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I am in a state of confusion! I am 33 yrs. old and was diagnosed with DH
when I was around 15. My doctor has never had me maintain a gluten free diet
and has not been concerned with my taking dapsone( I usually take 25 mg as
needed). I see him once a year and he does a couple blood tests, but they
always have come back okay-or at least I think so. Anyway, recently, I
started having a lot of indigestion, mental cloudiness, headaches,
bloating,(depression for a few years), tingling in my fingers (I thought was
carpel tunnel) a severe skin rash on my face and now on my body on
non-typical DH areas, and chronic fatigue-to name a few. I have ALWAYS had
really dry skin.  The main thing I was concerned about, was that my dapsone
no longer seems to work. So, I started doing research on DH and gluten free
diets because I thought they might be related and discovered the sypmtoms of
Celiac Disease. I was amazed to see that I have many of the syptoms of the
disease and that DH and CD are closely related. I went back to my doctor
with this information and he said that it is all stress and that I do not
have celiac disease. He did not even do any tests. He referred me back to my
family practitioner to evaluate if I wished.

I did go to my family physician and he has run some tests and they have come
back "moderately positive." I also have an appointment scheduled with a GI
in my area in a couple of months. I guess my question is, can anyone lend
some advice on what I should be doing and do I need to keep ingesting gluten
until I see the GI Dr. so that the tests aren't altered? Also, can anyone
recommend a good doctor familiar with DH and CD in Indiana? Finally, I've
read that anyone with DH is already a celiac. Is this true? I am afraid of
the damage that my small intestines may have after 18 years of gluten
ingestion. Please help!

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