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Really Scared

Guest BERNESES

By Guest BERNESES
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest BERNESES
Guest BERNESES
Posted

Hi Everyone- I'm pretty scared. I saw my doctor about three weeks ago and based on the symptoms I was presenting, she tested me for a thyroid problem and Celiac's. The thyroid came back fine and the Celiac's came back as follows:

Anti Gliadin Ab IgG 22.7 (weak positive)

Anti Gliadin Ab IgA 6.1 (negative)

Endomysial tissue transglutaminase 4.5 (negative)

So with the weak positive, I made an appt with my GI guy and immediately adopted a gluten-free diet. i am still not totally gluiten-free as one of the medications I am on has gluten in it and must be weaned off of very slowly. But I'm getting there. I have noticed some positive changes since going gluten-free.

Saw my GI- thought it would be clear cut but he does not thgink I have Celiac's- based on my symptoms he is testing me for everything from Hepatitis to lymphoma. the two symptoms he is most concerned about are 20 lbs. weight loss in 6 months and night sweats. But the things I've noticed are that my flatulence no longer smells like rotten eggs, I have more energy and i'm starting to look healthier.

Anyway, I had a CT scan on Friday and am waiting for the results. No matter what I plan to go completely gluten-free and lactose free as well (I was diagnosed with IBS two years ago).

But here's the catch- a friend of mine who is a dermatologist recently went to the national conference and attended a seminar on Celiac's for me and I guess in the last three months they've decided that the Anti Goliadin is obsolete and the Endomysial/transglutaminase is much more important.

So I don't know what the heck to think and i am really really scared! Thanks for listening, B

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FaithInScienceToo Contributor
FaithInScienceToo
Posted

Hi -

I am confused...did your dermatologist friend go to a conference on the effects of celiac on the skin? Or on the entire body?

--------------------------------------------------------------------------------------

My blood test came back 29 for Anti Gliadin Ab IgG. I saw the lab print out. It said <29.9 was 'negative,' but I have now seen somewhere else that 20-30 means weak positive.

Also, I was totally gluten-free for 6 weeks at that point in time, so I HOPE my Gastro doc will see '29' as positive...I have yet to get to discuss the results with him.

I had '0' for Anti Gliadin Ab IgA, but have read that after going gluten-free, it can drop to 0 quickly...but that IgG can take much longer to become negative...

I do not recall what my other test results were....

Anyway, I feel that I am in 'a similar boat'...

-------------------------------------------------------------------------------------

Just wanted to pipe in here, ask for clarification, and wish you 'the best' in this...

I know that going gluten-free has made a HUGE difference in my health...and I know now from my Enterolab tests results that I need to also go Casein-free, too, but I cannot manage that change just yet...one BIG step at a time...

Best wishes,

Gina

Guest BERNESES
Guest BERNESES
Posted

Hi Gina- Thanks- I think she may have gone to a forum on skin and Celiac's. But i've been going gluten-free to the best of my ability regardless of the test results and I definitely notice a difference. I'm tyhinking about Enterolab too. Don't understand why they put you through all this when they could just scrape your cheek and test for the gene.

I wish you the best of luck too, Hang in there :) B

cdford Contributor
cdford
Posted

Try to relax a little. Maybe my story will help. They tested me for everything from MS to AIDS, lymphoma to lupus, before they gave up and decided they couldn't figure it out. Of course I was negative for all of them except EBV. They checked me for MS every six months for five years they were so sure of it. Turns out the celiac disease had caused the neurological problems, the immune system issues, the glandular problems......... You get the picture. Hopefully they will not find any significant issues. They may very well find several different things, all of which are either treatable or will mediate once you have been gluten-free for a good while.

We will keep you in our thoughts. Let us know how it turns out.

lovegrov Collaborator
lovegrov
Posted

Based on fevers, weight loss and very bad night sweats my doctors were convinced I had lymphoma, even after they diagnosed celiac disease. Even had the PET scan. It was all caused by celiac disease.

richard

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