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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Cross Reactive Foods
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10 posts in this topic

Hi there,

I was diagnosed with Celiac disease mid-March of this year. I have been on a strict gluten-free diet for over six months now. My major symptom, leading up to the diagnosis, was EXTREME edema/fluid retention and fatigue.

For a few weeks after my diagnosis, I began to feel a bit better. But not for long, I actually started to feel worse.

I experimented with some elimination diets this summer, at times they led me to "temporary relief", but nothing long-standing. Symptoms returned worse.

About a month ago, I began to develop sinus problems, scratchy throat, in addition.

I recently came across studies about "cross-reactive foods" like rice, (basically all grains) potatos, tapioca, coffee, etc. There is a list of about 18. The studies says that your body interprets these proteins similarly as it does gluten and therefore launches an inflammatory response. I have been able to link SOME of my symptomatic experiences to these foods, and about 4 days ago decided to begin trying to eliminate these items.

I am writing to ask if anyone has an insight/experience into this topic?? Any comments would be greatly appreciated. I am trying so hard to defeat this - and I won't stop until I find relief!!

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I had to go Paleo to get relief, so maybe the article is right and I was reacting to other foods, particularly the grains. I don't know. All I know is I feel better without any grain and kind of ok if I eat a little rice. It certainly is a battle trying to figure out what you can eat the first year. Is it cross contamination? Cross-reactive foods? Things eventually settled down, but I do know the first year was a roller coaster and the most important thing I learned was not to eat things made in a facility where wheat is also processed. I didn't think I'd be that sensitive but I was/am.

Can you post the articles? I'd be interested in them.

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Interesting...do you think other things besides the grains were bothering you?? Nuts, beans, fruit?? How long until you felt relief? What were your symptoms if you don't mind me asking.....

This article explains the whole cross-reactivity concept, interesting I know..

http://blog.primohealthcoach.com/blog/bid/79586/18-Gluten-Cross-Reactive-Foods

I had to go Paleo to get relief, so maybe the article is right and I was reacting to other foods, particularly the grains. I don't know. All I know is I feel better without any grain and kind of ok if I eat a little rice. It certainly is a battle trying to figure out what you can eat the first year. Is it cross contamination? Cross-reactive foods? Things eventually settled down, but I do know the first year was a roller coaster and the most important thing I learned was not to eat things made in a facility where wheat is also processed. I didn't think I'd be that sensitive but I was/am.

Can you post the articles? I'd be interested in them.

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We have had these discussions before. As I'm remembering, we haven't had anyone able to find a reputable, scientific source for the "cross-reactivity theory". Mostly its been "articles" and "studies" by people with something to sell.

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Just curious, but have you tried eliminating dairy yet? Dairy is my worst enemy right now. The lactose can cause GI issues, but the casein in milk products can cause a reaction similar to gluten.

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If you are still having problems, try making a food journal.

The 'usual suspects" are the top 8 food allergens. We do know that the protein chain for oats is very similar to the protein chain of wheat. most "allergic" reactions are to the protein(s). Even if the oats are certified gluten free they can still be a problem for some Celiacs.

Figuring out what type of reaction you are having is a big piece of the puzzle. An Eosinophil reaction lasts for 12 days once an eosinophil has been activated.

So you may have to do an elimination diet to figure out what foods you react to.

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I've had a lot of similar problems. I'm 9 months gluten free now, and cannot eat most grains (or at least in any reasonable quantity). I too have ended up on a pretty much paleo diet, and that has helped a bunch! Since getting things under control that way, I've been able to see some of the non-paleo items that I can still eat - for example sorghum and can sugar.

For me, I felt immediately 90% fine after going gluten free, but within 3 months or so I was having nasty gluten like reactions to soy and dairy. If the cross reactivity thing is true, I suppose it could make sense that the antibodies with the ability to target other proteins could latch on to these other foods and produce antibodies that might have more of an affinity to them (just biologically educated speculation). Either way, I've had to eliminate all the foods I was eating in large quantities at the time of my diagnoses, eggs, soy, dairy, nightshades, legumes (which I have just been adding back with no problems!), peanuts, and a couple of vegetables I may have been eating too much of on a compromised system.

It takes a lot of time to figure it out, but as soon as you can get 5 safe foods (pure ingredients), you have a base you can jump back to whenever you're sick to try out others. Hang in there and good luck! I promise it gets better, and I was a pretty bad case to start. It's possible you're becoming more sensitive to gluten too (not too uncommon it seems from this forum), and food that were ok with 10ppm gluten before may now have too much gluten for you (I had this happen to me).

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This article explains the whole cross-reactivity concept, interesting I know..

http://blog.primohealthcoach.com/blog/bid/79586/18-Gluten-Cross-Reactive-Foods

This is a blog. It is not a medical journal article. It links to a "consultation" with a "health advisor". Cyrex labs is run by a chiropractor who will charge you an outrageous fee to tell you that you supposedly "cross react" with other food proteins like gluten.

Absolutely no scientific or medical evidence has been published to support this theory at all.

From another thread where we discussed this ad nauseum:

"There is peer-reviewed literature on dairy cross-reactions, a poorly executed study on corn cross-reactions (their corn turned out to be CC'd with 80 ppm gluten), and some very old articles showing that people with celiac tend to have more food antibodies to dairy and soy."

No evidence of "18 different cross-reactive foods with gluten".

Can you have other food intolerances? sure! Many of us do--but this "theory" is just that--a theory.

If you want to uncover your problem foods, do an elimination diet, taking out the top 8 allergens, remove the gut irritants like coffee, orange juice, acidic foods and alcohol --and going paleo as some suggest. That may be your best bet. Just a suggestion.

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Personally, I think the cross-reactivity theory is on to something, in that proteins like casein and soy are similar to gluten, so Celiacs are more likely to have trouble with them. I don't think they cause the same damage as gluten, though, but the jury's still out on that one.

All these theories aside, if it bothers you, cut it out. Trying an elimination diet is probably the only relibale way for you to figure out what bothers you.

Also, this "18 foods" list is inflated with stuff that contains gluten anyway! (rye, barley, etc), and "American Cheese"? That counts as milk. It doesn't need a separate category.

And even after 6 months gluten-free, your body takes a while to adjust to the new conditions of your gut. It's like, hey! I'm healed! Now what? I'd cut out dairy/casein and possibly soy and see if that helps before jumping in to a complicated elimination diet.

Good luck!

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IMO

The cross-reactive theory is dangerous because it has some truth in it's basis. Yes, those with Celiac Disease often have difficulty with other foods either initially or that develop over time. Are there proteins within certain foods that tend to cause problems - YES. Are these 18 foods the only foods that have proteins that can be problematic - NO.

Putting another label on a group of foods simply adds confusion. There are groups of foods that someone with a damaged small intestine can be intolerant of: Dairy, Grains, Legumes and Nightshades (tomato, potato, peppers and eggplant), Eggs, Nuts, Seeds, Citrus and more. Picking a few foods from these groups and labeling them as the foods to avoid seems to confuse an already difficult puzzle to solve.

If you are new to gluten-free - the best advice is that which gets repeated frequently on this board. Eat whole foods, remove dairy, avoid eating out, etc. IF there is no improvement after months of following these rules it is time to look for other intolerance OR if you can identify a food that is causing symptoms - remove it for at least six months to a year - trial them - if the problem remains - remove and retrial in another six months or year intervals.

IF you can't identify any specific foods that are causing symptoms - a strict elimination diet is your best bet - Meat, vegetables and fruit. No dairy, grains, legumes, nightshades, eggs, nuts and seeds. Don't trial any of the eliminated foods for a month - then try one food at a time - not groups of foods - example: legumes - try soy than three or more days later try beans than three or more days later try peanuts. Keep a food log - make sure to note variations in energy levels and bathroom visits as well as obvious reactions - I think you'll be amazed at the information you discover.

Again, it is only my opinion but removing the 18 foods listed in the blog you referenced like a waste of time as far as elimination diets go. It also seems like it would be more difficult than removing ALL potential problems, just as removing all gluten was much tougher to adapt to than it was for me to eat strictly meat, vegies and fruit. With no labels to read the only difficulty is missing the foods you can't have. Just make sure you stock the fridge with lots of colorful vegies, a large variety of fruit and lots of nice cuts of meat -- once you cut all processed foods from the budget, meat doesn't seem as expensive because the overall food bill is lower.

Good luck - I know very well how frustrating it is to know that something is preventing your gut from healing and not being able to figure it out.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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