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Celiac? Gluten Sensitivity? Any Thoughts?

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Hello all! I've been a lurker here for a while, but wanted to register to share my story and see if anyone has any ideas/suggestions/feedback for me. Apologies for the length--I wanted to share as much relevant info as possible.

I'm 42 years old. In November of 2009, after having a pretty normal GI tract my whole life, I suddenly developed diarrhea. I didn't think too much of it initially, as it wasn't terrible and I assumed I had a stomach bug or something. A few weeks later, I realized this thing was sticking around too long, and I'd better see a doctor.

Long story short, months later:

Three different gastroenterologists saw me

Multiple blood tests (dozens) (including celiac panel)

Two colonoscopies

An upper enteroscopy (including biopsy for celiac)

Small bowel follow-through x-ray

Probably other tests I'm forgetting

I learned that although I was complaining of "diarrhea," technically it wasn't diarrhea because I didn't have increased frequency, volume, or urgency. My stools had just changed consistency very suddenly--they had become very soft and greasy. This is when I learned the words "malabsorption" and "steatorrhea."

Out of all my testing, everything was negative/normal, with only the following notable results:

-72-hour fecal fat study confirmed malabsorption (that was *not* a fun weekend, and served only to confirm and quantify what I already knew)

-One of my iron numbers was really low--my iron % saturation was 12, when normal should be something like 25-50 (sorry, do not have the report in front of me). My other iron numbers were fine. I have gotten low/borderline/anemic iron tests off and on my whole life. I'm a vegetarian now, but have only been so for the last 6 years or so--the low iron numbers definitely preceded my vegetarianism. And I eat a lot of iron-containing vegetarian foods.

-Vitamin D was very, very low--again, don't have it in front of me, but I think it was something like 12.

In the middle of all of this, I was bothered by the return of an intensely itchy rash on both of my elbows. Starting in the mid-2000s, I began getting this rash every spring, as soon as it got warm enough to be outside with short sleeves. After several weeks the rash would usually get less itchy, but it's made springtime miserable for me for the last few years. This never happened before about 5 or 6 years ago. I went to a dermatologist in spring of 2010, and she said she thought it might be DH. When I told her about my GI history, she got very excited and said yes, we need to biopsy this right away. Well, the biopsy came back negative for DH--but I noticed after the fact that the biopsy was taken from right in the middle of the rash, rather than unaffected skin next to the rash. So, I wasn't really sure if it was a false negative, but didn't pursue it.

Eventually the third gastroenterologist told me in late spring of 2010 that the best he could guess was that I had some nonspecific form of IBD. Neither my symptoms nor biopsy/blood test results really jibed with Crohn's or UC (or any other form of IBD he knew), but he felt that the mild inflammation of the terminal ileum was the only clue he could go on. He tried me on a few different medications which to his surprise made absolutely no difference in my symptoms--first Welchol, then Entocort. The next step after that would have been Prednisone, but since my symptoms were mild and I *know* what Prednisone can do, I said absolutely not, I'd rather live with what I've got.

For a long time I just lived with it, but over this past summer I started reading more about celiac and gluten intolerance, and wondering whether this might be a gluten issue, despite my negative bloods and biopsy results. Interesting family history:

-Mother and both grandmothers had autoimmune thyroid disease

-Mother has severe osteoporosis, developed relatively early (50s or 60s?) despite very healthy lifestyle

-Father had psoriasis

-Father's mother believed to have had RA, but was never diagnosed

-Whole family's short stature (I'm 5'1")

-Father was said to have had "various food intolerances" though I never knew about this before asking my mother recently (he is deceased and my mother is vague on the details)

-Mother had a history of GI problems, never satisfactorily diagnosed

-I've heard rumors of other relatives with autoimmune diseases but don't have a lot of detail (both parents were only children, so most of these relatives are their distant aunts and uncles, many elderly or deceased at this point)

-Younger brother was tested for anti-thyroid antibody and tested positive, though at this time his thyroid function seems to be normal; his doctor said they need to keep an eye on it

My own history includes a metallic taste that appeared in my mouth literally overnight about 10 years ago, which no doctor was ever able to figure out. At one point I was referred to a rheumatologist, and I had an ANA screen which was positive, but then I think they said the titer was negative. I believe they were looking for Sjogren's syndrome. I also have recurring, but mild, joint pains, mostly in my hands, for the last 10-15 years. A lot of mystery rashes (my mother recently told me I had had eczema as a baby, which I didn't know, but I did remember having random rashes growing up). I did read that DH sometimes is triggered by sun exposure, so my elbow rash seemed at least possibly suspicious.

I finally decided to get the Enterolab stool testing for anti-gliadin antibodies, as well as the HLA-DQB genetic test. I know there's controversy about these but I was frustrated with the non-answers I got from the doctors and just wanted another source of information. Got my results a month ago, and they showed my anti-gliadin IgA was 63 (normal < 10), and my genetic tests showed I had HLA-DQB1 0202 and 0301. Enterolab calls these both "gluten sensitivity genes," but my own research shows that 0202 in some cases is associated with celiac.

None of this is conclusive about anything, of course, but it was the push I needed to try the diet. I've been gluten-free for a month now. I'd say my GI symptoms have improved a bit, although it's very hard to say for sure (since it can come and go and I have better and worse days). I've noticed my joint paints--also historically off and on--have lessened. I'm *very* curious to see what happens in the spring when I bare my arms again, and see whether the rash comes back.

So I don't have any specific questions now, but I'm wondering if anyone has any thoughts about my history? Other things to try? Anyone have a similar history?


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Sorry, just to add one thing: I realized when I saw my own post that I had left out a little information in the process of editing it down (yes, it was originally longer!). My colonoscopies showed no abnormalities with the exception of what was called "mild inflammation of the terminal ileum." The doctor who did the first scope said that sometimes they see this and it doesn't mean anything, so he didn't feel that in and of itself it was necessarily a sign of a problem. Several biopsy samples were taken and they were all either normal or just showed that mild inflammation, but no characteristic signs of any well-known diseases. Upper scope was negative for celiac (or anything else).

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