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PREBRAENIKAE95's Photo PREBRAENIKAE95 Posts: 1,542
11/13/13 10:29 P

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I had a rash on my forearm. I went off gluten and within a week the rash was gone. I am also dairy free.

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KJEANNE's Photo KJEANNE SparkPoints: (39,604)
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11/13/13 9:56 A

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I was diagnosed with DH in 1972 - I was 19 years old. The majority of my body was covered with the blisters - except my face. It was very painful. They had to take two biopsies before the diagnoses was made. To this day (I'm now 60) I have a few scars to remind me of the time when the disease was painfully active.

Before the diagnosis, I had always had problems with constipation, but it wasn't until i started eating whole grains that the blisters developed. The doctor put me on a medicine but that made me sick. She informed that I would have to go on a gluten free diet. It was very difficult to maintain a GF diet in the 70's, 80's, and 90's. No one knew about gluten and they was no labeling. I had to know what ingredients might have gluten. The only gf breed was like eating Playdo! YUCK! I adopted a naturally GF diet - corn tortilla were my bread, no sauces, no gravies, etc: just grilled meat/fish, fresh veggies and my starch was rice, potatoes or corn.

When I ate out I had to grill the waiter and often had to talk to the cook/chef because they didn't know about gluten either.

After the initial diagnosis and getting on the GF diet for three days I had my first pain-free bowel movement. WONDERFUL!

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11/3/13 12:32 A

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I had a blistery rash that began the day that I began taking celebrex. For three weeks I was told that it was the medication.2 weeks on 40 mg of prednisone did not help. I finally saw a dermatologist last week and he said it looked like D.H. I am awaiting biopsy results....I was glad to find this on sp.....

RMREEVESOLIS's Photo RMREEVESOLIS Posts: 967
10/12/09 8:38 P

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I know my father had gluten issues and I know that I do. My father passed away when my mom was pregnant with me, so it has been many years and my mom can't remember if he had testing done for celiac or not. She only remembers that right before he died that he had tests done that showed he was 'allergic" to wheat/gluten (as she told me). But I definitely was going to let my siblings know that they should get tested for it if she has a positive test. And I was going to check with our 3 year old daughter. She doesn't seem to experience any issues though.

Thank you very much for your all information!



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JENCORINNE's Photo JENCORINNE Posts: 1,933
10/12/09 3:02 P

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Rachel, yes the rash needs to be present to do the skin biopsy since they take a sample of the rash.

Once your 19month old gets a positive diagnosis with Celiac Disease you should, almost need to have the rest of your family tested because it is a genetic disease.

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TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 12,053
10/12/09 9:54 A

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I have DH. In 1978 my itching was so bad I finally went to a Dr. It was all over me by this time. There wasn't a place that didn't itch and I mean not a place. A biopsy was taken. I was told at that time not to eat wheat and only after I was diagnosed with CD did I learn that if you have DH you have CD. I went off wheat for about 3 months at that time and got all cleared up, but the diet was so hard that I quit. I still had flare ups but when they got bad I would just stop eating wheat until it cleared up. Not good, but it is what I did. I also found out at the same time I had iodine allergy. Many DH patients have this too and it can cause the same blistering itch. Hope this help and sorry to hear you little one is having such issues. Presently the only way I know if I have had gluten is if I have an out break. I very seldom have stomach issues, but do get the big D.
Donna



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RMREEVESOLIS's Photo RMREEVESOLIS Posts: 967
10/12/09 9:20 A

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thanks very much for the responses. My thought was that these were just the classic areas for the rash to appear, but didn't need to be in all the areas to be consider DH.

My question about the skin biopsy, does she need to have a flare up for the skin biopsy to have a more accurate read? I keep her on a GF diet, but from time to time our 3yr is wanting to be "nice & share" her food with her sister.

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ILLINITEACHER52 Posts: 7,257
10/12/09 8:11 A

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My rash was on my upper arms and lower legs. It cleared up when I went GF. I hope they get things cleared up for your little girl.

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JENCORINNE's Photo JENCORINNE Posts: 1,933
10/12/09 12:48 A

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Hi Rachel,

Poor baby girl, but the good part is with skin biopsy of DH your daughter won't need blood work or endoscope to diagnose CD.
DH doesn't need to be on all 3 areas, mine actually starts on the back of my right hand, then I swear it was almost overnight when it spread to my elbows, knees and behind. My history is I wouldn't believe that I actually had CD then got this rash on my hand about a year and half ago, I don't have insurance so put off going to the DR. When it spread I figured out it was DH and finally went GF. It took a few months to clear up and completely stop itching.
I've had a couple of flares when dealing with cross-contamination but limited to my hand.
Another thought for the Dr is the rash can also hit the back of her head but can hit any part of a body. The rest of what you were writing about are also classic CD symptoms.
Good Luck with your Dr appt and getting your daughter healthy.

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RMREEVESOLIS's Photo RMREEVESOLIS Posts: 967
10/11/09 11:54 P

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I'm curious if anyone has dermatitis herpetiformis and won't mind sharing with me your experience with it. I'm trying to get things figured out for my youngest daughter, who is 19 months old. She has been to an allergist and GI, then we moved and I'm getting her re-established with new doctors. She has seen the allergist here. Her new GI appointment isn't until next week. She has had skin and blood test done for allergies, but they have come back negative. Which I do know if it is a gluten intolerance or celiac, it won't show up on an allergy test, right? I still don't give her gluten though and limit her dairy. Every time she eats gluten, her bottom breaks out horribly. She has loose stool almost all the time, restless, doesn't sleep well, and is more fussy. And when she has too much dairy, she reacts badly too. And she has thrown up the 3 times she has had soy formula or soy milk. so, I don't give her soy either!
About a week after our appointment with the allergist, he called to follow up! First of all, I was shocked he called. Then he gave me a name of something he thought could be explaining her skin issue... Dermatitis herpetiformis. But he wasn't sure because she only gets it on her bottom and not on her knees and elbows. He said to tell the GI doctor when we see her next week. My daughter has gotten blisters on her check 2 or 3 times, but at the time I thought they were cold sores, but they were really bad? I'm assuming she won't have to have it in all areas, would she? When I got online to do some research, I came across photos of this skin condition and the open sores and redness look just like what she gets when she eat gluten. I don't know if they blister first. Maybe the blisters burst before I remove the diaper? If she doesn't eat gluten, her bottom is clear. But I can guarantee if she has some gluten, her next bowel movement will mean she will get these sores/rash on her bottom.

If you have this skin condition, would you please share your experience with me? I'm trying to help out my daughter and find answers for her. I want to go well prepared for this appointment, especially since I have to drive 2.5 hours away for it!

Thanks in advance!
Rachel

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