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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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Hi! I have a rant/question. Do you guys avoid ALL food you're allergic to no matter how strong the allergy? I really need to do the IGG food test, where they check some hundred or so foods, but as of now, in addition to Celiac I'm definitely allergic to the list below. (Confirmed with blood work and prick test.)

 

Chicken

Wheat

Oats

Strawberries

Apples

Tomatoes

Shellfish

Peanuts

Treenuts

Sesame Seeds

 

And I also seem to be intolerant to dairy and lately I'm having big problems when I eat quinoa and rice- I don't seem to digest it, and get really bad stomach aches after eating it. 

 

On top of all that, I've gone vegan- I don't really like the taste of meat and since I'm not having dairy I figured why not try it out. I'm definitely feeling WAY better dairy-free and vegan, but I still have some lingering stomach issues and hives and such that I can't quite pinpoint. I'm definitely not strict about some of those allergies, particularly tomato, but maybe I should be? Most of them are in the 'strong' category. With tomato I've read you can eat it cooked?

 

Anyone else in a similar boat? I'm wondering if maybe I should go grain-free too, but my diet is already so restricted that I'm not sure that makes sense...

 

Thank you!!! :)

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cyclinglady    723

Nice to have a starting point, but you'll probably need to avoid the complete food group for a while.  For example, tomatoes are part of the nightshade family and include egg plant and white potatoes (not sweet).  Do the research.  If you tested low, you might be able to eat those foods on a rotational diet.  You may eventually regain all or part of those foods.  For example, I can eat eggs in baked goods, but not a boiled egg but that's after not consuming that food for more than year.  My garlic and milk allergies have never been resolved.

 

Your doctor should be able to help you with an appropriate diet.  I do think going grain free would be pretty difficult without eating meat/fish. 

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Nice to have a starting point, but you'll probably need to avoid the complete food group for a while.  For example, tomatoes are part of the nightshade family and include egg plant and white potatoes (not sweet).  Do the research.  If you tested low, you might be able to eat those foods on a rotational diet.  You may eventually regain all or part of those foods.  For example, I can eat eggs in baked goods, but not a boiled egg but that's after not consuming that food for more than year.  My garlic and milk allergies have never been resolved.

 

Your doctor should be able to help you with an appropriate diet.  I do think going grain free would be pretty difficult without eating meat/fish. 

 

Thank you so much for your response. I've read about the link with eggplant and peppers and potatoes, but I think I'm sort of in denial and need to snap out of it. My doctor wants me to do a challenge on EVERY single food to "prove" that I really have the allergy, which I think is sort of crazy/super expensive. I'm trying to find another one soon. :)

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cyclinglady    723

While it may not totally perfect, the foods you've identified so far are a good starting point.  Keep a food journal and you may uncover other ones.     I don't think you have to test every single food.  Eliminate those you've listed and see how you feel. 

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StephanieL    74

It isn't suggested to blanket test. Both blood and skin prick tests have a 50% false positive rates.  Having low or high numbers doesn't indicate how mild or server a reaction wold be.  IgG testing isn't recommended even by the big alternative schools don't endorse it. IgG is suppose to be there.

 

That's a really long list. Were you seeing reactions to all of those?

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GottaSki    459

Hi! I have a rant/question. Do you guys avoid ALL food you're allergic to no matter how strong the allergy? I really need to do the IGG food test, where they check some hundred or so foods, but as of now, in addition to Celiac I'm definitely allergic to the list below. (Confirmed with blood work and prick test.)

 

Chicken

Wheat

Oats

Strawberries

Apples

Tomatoes

Shellfish

Peanuts

Treenuts

Sesame Seeds

 

And I also seem to be intolerant to dairy and lately I'm having big problems when I eat quinoa and rice- I don't seem to digest it, and get really bad stomach aches after eating it. 

 

On top of all that, I've gone vegan- I don't really like the taste of meat and since I'm not having dairy I figured why not try it out. I'm definitely feeling WAY better dairy-free and vegan, but I still have some lingering stomach issues and hives and such that I can't quite pinpoint. I'm definitely not strict about some of those allergies, particularly tomato, but maybe I should be? Most of them are in the 'strong' category. With tomato I've read you can eat it cooked?

 

Anyone else in a similar boat? I'm wondering if maybe I should go grain-free too, but my diet is already so restricted that I'm not sure that makes sense...

 

Thank you!!! :)

 

Welcome!

 

How long have you been gluten-free?  Have you been diagnosed with Celiac Disease or Non Celiac Glulten Intolerance?  

 

Just trying to gain a better picture of how Celiac and/or NCGI may be playing into your increased allergens.

 

This is my opinion -- based on my experience. 

 

If you are reacting -- allergy or intolerance to many items and you are NOT in the initial days gluten-free:

 

Remove all grains, dairy, legumes, nuts, seeds, eggs and nightshades for at least a week -- one month is better.  Then introduce one food item (not group) with a MINIMUM of three days between each trial. 

 

This is extreme - yet it can reduce the trying one at a time challenge frustration greatly.  For my case - had I done this I would have saved the first two years of frustration from not improving by completely removing gluten as recommended when diagnosed Celiac then trying to remove one group or item at a time with food log.  I got no where because my system could not tolerate most of the removed foods....I could have never figured it out one item at a time.

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Juliebove    93

I avoid all now.  I learned my lesson!  Of course everyone is different.  When daughter outgrew some of hers and all of a sudden could eat eggs and dairy without getting sick, I thought I could do the same.  Even though the Dr. warned me never to eat them again.  And I never will eat egg again because my reaction is so violent and severe.  But the dairy?  I tried.  I wanted it.  And I went into denial when it sickened me.  Then the next test showed a reaction.

 

I have a huge long list of things that I can't have.  Including a lot of herbs.  I have at times come in contact with some of these things accidentally and did not get a reaction.  One is mint.  My dentist used to use some sort of ultrasonic thing that blasted water onto the teeth.  Apparently he quit using it and went back to the old gritty paste polish.  I did not know this ahead of tme and before I knew it, I was getting mint slapped onto my teeth.  I made sure to rinse really well afterwards and did not get a reaction.  But I did mention this the next time and also that I can't have clove because it is in a lot of dental products.  They were able to come up with something that was fine for me.

 

I suspect that I also probably get a little dairy in some restaurant foods.  For instance, if I get something with grilled onions, they may well be using butter or margarine and most margarine has dairy in it.  If this is the case then at least for dairy a little of it now and then like that doesn't seem to cause a reaction.  Or maybe it does.  My reactions are usually much delayed and I do get sick to my stomach seemingly randomly.

 

At any rate, I do my best to try to avoid what I should not have.  I would never order eggs, chicken, buckwheat, rye, dairy, etc.  But it is possible that I might order something that contains thyme or tarragon or as I mentioned prior, margarine.  But for the most part we are trying to eat in restaurants less and less.  Just far easier for us and less expensive to eat at home.  But...  My mom loves to dine out and she expects us to take her.  So we do go to a few specific places where they know us and know our food issues.  And once in a while we have to try a new place.  And that's where I may possibly get something I wasn't aware of.

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T.H.    404

Hi! I have a rant/question. Do you guys avoid ALL food you're allergic to no matter how strong the allergy? I really need to do the IGG food test, where they check some hundred or so foods, but as of now, in addition to Celiac I'm definitely allergic to the list below. (Confirmed with blood work and prick test.)

 

Chicken

Wheat

Oats

Strawberries

Apples

Tomatoes

Shellfish

Peanuts

Treenuts

Sesame Seeds

 

And I also seem to be intolerant to dairy and lately I'm having big problems when I eat quinoa and rice- I don't seem to digest it, and get really bad stomach aches after eating it. 

 

On top of all that, I've gone vegan- I don't really like the taste of meat and since I'm not having dairy I figured why not try it out. I'm definitely feeling WAY better dairy-free and vegan, but I still have some lingering stomach issues and hives and such that I can't quite pinpoint. I'm definitely not strict about some of those allergies, particularly tomato, but maybe I should be? Most of them are in the 'strong' category. With tomato I've read you can eat it cooked?

 

Anyone else in a similar boat? I'm wondering if maybe I should go grain-free too, but my diet is already so restricted that I'm not sure that makes sense...

 

Thank you!!! :)

 

 

 

The strictness level will definitely affect you. Every time you react allergically, you're going to be having a slight elevation in your IgE levels, right? For a few days, at least, sometimes longer. And then when it hits a certain threshold, you react.

 

Let's say your IgE is water in a cup, and when the cup overflows, that's you getting hives and/or other reactions. If you're constantly getting little hits from some of your allergens because you're not being too strict about avoidance, it's like your cup is constantly partially full, so it takes much less to make you react and push you over that edge. If your cup gets full enough, you can get the tiniest contamination from an allergen and that's enough to push the water over the edge, over and over.

 

I noticed that with my allergens, if I'm not as strict on one or two of them, pretty soon I will start reacting to everything all over the place.  I have to get my diet super super clean, be super careful about contamination, and then everything calms back down. A few of your allergens, like the nuts, peanuts, wheat, and oats, are processed with a LOT of other foods and can contaminate them. Dried fruit, for example, is very often processed in facilities with wheat or nuts (I have no idea why, but seriously, it's nearly impossible to avoid!). 

 

If you are getting skin reactions, you may want to start googling the ingredients in your cleaning supplies, hygiene supplies, makeup, that sort of thing, too, and make sure they aren't derived from one of your allergens. That's a problem I've run into before.

 

Oh, re: eating an allergen cooked, like tomato. Heat will denature certain proteins and once that happens, we should not react allergically to them. Different proteins require different levels of heat to denature them, and sometimes it's so high that it's pointless. Like, wheat needs around 500-600 degrees, which is not that useful for us in cooking, right? But things like citrus and tomatoes seem to be denatured by heat.

 

That said, I have met people who still reacted to cooked foods that should have been safe for them because they were cooked. I don't know if perhaps the foods didn't cook long enough at a high enough temperature or what, but it might be safer to avoid it at first, until you are feeling better, and then try the cooked foods to see if you react or not.  It's much harder to tell if you are having a slight reaction to something if you already ARE having a reaction to something else, yeah?

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I have 100 items to avoid based on the ALCAT test and it varies every time I take it (which is why my dr. diagnosed me with Leaky Gut and then lead to my Celiac Dx).  I try to avoid everything 100% so that my gut can heal.  However, trying to avoid that many fruits, veggies, meats, herbs, etc is a nightmare (I carry my list on my iPhone). 

 

The rotation diet is supposed to work with food sensitivities but with all my other gut issues, I haven't tried it yet. 

 

From what I was told, it's best to not aggravate your intestine while it's healing.  I eat 100% (that I have control over) clean and still have tummy symptoms so I know I'm not healed yet.  I feel your pain, for sure!

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cyclinglady    723

The strictness level will definitely affect you. Every time you react allergically, you're going to be having a slight elevation in your IgE levels, right? For a few days, at least, sometimes longer. And then when it hits a certain threshold, you react.

 

Let's say your IgE is water in a cup, and when the cup overflows, that's you getting hives and/or other reactions. If you're constantly getting little hits from some of your allergens because you're not being too strict about avoidance, it's like your cup is constantly partially full, so it takes much less to make you react and push you over that edge. If your cup gets full enough, you can get the tiniest contamination from an allergen and that's enough to push the water over the edge, over and over.

 

I noticed that with my allergens, if I'm not as strict on one or two of them, pretty soon I will start reacting to everything all over the place.  I have to get my diet super super clean, be super careful about contamination, and then everything calms back down. A few of your allergens, like the nuts, peanuts, wheat, and oats, are processed with a LOT of other foods and can contaminate them. Dried fruit, for example, is very often processed in facilities with wheat or nuts (I have no idea why, but seriously, it's nearly impossible to avoid!). 

 

If you are getting skin reactions, you may want to start googling the ingredients in your cleaning supplies, hygiene supplies, makeup, that sort of thing, too, and make sure they aren't derived from one of your allergens. That's a problem I've run into before.

 

Oh, re: eating an allergen cooked, like tomato. Heat will denature certain proteins and once that happens, we should not react allergically to them. Different proteins require different levels of heat to denature them, and sometimes it's so high that it's pointless. Like, wheat needs around 500-600 degrees, which is not that useful for us in cooking, right? But things like citrus and tomatoes seem to be denatured by heat.

 

That said, I have met people who still reacted to cooked foods that should have been safe for them because they were cooked. I don't know if perhaps the foods didn't cook long enough at a high enough temperature or what, but it might be safer to avoid it at first, until you are feeling better, and then try the cooked foods to see if you react or not.  It's much harder to tell if you are having a slight reaction to something if you already ARE having a reaction to something else, yeah?

Great analogy of using water in a cup!  Allergens can be inhaled too causing your "cup" to overflow.  When springtime arrives, my cup usually runs over....(curse that pollen!)

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    • What does this result mean exactly?   Endomysial Abs, IgA Negative   Negative Transglutaminase IgA <2 U/mL 0 - 3 U/mL Negative 0 - 3
      Weak Positive 4 - 10
      Positive >10
      Tissue Transglutaminase (tTG) has been identified
      as the endomysial antigen. Studies have demonstr-
      ated that endomysial IgA antibodies have over 99%
      specificity for gluten sensitive enteropathy. Immunoglobulin A (IgA) 518 mg/dL 87 - 352 mg/dL
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