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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 Celiac.com's FREE weekly eNewsletter   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

Confused About Test Results
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I've been experiencing some Celiac-like symptoms for a while now and could use some help making sense of these test results.

 

Some history:

 

I had a partial thyroidectomy 13 years ago (benign Follicular Adenoma).  I take Synthroid 112 mcg daily.  About 3 years ago, I starting experiencing hair loss, which my doctor attributed this to my throid and increased my synthroid.  Then, I starting having numbness in my feet.  My endo was concerned and ran what seemed like a million tests to discover that I was Vitamin B12 deficient.  She told me to take OTC megadoses and then retested me to find I was still deficient.  She prescribed B12 injections.  The B12 seems to have stabilized, but still isn't ideal.  Then, she tested my Vitamin D and found I was severally deficient there.  OTC prescribed with no improvement.  Prescription Vitamin D (50,000 Iu) every 7 days and then retested.  I was still deficient and now my calcium was dangerously low, probably due to low D.  Continued with the Vitamin D megadoses and then retested-both D and Calcium dangerously low and now my TSH is out of whack.  The endo had me increase the D to 50,000 Iu every 5 days and add 600 mg of Calcium every night.  She said she won't increase my Synthroid because she doesn't think I'm absorbing it and then referred me to a GI.

 

I meet with the Gi who asks me about other symptoms.  I report heartburn, flipping between consitpation and diarrhea, gas and bloating...He orders the blood test below and schedules an EGD.

 

Immunoglobulin A, Qn, Serum
87 mg/dL (70-400)

 

Deamidated Gliadin Abs, IgA
2 units (0-19)
Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30

 

Deamidated Gliadin Abs, IgG
3 units (0-19)
Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30

 

t-Transglutaminase (tTG) IgA
<2 U/mL (0-3)
Negative 0 - 3
Weak Positive 4 - 10
Positive >10

t-Transglutaminase (tTG) IgG
<2 U/mL (0-5)
Negative 0 - 5
Weak Positive 6 - 9
Positive >9

 

Endomysial IgA  Negative

 

After the EGD, the GI tells me that I have esophagitis and a gastric ulcer.  They pulled tissue samples for a biopsy.  He started me on a PPI to heal the ulcer.  I heard from the nurse practitioner today, my biopsy results show lympohcytes indicative of early Celiac Disease but I have negative blood tests.  I return to the doctor this Wednesday.

 

Does anyone have any idea what this means?

   

 

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just what the NP said, early celiac.  Now, get yourself some Vitamin D3 at the grocery/vitamin store and take the same dose of that, that the doc prescribed.  Now, the B12, try finding the methyl- form, there are a few stores now carrying, if you don't find it, try on line.  A little sun every day is good as well.  good luck

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There are a few board members who had negative blood tests and a positive biopsy - that means it is celiac. For whatever reason, there was not enough autoantibodies in your blood to show up on the test, but you have the intestinal damage (which is what the tTG's EMA, and DGP's all test for).  Early cases of celiac disease often are serologically negative, that's why kids have a difficult time getting diagnosed - they haven't built up enough autoantibodies yet.

 

Low nutrient levels are a classic sign of celiac disease. You might want to take sublingual D and B since your intestines may not be properly absorbing it.

 

Good luck with your appointment. if for some reason the doctor says you don't have celiac (some docs want every test positive and all the planets and stars to align before they will diagnose) please try the gluten-free diet for a good 6 months. It takes a few a months for some symptoms to start improving.  Best wishes.

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Thanks for your help!  The GI said that because my villia are technically fine, in the absence of positive blood work he can't diagnose Celiac.  But, the vitamin deficiencies and intestinal symptoms were concerning to him.  His exact words were, "I may not be able to diagnose you, but if you were my daughter I would advise you to go gluten free."  What he's hoping is that a gluten free diet will help with the vitamin absorption.  He said he'll retest me again in a few months.

 

Now, to talk to the Endo about that Synthroid (which they apparently can't guarantee is gluten free)...

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