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Anything Else I Should Be Doing?


BlueFenris

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BlueFenris Newbie

So I came across celiac disease completely by accident because I saw something about it and was curious so I looked up more info. As I was looking at stuff, I realized that the symptoms sounded a bit too familiar for comfort. I've struggled with anxiety, depression, bloating, constipation, and migraines for a long time. I also definitely have brain fog, I've had very low vitamin D test results, I've always been super pale, always tired, been very irritable, had major mood swings, insomnia, prone to canker sores, etc. The migraines became such a problem that last year I barely managed to pass my senior year of high school because I was having nearly daily migraines. We finally found a treatment that worked for a while but now the migraines are become more frequent again, and when I don't have a migraine I seem to have at least somewhat of a regular headache, and recently my stomach has been aching quite often too. So after seeing that all of these can be symptoms of celiac disease, I scheduled an appointment for Friday to talk to my doctor and have the blood tests done. I've got a list of my symptoms written down and am still on a gluten diet. Is there anything else I should do to prepare or does anyone have any pointers for me? On the one hand I hope it's not celiac, but on the other hand, if it is, a change in my diet could potentially change my life and take care of so many issues I didn't think were related to each other. 


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GFinDC Veteran

Hi,

If you are near a large city, you could look up a celiac support group now.  Contact them and ask if they know any good celiac aware doctors.  Many doctors don't seem to be aware of proper tasting processes.  If you do find a local celiac support group they may be able to help in other ways too.

Otherwise, it sounds like you are doing the right things so far.

BlueFenris Newbie

I do know there's a support group about an hour's drive from where I am. I'll get in contact with them! Thank you!

cyclinglady Grand Master

I would add that you request a full celiac panel (EMA, TTG and DGP).  Why?  Because the typical screening TTG test is very good, but it does not catch all celiacs (like me).  Here's the list of blood tests:

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BlueFenris Newbie
1 hour ago, cyclinglady said:

I would add that you request a full celiac panel (EMA, TTG and DGP).  Why?  Because the typical screening TTG test is very good, but it does not catch all celiacs (like me).  Here's the list of blood tests:

Open Original Shared Link

Okay, I will be sure to request that! Thank you for the input!

BlueFenris Newbie

Update! Had my appointment today and the doctor said she was going to order a full celiac panel without me even having to request it! I was overall impressed with how well my doctor handled this and listened to my concerns rather than writing them off like some people's doctors have.

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    • trents
      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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