[sgsg]

DH experts, I need your help! One year ago, after a traumatic event in my life, I began experiencing these strange lesions on my body. They were located on my face, upper arms, and lower legs. They took a very long time to go away...I would say about 4 months or so and they left purple scars. They never itched, but were blistery and red and did not want to go away. Several months after these strange lesions, I noticed horrific itching on my buttocks accompanied by blisters. This kept me up nights. I tried every medication topically you could think of and nothing helped. I went on the internet and searched continuously for ways to help myself. I came across DH pictures and description. What I had seemed to fit the DH description best. So, I took myself off wheat and gluten. Then, I noticed a decline in the itching and slowly, the lesions on my body began to heal. After about a month, I decided that the whole going off gluten thing was way too difficult and my symptoms were probably not related to gluten anyway so I began eating wheat and gluten again. The rash and itching flared up terribly! So, I went off wheat and gluten once more. I tested my reaction to gluten three times before I went on a strict gluten free diet and have been free of gluten for about 4 months. My lesions are almost completely healed now. I feel better and was committed to a gluten-free lifestyle. Then, last night I went to a restaurant and was accidentally given bread that I thought was gluten free, off their gluten free menu, and I told the waiter that I thought this was the best gluten free bread I had ever eaten and he said, "Oh, no!" "That's not the gluten free bread!" I almost had a fit in the restaurant, but instead I kept my cool, went outside, and cried. I knew that in about 30 minutes I would begin with my symptoms...itchy, red, and blistery skin on my buttocks and oh yes, I forgot to mention that along with the blisters and red skin, I have also experienced an itchy anus, terrible acid reflux, and hemorrhoids to boot. All of which have gone away since going off gluten. I was devastated to think I had to go through all the pain and agony again....BUT, to my surprise, I am writing this, many hours later, without a single problem to report. I have not broken out, I am not itchy, and I feel fine. I'm totally confused and wonder now if I am intolerant to wheat/gluten after all! By the way, I was never diagnosed by a doctor. None of the doctors in my town know anything about celiac disease or DH and all they gave me was topical drugs or antibiotics which did nothing to help me. My symptoms were always helped by going off wheat/gluten.

My question is: Do people with DH always have a reaction when they ingest gluten or could my reaction be delayed and maybe begin tomorrow or next week sometime? What could be going on here? I'm so confused. Should I begin eating wheat again and see what happens? I'm afraid to do that because I feel so good being off the stuff. Please...anyone...can you help me figure this out?

[declan]

What a clear and detailed description you give! I have DH; until now, this year, i have always reacted when i don´t have my medicine (Dapsone). But just this year i have not been able to get dapsone, so I expected the worst, but nothing. Now i am taking a much reduced dose. Like you i am so scared of a further outbreak. I hope others will be able to answer our questions. Does DH go into remission? This is the first time i have been in remission from DH. Does it sometimes disappear? And i will watch with interest.


Glad to be so well and eating everything.

dec

[sgsg]

declan, on Jul 19 2009, 10:34 AM, said:

What a clear and detailed description you give! I have DH; until now, this year, i have always reacted when i don´t have my medicine (Dapsone). But just this year i have not been able to get dapsone, so I expected the worst, but nothing. Now i am taking a much reduced dose. Like you i am so scared of a further outbreak. I hope others will be able to answer our questions. Does DH go into remission? This is the first time i have been in remission from DH. Does it sometimes disappear? And i will watch with interest.


Glad to be so well and eating everything.

dec

Thank you so much for replying. Have a great day!

[dh mom]

sgsg, on Jul 19 2009, 12:54 PM, said:

DH experts, I need your help! One year ago, after a traumatic event in my life, I began experiencing these strange lesions on my body. They were located on my face, upper arms, and lower legs. They took a very long time to go away...I would say about 4 months or so and they left purple scars. They never itched, but were blistery and red and did not want to go away. Several months after these strange lesions, I noticed horrific itching on my buttocks accompanied by blisters. This kept me up nights. I tried every medication topically you could think of and nothing helped. I went on the internet and searched continuously for ways to help myself. I came across DH pictures and description. What I had seemed to fit the DH description best. So, I took myself off wheat and gluten. Then, I noticed a decline in the itching and slowly, the lesions on my body began to heal. After about a month, I decided that the whole going off gluten thing was way too difficult and my symptoms were probably not related to gluten anyway so I began eating wheat and gluten again. The rash and itching flared up terribly! So, I went off wheat and gluten once more. I tested my reaction to gluten three times before I went on a strict gluten free diet and have been free of gluten for about 4 months. My lesions are almost completely healed now. I feel better and was committed to a gluten-free lifestyle. Then, last night I went to a restaurant and was accidentally given bread that I thought was gluten free, off their gluten free menu, and I told the waiter that I thought this was the best gluten free bread I had ever eaten and he said, "Oh, no!" "That's not the gluten free bread!" I almost had a fit in the restaurant, but instead I kept my cool, went outside, and cried. I knew that in about 30 minutes I would begin with my symptoms...itchy, red, and blistery skin on my buttocks and oh yes, I forgot to mention that along with the blisters and red skin, I have also experienced an itchy anus, terrible acid reflux, and hemorrhoids to boot. All of which have gone away since going off gluten. I was devastated to think I had to go through all the pain and agony again....BUT, to my surprise, I am writing this, many hours later, without a single problem to report. I have not broken out, I am not itchy, and I feel fine. I'm totally confused and wonder now if I am intolerant to wheat/gluten after all! By the way, I was never diagnosed by a doctor. None of the doctors in my town know anything about celiac disease or DH and all they gave me was topical drugs or antibiotics which did nothing to help me. My symptoms were always helped by going off wheat/gluten.

My question is: Do people with DH always have a reaction when they ingest gluten or could my reaction be delayed and maybe begin tomorrow or next week sometime? What could be going on here? I'm so confused. Should I begin eating wheat again and see what happens? I'm afraid to do that because I feel so good being off the stuff. Please...anyone...can you help me figure this out?

hi, this is my first time on this site so i am testing to see if this works before I type everything in.

[dh mom]

hi,
dh is a definite diagnosis. it needs to be made by a dermatologist. Before you waste time with your basic derm doc
ASK them if they have ever SEEN it. Most haven't. Dr Habif in Portsmouth, NH has seen it, and published dermatology books on it. DH is a bit different than Celiac. It presented in our son exactly as you describe. He never
had any typical celiac symptoms, just this horribly itchy rash on elbows, knees, buttocks, back and face, neck, chest....it kept spreading. Get it diagnosed. Depending on your blood levels, you may need to be gluten free for up to a full year before it completely disappears. Dapsone is generally prescribed in order to keep the rash down. THERE IS NO OVER THE COUNTER MED THAT IS GOING TO TOUCH IT. TRUST ME ON THIS ONE! Our son couldn't tolerate dapson as it caused a liver reaction. (on dapsone, your liver levels need to be checked every 3 weeks), so he is on sulpha-pyradine, which is quite common in the UK, and only available from the gov't. A doc can get it for you.
I want to preface all of this by saying I am not a doctor. I am a mom, who has spent uncountable hours doing research on this, and hounding doctors and blistering skin disease specialists. Unlike celiacs disease, IF YOU DON'T HAVE celiacs disease, DH can take what is refered to as a "honeymoon". Meaning, it will go away!!!
Generally speaking DH shows up predominantly in early 20yr old males of United Kingdom descent. However, again, if you don't have celiac (which would be VERY unusual), in your late 20's, it will disappear for some folks, never to be seen again!! (It is extremely important after returning to gluten for 6 months or so, to get a biopsy done of your small intestine to check for celiacs disease. Even if you are symptom free, people with the scalloping in their intestines should avoid gluten forever!) I hope this helps. Good luck. if you write back, and are on the east coast, I can share some doc names with you.