Newly Diagnosed?

[gfwarrior]

I had been diagnosed with GERD, IBS, blah, blah, blah for the past 8 years. A new doctor I saw had me tested for Celiac Disease. Honestly, I had heard about it but didn't know too much.

Anyway, he called me with my results and said according to the blood work, it suggests I have Celiac Disease. I also discovered I possibly have an uncle with Celiac. My doctor referred me to a GI doctor who did the biopsy. He said it was inconclusive... actually he seemed a little unsure of himself. Said my results were borderline?? He said that I should go for more bloodwork (Celiac Panel) even though my initial bloodwork was positive. Does anyone have any suggestions on what I should do? I've been gluten-free a little over a week and yesterday and today I'm actually noticing a difference. No cramps, gas, etc! I would have to start eating gluten if I want more bloodwork and I really don't want to poison myself anymore. I've listed my results from my first bloodwork:

Celiac Disease Comprehensive (at LabCorp):

Deamidated Gliadin Abs, IgA = 70 (high) Normal is 0-10

Deamidated Gliadin Abs, IgG = 40.3 (high) Normal is 0-10

t-Transglutaminase (tTG) IgA = 65 (high) Positive is > 10

**the test then says "Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy."

Any suggestions on these results??

Thanks so much!

[ShayFL]

With the right doctor you would get a definitive CELIAC diagnosis. Your doctors are just not very good at diagnosing. You can request that your biopsy slides be sent to another specialist for interpretation (a second opinion). It is your right.

But your blood panel is VERY ELEVATED. Why do you think that is? You shouldnt have ANY of those antibodies to gluten. YOU ARE CELIAC is the answer.

You are doing the right thing by being gluten free. Stick to it.

There is no need for further testing. NONE. IMO.

[gfwarrior]

Thanks ShayFL! It seems alot of people get an inconclusive biopsy. It also seems my GI doesn't know much about Celiac because when I ask questions, he has his physician asst. call me back with no new information... except to get my bloodwork tested again just in case. Is it crazy for me to go by my initial bloodwork that clearly shows gluten sensitivity or could it somehow be wrong?

So confusing!!

[Lisa]

Welcome to the Club!

There are no false positives in either the blood panel or biopsies, only false negatives.

You will find that most of us here have to educate out doctors. An example of that is that it takes over 11 years for a diagnosis of Celiac.

Biopsies can be hit and miss certainly not conclusive. It depends where and how many samples are taken. And someone an early diagnosis may not show damage.

[gfwarrior]

So do you think I should rest assured with my original bloodwork and not go for more bloodwork to confirm? It seems my GI is flustered because my bloodwork is so elevated but the biopsy was inconclusive. I actually feel pretty confident its Celiac... not only due to my blood results but also to my history - IBS, constipation, infertility, eczema, floating stools, cramps, etc.

I would rather go gluten-free than repeat bloodwork that already gave me my answer... does that seem crazy?

[Lisa]

Currently there are three ways to diagnose Celiac:

1. Positive Blood Panel for Celiac

2. Positive Biopsy

3 Positive Dietary Response

Either one of these test can be conclusive. Many people here are self diagnosed by positive dietary response and they are quite comfortable with that conclusion.

You can begin the diet and if you resolve many of your symptoms, that can serve as confirmation for you and your doctor.

A good book to start with would be Celiac Disease: a Hidden Epidemic by Dr. Peter Green. And this site will be invaluable to you. Feel free to ask away.

Here is a good article:

https://www.celiac.com/articles/21596/1/Is-...ease/Page1.html

[gfwarrior]

Thanks Momma Goose! I've been gluten-free for about a week and I would hate to start eating gluten again for another blood test. I'll continue the diet and hopefully see results soon!