few days ago. I gave up and reintroduced nuts and honey because I got a concerning phone call from my doctor (btw, my eczema came back almost immediately). They called to tell me that my lab work came back and I had high LDL levels now and some other “girly” issues. I was totally shocked and disheartened because it has really taken all my time and effort to make sure I stay on a strict AI plan. I am only 31 and have never had any of these issues before. I teach dance for a living and have a 4 yr old to keep up with, so I am pretty active. I get my labs done once a year and they always come back mostly normal (but occasionally low vitamin D). My vitamin D levels were starting to fall again despite taking high dosage supplements daily, so they recommended I increase. But, my main concern is the LDL. As far as what I have read, my best theory is that my PH levels in my body have changed. I am not sure how to proceed or if anyone has any advice. I did make appointments with my GI doctor to get weaned off of Prilosec that she put me on 2 yrs ago for “chronic acid reflux and mild gastritis.” I am thinking, though, my problem may actually be too low levels of stomach acid instead of too high, so the Prilosec may be making it worse now. I have read that LDL spikes are common on the AutoImmune diet (based on people like me posting on blogs), but I have yet to see anyone figure out what the problem was and how to fix it. After I am weaned off the meds, I want to get my acid levels in my stomach tested, but I am wondering if there is something I am missing. They did check my thyroid in the blood work and said it was normal, but I am wondering how accurate that is????? Thank you.

High LDL by itself is not necessarily something to worry about (depending on how high it is, what your total cholesterol is and especially what your trigylcerides are since that’s the most important factor here, but it would also be good to know your C-reactive protein). In fact, there is a growing body of evidence in the scientific literature that it is actually healthier for women to have a slightly higher LDL and some researchers are pushing to have the normal range re-defined. Which is why it’s hard for me to comment without knowing what your other numbers are. How were you feeling? Did your doctor do a full thyroid panel? It’s also really tough to pinpoint where your diet could be tweaked without knowing exactly what you are eating and what supplements/medications you are taking. But, I can say that Prilosec is a big red flag since it will be hindering your digestion and I think you are absolutely on the right tract to wean off of it.

Thanks! I finally got my actual report with the specific numbers and took it to my new PCP. My LDL was only 112 and my HDL was pretty high, so it made my total 298. My Tri’s looked good, though, and the dr. said she wasn’t worried b/c I am so young and active (and the 112 wasn’t that high). After a day or two of eating whatever I wanted (when I was upset and had gotten the original report of “high LDL” w/out specifics), I had a massive eczema outbreak. I have been back on strict AutoImmune Paleo since then (about 2.5-3 weeks now) and it is almost cleared up. Thank goodness! I am going to pursue getting an IGg and IGa tests to test for sensitivities to pears and coconuts among other things, but my dr seems to think the scratch tests will be more accurate. I am wondering if they just misunderstand me and think I am trying to get tested for a true allergy. Have you ever heard of the scratch test for sensitivities? I am also wondering HOW and WHEN it would be best to wean myself off of Prilosec b/c my GI specialist just told me to go “cold turkey.” I immediately sought a new GI. We are going to DisneyWorld next month and I really don’t want to be miserable due to not being able to eat some treats or due to eating some treats and not having the meds I may need. Any tips, suggestions?

My understanding is that scratch tests just test allergies and not sensitivities.

I went cold turkey off of Nexium, which I had been on for years. I remember hardly noticing a difference at all and just continuing to see improvement in my digestion. Although, knowing what I know now, my suggestion would be to add some digestive enzymes to make sure that you’re really digesting your food well and dealing with overgrowth as you go off Prilosec. And then do the other acid reflux things like don’t go to bed too soon after eating, don’t drink mint tea, maybe prop up the head of your bed 4-6″ so you’re sleeping at a bit of an incline. I don’t know how to help you eat treats without it affecting you, but I can suggest bringing any meds you think you might need just in case and bringing some treats that you know you can have so you don’t feel left out.

Hi Sarah,

Thanks for this post. I just discovered your blog while doing some research about gluten cross-reactivity, and I really like your writing style and your scientific basis! I was wondering about your thoughts on IgG food allergy testing. I’ve seen multiple sources that question the validity of the results; in fact, Chris Kesser says in one post (http://chriskresser.com/rhr-can-autoimmune-disease-be-prevented-and-reversed) that IgG testing is “not ready for prime time” and that he thinks “most food sensitivities are caused by leaky gut.” Dr. Emily Deans has voiced a similar opinion (for example, in this article: http://www.psychologytoday.com/blog/evolutionary-psychiatry/201106/how-does-diet-affect-symptoms-adhd). These are just two of many sources that cast doubt on IgG testing for food sensitivities. So what does this mean for the gluten cross-reactivity test? The phenomenon of gluten cross-reactivity certainly seems plausible, but I’m having trouble finding much evidence proving that it’s actually an issue, and it seems like the general consensus is that IgG testing is not the way to go about testing for potential problems. I’d love to know your thoughts on this – thanks!

I think the best way to know if a food is a problem for you is to eliminate it from you diet for a month or longer and then reintroduce it and see how you react. The problem comes when there are multiple that you are sensitive to and sometimes eliminating just one won’t allow you to see improvement or even a dramatic reaction when you reintroduce. In that case, I think food sensitivity testing can be a very powerful tool for narrowing in on the problem foods. It does seem to be a test with some reliability issues, but IgG antibody production is also a very dynamic system, which may account for much of the variability in testing. And, yes, I do think that most food sensitivities are caused by a leaky gut, but continuing to eat those foods can undermine your efforts to heal your gut, so it’s not something to just ignore. So, I think it’s a good tool for people with very leaky guts and therefore multiple food sensitivities, but there’s also plenty of other ways the body can be sensitive to foods that these tests aren’t designed to measure. So, I wouldn’t rely solely on the results but instead use it as a starting place.

I ate nutritional yeast (cuz it’s so nutritious, right?) WRONG! I was sick for 3 days (fatigue, muscle cramps/spasms all over, joint pain, and increased HR). I also learned that it has glutamate, which is so bad! I have even a little MSG and I get sick. I did not know about cross-contamination. I eat corn/beans/rice weekly – this is going to be very difficult to change that, especially for daughter who loves her oatmeal and her snacks. We have been gluten free, but grain free is a huge step. Can’t wait for your new book to come out! I wish it was coming out before the school year, but glad I found out about it. :)

Sarah,

What about Maca Root Powder? It is the only thing that has been keeping my hot flashes and night sweats in check, but now I am starting to wonder…

Hi Sara I just got my results back from array 4 and it says I’m out of range for cows milk, casein etc, milk chocolate, oats, eggs was a big one, hemp, amaranth, tapioca, teff, and potato. So with the research that you spoke about would that mean that Teff and tapioca are safe for me to eat even though it came out as out of range?

Also I got my daughter tested for gluten intolerance array 1 since I have Hashimoto’s and her test results were out of range for native & deaminated gliadin 33 IgG 1.69 (range is .2-1.2)and glutenin 21-mer IgA 2.66(range is .1-1.3) Do you know what that means? doc just said she’s gluten intolerant but couldn’t explain what those two out of range meant. Does it really mean she’s gluten intolerant? I’m afraid of putting her through a gf diet for no reason. I trust you and your website! Please help! I can’t wait to get your book… :(

If you tested out of range (which means it was so high they couldn’t measure it), you should not eat that food. Even though it’s not technically a gluten cross-reactor, the reason why it’s included in array 4 is because of the high frequency of people who test positive for it who are also allergic to gluten. Wheat gluten proteins consist of two major fractions: the gliadins and the glutenins. These proteins are broken up into some predictable chunks by our digestive enzyme (the 33 is a code for a specific chunk of gliadin, same with 21-mer for glutenin). Each chunk is tested separately on array 1. So, yes, you daughter is extremely gluten sensitive and putting her on a gf diet is absolutely appropriate. You may want to consider array 4 for her as well unless your whole family will be avoiding those foods from now on.

Thank you so much for your fast response. I’ve been so worried about my daughter’s results because I don’t want her to get all the issues I have with Hashimoto’s (plus my dad died of lupus). I feel like my world is over without eggs, tapioca and potato flour. There goes all my baking. It will be an adjustment. Thank you soooo much for taking the time to explain things to me. You really are a wonderful person on a mission to help so many of us with these issues. Btw. I apologize for forgetting to add the h at the end of your name last night in my email.

Yes, it is possible. While coconut oil has tons of benefits, it can actually increase IgA antibody production to other foods you are sensitive to (now of course, you’ll want to both take a break from coconut oil and try to track down what you’re eating that you have an intolerance to).

Cacao is not a gluten cross reactor.

Good Morning Sarah,

Thank you! Even my naturopath looked at me like I was crazy when I said I was experiencing an auto-immune reaction to coconut oil. I think what may be happening is the protein supplement I’m taking – it’s very high-grade and made of pea and rice protein. I’m going to go off it for now and see if that helps.

Only problem is – now what!? What to eat for breakfast? And when I travel! Yikes. Can’t do hemp, whey or soy, and now can’t do rice or pea. Is there a protein powder you recommend?

Thank goodness I can still have a little cacao!

You could try gelatin or collagen powder (not really a balanced complete protein, but a good source of glycine). You could also try beef plasma protein (but it always has soy or sunflower lecithin added, so that may or may not work for you). I eat meat, veggies and fruit for breakfast.

I’m begging for your help in understanding and coming to grips with my own Cyrex test results. I am not reactive to gluten/wheat at all, but I did show reactivity to soy and yeast (out of range) and soy and tapioca (equivocal). I know I’m in the minority here and everything I read explains the cross reactivity as producing a glutenous immune response in the body or that those foods make your body think you’re consuming gluten. How in the world am I reactive to other things, but not gluten/wheat? Everyone points to gluten/wheat as the primary issue with these cross reactive foods as accomplices, not primary culprits. I was not exclusively gluten free prior to testing. I just can’t make sense of it which means I can’t explain it to anyone else either! Thanks!

I have Hashimoto’s , leaky gut, candida, low adrenals, and major gluten sensitivity. My doctor currently has me on a strict paleo diet minus fruit and eggs. They do have me doing a shake in the morning w/either hemp or rice protein, chia seeds, coconut milk, and almond butter. Reading this article plus the one on nuts it sounds like I shouldn’t be having nuts, seeds, or rice/hemp protein. Your thoughts on this please? Also, what are good breakfast options for me I can eat on the fly? And, what is a good snack for me other than guacamole that have protein and fiber?

Thank you so much for all of your research and knowledge!

I definitely recommend checking out all of my posts on autoimmune disease, starting with the autoimmune protocol: http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

As for shakes: I think beef plasma protein or collagen would be better choices for protein, avocado or coconut milk would be good choices for fat. A common snack food for me would be a cup of broth, some canned fish or oysters, homemade jerky, or leftovers, usually with some veggies or some fruit.

Thank you so much for the wonderful info! I will buy some berg plasma or collagen protein and try that for my shakes. I though I was doing good w/chia seeds and hemp/protein powder and now I am wondering if I was hurting myself. It is so hard w/candida because the only fruits I can have are blueberries or a little bit of green apple.

I recently came across an article in which the author considered buckwheat to be a seed and not a grain. (http://chriskresser.com/heavenly-sourdough-buckwheat-pancakes) Though I’m understanding that buckwheat is potentially contaminated by gluten and also potentially cross-reactive, something inside me is excited about the prospect of reintroducing it one day (like other seeds). I’d appreciate hearing your thoughts on this. As always, thank you for your dedication and your oh so generous site. Looking forward to the book.

I am interested to see if a diet like this could be helpful dealing with my many autoimmune issues however I am a vegan and am not sure if this kind of a diet can be adapted. I am allergic to meat

All meat? What about seafood? What component are you allergic to? Can you have hydrolysed amino acids (like a collagen supplement?). Can you have egg yolks? What about animal fats? Can you consume grass-fed tallow or pasture-raised lard? Does it help to take digestive enzymes (pancreatic enzymes) and ox bile when you eat animal foods?

The two major problems with trying this out with a completely vegan approach are lack of fat-soluble vitamins and some essential B-vitamins and lack of sufficient and complete amino acids to promote healing. Pescetarian definitely works really well if you can handle fish.

I have been doing the AIP diet for a month now, before that I followed regular paleo. I am working on healing my fatigue caused by celiac, leaky gut and adrenal fatigue. I know that I have a lot of issues with yeast. However I was making a point to have either sauerkraut or kombucha on a daily basis. It’s been 5 days since I’ve cut it out and have been feeling much better. Not sure if this is due to the lack of yeast or that I have been on the AIP diet long enough to start seeing results. My question is though, if it is the yeast, which I plan on avoiding these items for at least a month and then re-introduce and see how I feel. Should I also be avoiding other things that are fermented or have yeast? Like coconut amines, balsamic vinegar, ACV, canned olives etc? I’ve cut out so much already that I don’t want to eliminate anything else if it isn’t necessary. thank you for all of your wonderful articles! They are so helpful and such a great resource when trying to navigate alternative healing methods for autoimmune issues.

That’s a really good questions, and I admit that I don’t really know the answer. If it’s a food sensitivity to yeast, cutting out all foods that contain yeast for a while is advisable. But, if you’re noticing a different by just cutting out sauerkraut and kombucha, then I think it’s worth continuing on this path and seeing how far it gets you before cutting out any other foods (often we get so elimination happy that we end up depriving ourselves of important nutrient-dense foods and variety and cause more problems than we solve).

I see multiple people have asked about cocoa and chocolate but I am curious about cacao nibs. I have been eating these by the spoon full thinking that I was giving my body some serious antioxidants to work with but am now questioning whether or not this is wise to do for the time being.

hello I’ve found your research very compelling and I am moved, you see my beautiful 10yr old daughter as been recently diagnosed with hidradenitis suppurativa and she has done at least one surgical operation with no relief and the only solution being offered is more surgeries tears have been shed with the thought that my daughter would suffer for many years to come. I am searching for answers to give my daughter a normal life.

P.S. she has had pimples around her pubic area from she was a toddler and started seeing her period at age 9 then the flaresup began. Her diet consist mainly of cereal milk rice various snacks

I personally know people who have successfully put HS into remission with a paleo diet (or in some cases the autoimmune protocol). Check out primalgirl.com for a personal success story.

Sarah – thank you so much for your wonderful information. After being diagnosed with Hashimoto’s and going aip for over a month, I started working with a nutritionist, who did both a Metabolic test and a MRT test. Should I also do the Cyrex Array 4? I was really interested to see the results of the MRT – it showed a sensitivity to beef, cocount, olive, (all of which I was eating aip) some nightshades, mushrooms (which I have not liked my whole life) as well as some other foods and chemicals. So, I am also eliminating those from my diet. The MRT showed that I did not have a reaction to whey, yogurt, and some grains, but I am hesitant to add those back in. I started this process at 112 lbs (5’2″) and am down to 105 and certainly don’t want to loose more weight. I guess at this point, I am a little confused on exactly what to eat!

All of the foods eliminated on the AIP are eliminated for reasons that go far beyond food sensitivities. Food sensitivity screens can be useful for identifying additional problem foods but an elimination diet is really the most sensitive way to determine if a particular food in a problem. The MRT/LEAP test has not been validated in the scientific literature and is not used in research or clinically, so I can’t comment on the results of that test.

I was wondering how careful I should be being as far as avoiding trace amounts of gluten? I have Hashimoto’s and have been diagnosed as being gluten sensitive. I just started the paleo diet. I sometimes get salads at subway when I’m at school and I worry about the bread particles contaminating things…expecially when they cut up the stuff for the salad on the same line they make the sandwhiches on.

Any advice? I don’t want to appear like a crazy person when I go out to eat, but I do want to be careful so I don’t mess up the diet and thus all my hard work. Thanks!

You will probably find that your sensitivity increases the longer you’re paleo (it’s not that you’re more senstive really, but that you notice the reactions much more and there are a variety of reasons for this). As a fellow crazy person, people seem to know more about gluten sensitivity these days and it’s not bad being the weirdo (I’m always apologetic, which seems to help)–what’s much harder for me is nightshades, since people don’t seem to know what those are!

Hi Sarah,
Thanks for this article. I was at the International Celiac Disease Conf in Chicago this fall and met the Cyrex people there. Intriguing test since so many of us adult celiac patients are still symptomatic. 2 questions for you:
1. I am recovering from SIBO and don’t eat most of those foods on the list – I do eat rice, and I keep trying to eat chocolate and eggs and fail:( So – don’t you need to be eating these foods to get an accurate antibody test – it takes a few weeks to get enough antibodies I would think to get an accurate test. Do I risk further damage by eating small amounts a few weeks before the test?
2. I am married to an academic doctor who is very skeptical of all the testing that is now offered that people pay out of pocket for. Univ of Chicago Celiac Dis. Ctr. has emphatically denied the validity of this test – how can I justify the $500 to him? It makes it even more difficult that the only paper published is authored by someone from Cyrex.

Thanks -Ann

If it really is a case of antibody cross-reaction, as long as one food that you are creating these antibodies against (that cross-react with gluten) is in your diet, you will be able to measure it (the idea here is the same antibody is reacting to several foods). It would be nice if there was more science, but at least the paper is published in a peer-reviewed journal. All of these types of tests have limitations and they are certainly overused, but there’s also a great deal of validity, when the right tests are done for the right reasons. As far as getting the Cyrex test done, an elimination diet is just as sensitive. It’s nice to test when there’s so many foods that might be culprits because eliminating all of them can be a protracted process to isolate the problem foods. But, if it’s just 2-3 foods, then eliminating is easier.

Thanks Sarah, that helps. I have an appt today with a U of C specialist in adults with celiac who are symptomatic. I am curious to see what she has to say about all this. Its been 2 years trying to figure out what foods are my triggers because there are so many – I suspect as my gut heals I will be able to tolerate more but it would be nice to know what foods I will just give up on!

I am a scientist as well and had to change my mindset to consider IgG tests, but I did and they helped. I’ve had four members of my family tested. I had an IgG test done first, eliminated foods and reintroduced one by one and found the test actually help pinpoint some things. I knew from my own issues that I reacted to some of the foods on Cyrex Panel 4 even before i knew about Cyrex – hemp, sesame, coffee, potato, chocolate, etc. so I felt much better discovering this test exists although I am not American and cannot access it yet. As for ferments, it may be an issue of amount. I have heard of some people having to start with miniscule amounts (1/8 tsp of sauerkraut or less a day) and then work their way up slowly from there as they heal.

Sarah,
How does Cyrex testing compare to ALCAT testing? Is it possible that foods that come up as non-reactive may still be problematic?
Thank you,
Staci

It’s a similar test, but I’m not sure if there’s a difference in terms of false positives or false negatives. Yes, it is possible for non-reactive foods to still be problematic with either test.

I have been gluten free for about 4 months and the first 3 months or so I felt great but the last month or so I am bloated and half sick again. I am wondering if cross sensitivity takes a while to appear?

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