Celiac testing done and still not sure

[shad]

Hi all 

So I have done a few tests done and I'm still unsure what I have. 

My initial stomach issues began 8 years ago. And the gastrointrologist kept saying IBS. 

I was used to stomach pain and being bloating specially if I  ate ambiguously. But things changed after last September after I dated a girl who apparently had an autoimmune disease but she said her autoimmunity is fibromyalgia!! 

I started having semi- diarrhea and lost around 5 to 10 lbs and hair started to fall. 

LAST MARCH:

1.

I did a serology test 

And my IgG came borderline high 

IGA antibody WAS NORMAL

And I was not IGA SERUM DEFICIENT.

2. ENDOSCOPY

and the doc said your Vili looks beautiful and no sign of h.poly. tho I asked for pictures and he said he didn't take any.

 

3. Did generic testing and it came back as dq2.5 and DQ7.  Not sure what it means, I wish I could post a picture of it here. I know dq2.5 is not good for celiac .

4. I don't feel much different when on gluten-free diet. However due to my strict first of rice and meat and no dairy , fruct... And not eating too much. Severe stomach pain is very rare. I did another IgG test and this time I came back in normal levels. I should also mention, I have had floating poop for a long time. Its almost impossible for me to gain weight. (Since I was young).

If I eat a lot or late at night I pretty much get a soft stool next morning. I have a very deserve  stomach and I think I don't absorb my food properly. I don't yet know about food intolerance but I am doing the endolab soon. 

I have lost an extra 10 to15 lbs since going on this diet for the past two months as I now have malnutrition. I used to eat alot before and I love food. I'm now depressed and confused and always scared to eat ?

 

[GFinDC]

Hi Shad,

Welcome to the forum!

Sometimes we just don't get firm answers from the medical world.  Especially when it comes to celiac disease diagnosis.  That doesn't mean we can't treat it ourselves anyway.  Once all the celiac testing is done, it's a good idea to trial the gluten-free diet for 3 to 6 months and see what happens.  If you feel better not eating gluten then that's generally a good reason not to eat it.

[tessa25]

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

It looks like you only had the TTG tests and IGA done. If you have been eating gluten you can get the DGP and EMA tests done.

It looks like your doctor did not do any biopsies during the endoscopy.  Maybe get a new gastroenterologist to do the biopsies.