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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.

Clarifying the test results
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6 posts in this topic

Hi Everyone, 

 

i am am brand new to the board.  Here's my background briefly.  I am 40. I have been trying to have a baby since 2010.  I have been pregnant twice and both ended in miscarriage. A new doctor for IVF ordered a recurrent loss workup.  I see my test results but have a few more tests to do before I am following up with the doctor.  My test results that I believe have to do with celiac are as follows:

 

endomysial Iga Antibody is negative

Tissue Transglutaminase Iga is 44.9. Standard range is 0-19. 

 

Reading through some posts here I think I'm understanding that the Iga antibody is used to show whether the tissue transglutaminase Iga is valid, and not a false positive? Is that accurate? 

 

After 6 rounds of IVF, I feel like I'm a googling expert but for some reason this is really confusing to me! 

 

Thank you in advance!

 

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the test you had which is listed as negative is called EMA

http://www.cureceliacdisease.org/faq/what-is-an-ema-blood-test/

your thinking of total Iga which checks that you are not deficient in Iga and are able to produce antibodies. people with an Iga deficiency can get false negative results.

since you tested positive for ttg iga that suggests you're not iga deficient and you most likely have celiac disease.

you can still have celiac with a negative EMA. not everyone will test positive for every test its very hit or miss. so even if none of your other tests come back positive for celiac, the positive ttg iga is enough.

looks like you've finally found the cause behind your problems

 

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Posted (edited)

Welcome!  You may have found the reasons for your fertility issues!  You only need one positive on the celiac panel to move forward.  Now, keep eating gluten and get a referral to a GI doctor.  The next step is an endoscopy to obtain intestinal biopsies.  

http://www.cureceliacdisease.org/screening/

Why not just try going gluten free without a diagnosis?  I think you will receive better care and may uncover other issues that could affect a healthy pregnancy (e.g. Anemia, thyroid issues, etc.)  beside, celiac disease is genetic.  A firm diagnosis can help others in your family.  

I just met a woman in a 100% gluten free bakery a few months ago.  She told me that she had issues with conceiving and miscarrying.  Six months after being gluten free (strict), and she was pregnant.  Yep, she had the little guy with her!  I hope the best for you!

 

Edited by cyclinglady
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Thank you both so much for your responses. I hope this is the answer. Unexplained infertility is really frustrating because you just keep hoping. But with a potential reason, hopefully I can adjust my diet and hopefully get pregnant! 

 

Thank you

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Emma 6 gave you great info on your test question.

I just wanted to say I am sorry for your losses . I hope that you are able to get the help and healing needed to move forward to better health and future conception. I look forward to the day you post that things are progressing in a positive way in your desire for a family.  I went through 3 pregnancies with what was likely undiagnosed celiac, I am a grateful mother that got to keep two on earth.

I have hope and best wishes for you.

Good luck.

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My daughter was recently diagnosed, and her doctor agreed, Celiac could very well be the cause for her recurrent miscarriages. She is very excited to have found the problem. Looks like you are on the way to success! Whoohoo!

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    • No, I didn't get a endoscopy or even  a blood test. I got digestive as well as other problems though on a number of occasions after being gluten free and accidentally eating something with gluten.  My symptoms were severe and dramatic so it was obvious to me that I had celaic disease.  I would ask the doctor what the endoscopy test is for and if there is any reason to take it besides confirming the blood tests.  From what I have read a false positive result on a blood test is unlikely but I don't know for sure. 
    • Thankyou for your advice i am getting so confused as some people are saying you dont need the biopsy and others are saying you do need it as it comes with other tests connected to thyroid, iron etc? just want to start being gluten free asap! did you go for the endoscopy? 
    • Hello One drawback is that there are no guarantees. You may go through the testing process and not get the answer you want or need. I did go through testing after having been gluten free and was stunned when I was told it was negative. By that point I'd gone through the challenge and seen various symptoms return so I thought I'd definitely be diagnosed celiac. The consultant advised me to go gluten free anyway and because I'd good evidence to support that I've not had any problems staying on the diet since then. So it can be done, it just requires a certain mind set, essentially I live my life as if the diagnosis was positive. No exceptions.   I think  this is where people make a mistake, if it's 'just' gluten sensitivity' then they can make exceptions on special occasions etc. I think that makes it harder to live gluten free because you still have to make choices and judgments about whether to eat gluten or not. For me, it's never an option so I don't have the conversation. Everyone around me understands that as well. Only you can decide on this. I don't regret doing it because I learned more about my bodies reactions but I found the challenge unpleasant as my reaction to gluten had become more extreme after removing it from my diet. You won't gain much for yourself, the answer is still the same and you already have enough info to know you should never eat gluten again, but your kids may gain if your positive diagnosis keeps them monitored in later life.  Best of luck!  
    • For me personally a medium result, in that situation,  would be enough to convince me that I had celiac disease.  Probably the standard of care is to also get a biopsy. Going gluten free is difficult so some people want to do all the tests they can so they can make the best choice. Generally more testing is thought of as providing better patient care. I think it is a personal preference thing though.   
    • Hi all i hope you can help me i have just had blood tests for celiac and they both come back as a positive result the 1st test was a low reading but the 2nd test was a medium result, i am now waiting a 4 week wait for a endoscopy/biopsy. Not trying to get out of the endoscopy as i have had this procedure before but is it really necessary to have this done when it has been confirmed in the blood tests, i know that they look to see if damage had been done but surely the damage is already been done. Any advice would be great
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