Emsstacey

Thank you for your responses! I guess that I have either learned to live with my main symptoms or they just aren't that bad... that the diet doesn't make a huge difference noticeable. Of course, I have only gone 1 month at best. I do live with a lot of fatigue that I would expect to get better as well as general gas/bloating.

What makes me most worried is that if I have a more silent celiac-- then I am continuing to damage my bones as well as other issues. I was shocked to have mild osteopenia at 30 years old as well as a vitamin d level of 18. I also have had shingles every couple of years and I'm just not sure that if my immune system was not battling something like gluten-- that I would have already been dealing with such things.

Anyways, I think I know my answer, but it's so hard to commit when I don't get a pretty quick "sickness" from what I eat. It would be easier if I ran to the bathroom immediately and knew for sure even without an official diagnosis.

I have a long, suggestive history of celiac. Lifelong difficulty gaining weight, mouth sores, lactose intolerance, ITP, anemia, family history, and gi symptoms. About 12 years ago had a scope looking for "malabsorption", celiac never mentioned. I don't remember any biopsies taken, the dr just told me afterwards that it looked fine. Fast forward to two years ago, started feeling awful with extreme fatique, body/joint aches, repeated shingles, nonstop mouth sores and osteopenia and extremely low vit d. My dr ran a celiac panel and everything came back negative except for a high deamidated gliadin peptide. I was told that it was not suggestive of celiac but I could see a GI if I really wanted to. I was sick of dr's and opted not to press it.

Now, I wonder every day whether I do in fact have celiac. I have attended a gluten free support group and noone in the group has had good luck with the local dr's. I would like to have an official diagnosis buti have been afraid of wasting my time with dr's who aren't up to date. I have been following the new research on the DGP test and it sounds very accurate and sensitive... Coupled with family history of celiac and many autoimmune diseases and my own suggestive history... It sounds unlikely that I don't have gluten issues.

I would love your opinons on whether I am foolish to self diagnose and forego a formal diagnosis? It seems so often that we have to take our health in our own hands anyways... Why not now?

Thank you!

Hey everyone! Thanks in advance for any insight you can give. :-)

I have had a rash on the back of one thigh that comes back every year or two, lasts a few weeks, heals to a hyperpigmented area and then finally fades away months down the road. In the past it has been called shingles and treated with antivirals but the antivirals haven't really made a huge difference. I woke up itching yesterday and lo and behold... it's back. In the past two years, I have had some inconclusive celiac testing (high positive for deamidated gliadin peptides) and this has made me wonder if this recurring area could be dh.

It is a raised, hot, red area that started about the size of a quarter and within 24 hours has gotten a bit bigger. It started with little bumps inside the red area and today has turned to little blisters. It started out itching really bad and today it is more of a stinging sensation with the occasional itch to it.

I needed to find a new family doctor since my last one moved and was lucky enough to get into someone yesterday. He said that he thought there is a very low chance of it being shingles and that unless we biopsied it-- we wouldn't be able to know for sure what it was. He said that Herpes viruses tend to recur in the same area but don't often appear on non-mucous areas. He said that if it were him, since it heals within a couple of weeks and only comes back every year or two-- that he wouldn't really worry about it. He also said there are so many rashes who have overlapping details that it would be hard for him to pinpoint a specific one without a biopsy but he didn't seem interested in biopsying it.

After googling herpes skin rashes, it doesn't really look exactly like those and most of the dh pics I have seen are more widespread with one vesicle per red area and I have maybe 10-15 vesicles on the one red area. Otherwise, it sounds like dh with the exception of being symmetrical. I have been eating more gluten in the past few weeks in preparation for further testing to try to get a conclusive answer to whether I have celiac-- so not sure if that has anything to do with it. It also seems to come back during bad allergy times of the year.

THanks for any insight you guys can give!