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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.
I had an endoscopy six weeks ago. Before I had it done I talked to the surgeon about the fact that I was already diagnosed with DH through blood work and skin biopsy from a dermatologist. I specifically told him I already knew I have celiac and needed to have biopsy done to rule out things like cancer. After surgery GI said I should get results in a couple of weeks.
Six weeks later his nurse calls to tell me they had no results due to insufficient sample material.
She wanted to know if I wanted to schdule an appt. with GI, I asked for what reason, she replied good question, but she thought to discuss doing it again. I didn't know what to think, my head was kind of swimming a the time. The thought of going through all that crap again, the expense, the day off work, needing a ride home from hospital. Not that it was painful or anything, just the hassle,you know? I told her to have the GI call me. she said she will but he's on vacation till next week.
So, my question, do I need to redo this procedure? My work just changed ins. with a much higher deductable so there will be significant expense. I know money shouldn't be a factor, but it does play a part. Especially if it's not really needed.
I haven't discussed this with my dermatologist yet, I have an appt. in a couple weeks. I will seek his opinion on the matter and also my pcp's opinion. I just thought I would poll you fine people for some insight in the meantime.
Ths forum is a great tool and a wealth of knowledge that I have used often.
thanks for any input.
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.
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.
I just made meat loaf for the 1st time since being gluten-free. I think it turned out really well.
All it did was crush some Rice Chex cereal to replace the oatmeal that i used to use for filler.
About half a cup of crushed cereal per pound of hamb.
I took the dapsone for about 3 weeks total. I was doing so good I went from 75 mg. a day to 50 mg.
after 5 days I had a minor outbreak. Two blisters on my elbow and a couple on my rear end. I went back to 75 mg. and the second day I started to feel really fatigued, especially around 2 hours after taking it. The next 2 days it became progressively worse and I began to have psychotic side effects.
It came and went, but I felt like a zombie. Anxiety, staring off into space, very fatigued. It may seem odd but I would find myself just staring at my hand, or a corner of the ceiling, in some kind of altered reality state. I decided that the blisters and itching would be better than feeling like this! I quit the dapse. and it still took 3 days to get back to feeling normal. So far so good, I know I have no crutch to rely on now and must stay 100 % gluten-free. I haven't had any new outbreaks so far.
Thanks to everyone for the input.
I'm new to this so any help is much appreciated. I was diagnosed with DH about ten days ago by having a biopsy on my arm and bloodwork. I did begin eating gluten free even prior to test results. I was given a perscription for dapsone with instructions to start with 3 a day and work my way up each week to a total of 6 a day (25mg. each). Even before I started the dapsone I noticed improvement in my rash. I have had no new blisters since. No itching, redness or anything. OMG what a relief after 8 Mo. of suffering
So, i'm due to increase the dapsone to 4 a day and I'm wondering if it's nessesary. I don't like to take any more than I have to but was wondering if I need to build up my immunity with increased doses, or, since I have no new symptoms, I could level off the dosage or maybe even decrease it?