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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.

My Blood Panel Results Are In...
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5 posts in this topic

Well, I finally saw my doctor today to get the results of my blood panel. I'm sure lots of other people have similar confusing results, so I wanted to share my experience and insight:

I had an IGA Anti-Gliadin antibody reading of 53 (over 25 is high), but my TTG was only 3, which is a low/negative number.

My biopsy was also negative, BUT....he only took one tissue sample, so I don't have a lot of faith in the scientific value of this result, given that damage to the villi can be patchy, and all the literature I've read says that you must take multiple tissue samples to avoid sampling error.

The doctor said this means I don't have celiac disease. He said although the Anti-Gliadin AB is high, this doesn't necessarily mean I have celiac. (I didn't think to ask him at the time...but I'm kind of curious, why do they bother doing this test if the results don't mean anything?)

I asked if this means I have a gluten intolerance, that hasn't gotten so bad that it's damaged the villi yet. His reponse was that you either have it, or you don't....there's no degrees of gluten intolerance.

But then he said my symptoms before going gluten free were classic celiac...and the improvements I've seen since being gluten free for the past month, are exactly what he would expect to see from somebody who was recovering/recently started the gluten-free diet. He said there are "subclinical" cases of celiac, and that I may be one of those cases. His recommendation was to stay gluten free for a few more weeks, and then slowly try reintroducing gluten into my diet. If I have reactions to it again, I can probably take this as "evidence" that I need to avoid gluten.

I guess the point (which most of you already know all too well) is that in the end, you need to just listen to your body. Blood tests and biopsies aren't perfect, and if your body is telling you that it doesn't play well with gluten...you should always listen to what your body tells you, regardless of what the tests/doctors say.

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When my doctor diagnosed me, it was only with the blood tests. My levels came back indicating celiac, I never had a biopsy. I responded really well to the gluten-free diet and I just went with that, as you said...your body knows best!!

Good luck!

Laurie

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My experience with celiac disease and going to the Doctor is that I have come to learn what an un-exact science medicine is. I always thought with all the technology etc. that medicine was more specific in its diagnosis and treatments....Wrong. This seems especially true when dealing with celiac disease!

Your best bet is to listen to what your body is telling you because nobody knows you like you do.

Best of Luck!

Cleveland Bob B)

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I think your physician is about 1/2 right on this one.

An AGA IgA definitely is not enough for a diagnosis. The Anti-Gliadin tests are not very accurate at all. The tTG is the best serological test out there right now, followed by the EMA. A negative biopsy and a negative tTG would be grounds for saying no celiac. However, one sample is not going to work...the biopsy is worthless with only one sample.

What I would suggest is this: get a gene test. This will tell you if you can or cannot have celiac. If you have neither the HLA-DQ2 or HLA-DQ8, you cannot have celiac, and you can rule out celiac altogether. If you have either of the genes, then you should probably have an EMA and another endoscopy, making sure that they take multiple samples.

The part that I think is 1/2 wrong is that you can't have celiac. There is inadequate testing to rule it out altogether, because the tTG, though important, isn't the only way to diagnose or...not diagnose.

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I agree that listening to your body is very important...

I also believe that gluten is toxic for way more people than just those predisposed to celiac through genetics.

Listen to your body, if it's telling you gluten is bad for you then by all means stay away from gluten!

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    • does your diet have to be like a perfection?
      I  think you need to watch where you get your medical info!    Of course you can't introduce gluten back in. And  of course you have to be strictly gluten-free and not intentionally eat gluten.   "The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve. The gluten-free diet requires a completely new approach to eating. You have to be extremely careful about what you buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out and traveling can be challenging as you learn to scrutinize menus for foods with gluten, question the waiter or chef about possible hidden sources of gluten, and search for safe options at airports or on the road. However, with practice, identifying potential sources of gluten becomes second nature and you’ll learn to recognize which foods are safe and which are off limits." http://www.cureceliacdisease.org/living-with-celiac/guide/treatment    
    • does your diet have to be like a perfection?
      FlowerQueen is correct.  Once diagnosed with celiac disease, you should never consume gluten again without the risk of becoming very ill (osteoporosis, liver damage, lymphoma, etc.).   I think everyone has trouble in the beginning sticking to a gluten free diet.  That's because gluten is in so many processed foods.  It takes time to learn to read labels, make a safe kitchen, learn to eat out, get your family to support you.  I would advise reading out Newbie 101 section under "Coping" within this forum.  It contains valuable tips for becoming gluten free.  Also, check out the University of Chicago's celiac website to learn about celiac disease.  Knowledge is power!   Everyone has different degrees of damage, but I would say that learning the diet and healing can take months to a year or longer.  The good news is that this is an autoimmune disorder that is treatable -- avoid gluten at all costs!   Take care and welcome to the forum!   
    • does your diet have to be like a perfection?
      Not sure what you mean by perfecting your diet? Do you mean accidentally eating gluten?   As to re-introducing gluten again, if you have celiac disease, please DO NOT ever re-introduce gluten again. It's an auto-immune disease, not a food intolerance. It will damage your gut again if you do.  Hope this helps.
    • 3 months gluten-free still feeling cramps
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