Looking For Opinions

[WestCoastGirl]

Hey, everybody. First of all, I know you're not doctors. I would love some opinions, though.

I'm just recently piecing together the puzzle that has been following me around since I was about 11 (except for the fact that I was always smaller than everybody else, and in fact went from age 8 to 10 without gaining a single pound...the doctors told my parents not to worry; and except for chronic constipation, which later turned to sometimes-constipation, sometimes-D). I have not gotten tested for Celiac and am not going back to gluten now to do it...I know there are a lot of people who feel the same way I do.

Anyway, my body's problems all seemed to start when I was 11. That was NOT a good year. It was at that time that I first felt "addicted" to carbs, refined ones. That was also when I started overeating (I couldn't control myself around wheat), started getting frequent nausea, depression, insomnia, extraordinarily dry eyes, bloating, lethargy, etc.

It was also the year that I got "the thing on my neck". "The thing on my neck" started out as something painful and kind of tingly, yet also itchy, so I scratched it and it seemed like it...spread. I never actually looked at it (at that time). I was frightened. When I scratched it, it felt like things were "opening" (sorry) and it was wettish, then it would dry and would itch and hurt worse than ever. Creams only seemed to make it worse. It went on and on. Finally I begged my mother to take me to the doctor and he said it was ringworm, gave me an antifungal, told me to keep my hair up off my neck during treatment and gradually it went away.

After that, I started getting it periodically...maybe every six months or so, from that time through about the end of high school. It would usually be on the back of my neck, but sometimes would be on the sides. I didn't see pustules but it did look exactly like quite a few pictures I've now seen of DH. It was SO raw and painful yet itchy...such a horrible combination. I went to more doctors. One asked me if I'd ever had lice...in horror, I told him "No!". He checked my scalp and lo and behold, no lice, duh. He said it was psoriasis and gave me a psoriasis cream which didn't work. I was so desperate. It was awful. Months later I went to another doctor. He said it was eczema. A different cream. No relief.

The only thing that ever did seem to work for this was some sort of antifungal cream. Weirdly, though, all the doctors except one insisted it wasn't a fungus. I never had anything biopsied. Then, as I entered my 20s, "the thing on my neck" (never thought of a better name for it than that) seemed to come much less frequently. I'd use antifungals and keep my hair up away from it and it would gradually go away. Only once or twice was it elsewhere; at those times I had it on my face, right next to my mouth, and once on the bridge of my nose.

I'm now gluten-free, and I haven't had a breakout in about two years (but haven't been gluten-free anywhere near that long), so there's nothing to get biopsied. So I'm looking for opinions...does this sound like anyone else's symptoms? I'm 43 now, BTW.

[Dixiebell]

Certainly sounds like it could be DH. Isn't it amazing that some Dr.s are so sure of themselves that they won't get a biopsy just to make sure that their 'hunch' is right or wrong, especially if their treatments haven't worked?

It may take several weeks or it may just be a few days, if it is DH, for you to break out again. If you do have a break out, call the Derm. and see if they can biopsy next to a blister so you can find out what it is.

[WestCoastGirl]

I will, Dixiebell...thank you!