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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.

Confused.... A Little Frustrated
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6 posts in this topic

I could use some input from people who have some experience. I recently got tests back that were a little bit more frustrating than I thought. I tested mildly positive a week ago on the celiac panel for Gliadin Igg Transglutaminase with a result of 22 (Ref. is <20) and negative for both EMA and Ttg Iga. Other notable findings:

Triglycerides: 150 (high) (ref. <150)

HCT: 38.7 (low) (ref. 39.2-52.5)

My doctor emailed me back and said that she was suspicious and was willing to go forward with a GI consult and endoscopy. She ordered more tests, and I requested a total serum Iga since it was not part of the panel with these results:

Iron: 99 (Ref. 45-150)

IgA Serum: 88 (Ref. 70-300) seems on the lower end to me... but is "normal"

Folic Acid: 16.33 (Ref. > 5.38)

Vit B12: 427 (Ref. 211-911)

Clearly from these labs I am not malnourished and am sitting here scratching my head. I thought I was IgA deficient since when I was a kid I had chronic sinus infections that led to the removal of my tonsils and adenoids. However, my IgA levels are "normal" even though they are on the lower side. Other than the symptoms that I have, I am a healthy mid-twenties male.

Another very interesting thing to note is that my sister and my first cousin both have celiac disease as well as my uncle who is blood related. There are a lot of thyroid issues in my family as well. My symptoms are foggy headedness, intense anxiety at times, slight anemia. I have a feeling that I may not have celiac based off of these test results. My doctor said she was willing to move forward with a GI and endoscopy but I was hoping for something more substantial to hold on to before that.

The problem lies in the fact that I have a MAJOR exam coming up at the end of the month for which I constantly get anxiety. I want to go gluten free before this to see if it helps with my concentration (I can read a page and sometimes forget what I read, which is eternally frustrating.) My plan is to go gluten free from now until the test and then go back on gluten for a few months for an endoscopy (I know this is crazy but my future pretty much rests on this and I cannot mess it up).

Any advice would be greatly appreciated. Thanks in advance and God Bless.

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That's frustrating when the tests aren't absolutely clear. Something is going on with your slight positive result, and chances are it is celiac, but I understand your frustration with wanting to know "for sure".

If you do go gluten free before your test, be aware that some of us go through a withdrawl of sorts. Mine included a migraine that lasted for days, a lot of grumpiness, and feeling extra tired for about two weeks... I'm not sure if that would work in your favour when it comes to studying.

Many don't go through any withdrawl but there is a chance it could hit; if you do go gluten-free, I would do it as soon as possible so the withdrawl is done before February..

Have you been gluten-free in the past so you know going gluten-free will alleviate your fogginess? For some it happens quickly and for others it takes quite some time for it to improve. At 6 months in, I haven't noticed a huge difference but fogginess wasn't a huge symptom for me either. I've heard others have improved within days.

Either way, I wish you the best. And good luck on your exam!

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My endocrinologist says the blood tests (for celiac) are not reliable. He's a really good doctor.

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I'm firmly planted in the "positive is positive" camp -- because I was "weakly" and "mildly" positive with total villi atrophy - my kids and grands all test negative except for one DGP - we all have Celiac Disease and our lives have been greatly improved removing gluten.

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My endocrinologist says the blood tests (for celiac) are not reliable. He's a really good doctor.

Not reliable in what way? I believe in the unreliable due to false negatives, not false positives (especially when celiac runs in the family and/or the positive result is on a celiac specific parameter)

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My endocrinologist says the blood tests (for celiac) are not reliable. He's a really good doctor.

Hmm. I respectfully disagree. There is a chance (about 25%) of getting a false negative, but false positives are very rare, especially is you test positive on two or more of the blood tests.

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    • Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease. PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.
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    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
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