bunzilla

UPDATE: I got a call from GI Fri. He seemed to think I was seeking a definate diagnosis of celiac, which I already had through skin biopsy and bloodwork. He said there wasn't enough material for diagnosis. The lab couldn't get the sample to "lay out right"?.
I restated that the only answer I was seeking was in regard to possible cancer.
He did say that there was no evidence of cancer and he felt we could rule that out. I told him I was doing much better being gluten-free and considered myself pos. for celiac regardless of endo. biopsy results.
no repeat endo. for me

Thanks for the input, I should mention that the day of the procedure GI did say that it was definately positve for celiac.
He showed me a pic of the damage to the duedonum? So having celiac is not the issue, I do, and I carry on.
My dermatologist ordered the test to biopsy for cancer because of the increased risk.
I am leaning against having it done again, but like I said I need to talk to GI and Derm.
to get an informed opinion. Now if they offer to do it free, which I doubt they will, I would be more inclined to do it.
Just to have the peace of mind of a clean bill of health.

It sounds  alot like my initial symptoms. Although I was 49 when it first appeared. It started on one Knee. Of course at first I had no idea what it was. It later spread to the other usual places. I had no intestinal symptoms that I could associate with it.
Diagnosed through blood test, skin biopsy, and endoscopic biopsy with DH and, of course, celiac.
If celiac already runs in the family I would say there is a very good chance that is what it is. I.M H.O.
good luck.

After being diagnosed in Feb 09 I have had many ups and downs. I don't believe I am feeling sorry for myself. It is somewhat of a relief to no what was causing my terrible itching...DH..  I usually consider myself a happy person. I accept my fate and must move on. However, for awhile after diagnosis I would randomly break down once or twice a day. Something would trigger the sadness and the waterworks was on.(don't watch Oprah) .

Grocery shopping is always somewhat depressing. All the foods you have eaten all your life are on display, mocking you, knowing you can never eat them again.
One incident at Walmart comes to mind, My wife was looking for ingredients to make a taco soup for the daughter at college.
I pointed out the wheat flour in a can of chile beans, (its everywhere) .
She replied, "who cares, it's not for you anyway".  Now I don't blame her for her somewhat insensitive remark, but, it triggered the sadness in me and when we got to the car I had a major breakdown.
There must be some kind of chemical inbalance going on there. With the major change in diet and all.
Anyway, this website is such a blessing. I check the DH forum everyday and have found it very useful.
I had never been to the 'Coping with' forum but for some reason felt compeled to check it out today.
I believe everything happens for a reason and when I saw the 'depression' post I knew why I was drawn here.
It helps to know you are not alone and depressed feelings can be part of what we go through.
I have been better the last week or so, haven't cried at all, so maybe it has run its course
"Contentment makes a poor man rich, discontent makes a rich man poor."

My dermatologist said it would work reltively quickly, as little as five to seven days. I have heard of some people takeing it without any problems. I was doing great for a couple weeks then began to feel fatigued about 2 hours after taking it. After 3 weeks on 75 mg. I was a zombie. I decided the itch would be better than the dapsone reaction, and the itch was horrible.
I decided I had to tighten up my gluten-free diet. It has been up and down, but I think it is going the right direction.
I believe the less drugs the better but I fully understand your desire to lose the itch.
There were nights where I would lock my hands together in an effort to keep from itching, because, as you are probably aware, one itch could lead to scratching like a madman.
Somewhere on this forum I saw a report of a man who took dapsone for twenty years with little or no problem.
Eveyone is different in how they react I guess.
Good luck with the dapsone, my opinion is the sooner you can get off it the better you'll be in the long run.