positive bloodwork inconclusive biopsy

I have been at this for a while and its been a really long journey. I'd like thoughts on my various tests because I feel like I'm caught in the doctor quagmire.

I have a long history of anemia that does not respond to oral iron. I have had almost constant headaches for the last 20 years. Also refulx and what I think may actually be a DH rash.

I had positve blood work:

Antigliadin IgA 17 range <20

and antigliadin IgG 59 range <20
Anti-tissue Transglutaminase Antibody (tTG) IgA 74 range <20

Below this on the blood work it says:

"postive findings of anti-tissue transglutaminase are essentially
diagnostic of gluten sensitve entrpathy."

I had a biopsy 5 weeks after getting the blood test results. I had
been gluten lite for 4 weeks before that and then gluten free for 5
weeks on the advice of my refering doc and sister in law who is also a doctor.

When I had the biopsy, they told me they saw scalloping of my duedonal folds suggestive of celiac immdeiately after the endoscopy. The doc felt confident that the pathology would come back positive. It was, however, inconclusive. Because it was inconclusive, I didn't even get to meet with the GI doc for a follow up for his thoughts.

From the biopsy report:

Sections from the duodenal mucosal biopsies contain focal minor acute and chronic inflammation with neutrophils, lymphocytes and plasma cells in the lamina propria. The brush border is intact. There is no evience of dysplasia or malgnancy. The crypt to villious ratio is within normal limits.

Diagnosis:

Duodenal mucosal bippsies:
focal minor acute and chronic inflammation.


Would one expect to find on biopsy chronic inflammation with neutrophils, lymphocytes and plasma cells in the lamina propria after being GF for that length of time with normal villi?  Would that indicated celiac with healing?  I am concerned because they found inflammation and the scalloping of my duodenal folds yet I don't even get to meet with the doc to find out what it might be if its not celiac.

I have stuck to the GF diet and feel way better. I'm not sure if I should find a GI doc and get another opinion or what? I really would like a definitive diagnosis it makes it easier dealing with other doctors down the road and for dealing with my extended family.

[CalGal]

Pinky, you're in a tough place, but I'd really suggest you consider yourself celiac and continue with the gluten-free diet while trying to get more answers. But I think you're going to find out in the long run that you are celiac.

If you were gluten-free for quite awhile before the biopsy was done it's very possible that your biopsy would be close to normal - or at least show no major issues. But you are showing focal minor acute/chronic inflammatory patterns, which should indicate to any doctor that something is not right.

With most biopsies they count the number of IEL's (intraepithelial lymphocytes). If the number is 0-20, it's normal. If it's greater than 40, it's celiac. But what about 20-40? Most GI docs call that negative - not so. Something is clearly going on, but it's not viewed that way, unfortunately.

I'd like to make two suggestions, get an allele (gene) test done, and also do a fecal antibiody test. You can read about both at enterolab.com. For many who seem to form into the 'in-between' diagnosis, those two tests can sort things out. There are many who only really find out they're celiac after having those tests.

Despite what a lot of doctors say, the 'gold standard' - the biopsy - isn't that great as a diagnostic tool.

But overall, if YOU feel you do better being gluten-free, does it really matter if you have a diagnosis or not? If you're well, happy and healthy going gluten-free, do it.

[pinkyroo]

What would a fecal antibody test from entrolab tell me that I don't already know?  I know I had quite high antibodies in my blood.

There was no IEL cound on the biopsy repot.  I have a copy and copied word for word what was on it.

I am rather frustrated that I have damage to my small intestine, its scalloped and has inflammation, I have high antibodies in my blood, and this doesn't seem to concern anyone but me.