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Julz

By Julz
in Dermatitis Herpetiformis

Recommended Posts

Julz Newbie
Julz
Posted

Hello Everyone,

I have been recently diagnosed with celiac and DH. I have had the DH symptoms of REALLY itchy skin on my arms, hips, and thighs for about 1 month now. It have been off and on prednisone twice so far and it instantly clears up but as soon as I get off the medication, I flare up again. This is the second flare up and it seems to be worse :( I am following a strict gluten free diet and I changed all my laundry detergent, lotion, bodywash...etc. Is there anything else that I can do?? Does anyone know of any home remedies that help with the itching? The only thing that seems to help is ice and the traimcinolone cream (somewhat).

Please help!!

Thanks,

Julz

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J in Cincy Newbie
J in Cincy
Posted

Ask your dermatologist about dapsone or possibly other drugs to treat DH. Dapsone worked for me within a few days. From what I have read it can take months of a gluten-free diet before you can reduce dapsone dosage and be symptom free. Good luck!

Hello Everyone,

I have been recently diagnosed with celiac and DH. I have had the DH symptoms of REALLY itchy skin on my arms, hips, and thighs for about 1 month now. It have been off and on prednisone twice so far and it instantly clears up but as soon as I get off the medication, I flare up again. This is the second flare up and it seems to be worse :( I am following a strict gluten free diet and I changed all my laundry detergent, lotion, bodywash...etc. Is there anything else that I can do?? Does anyone know of any home remedies that help with the itching? The only thing that seems to help is ice and the traimcinolone cream (somewhat).

Please help!!

Thanks,

Julz

Julz Newbie
Julz
Posted
  • Author

Thanks for the info. :D But for right now I am trying to do everything not to take medication because I always seem to have side effects to everything! lol And being a pharmacy student, I know that Dapsone has some bad side effects. Is there anything else that you do that is non-Rx to alleviate the symptoms?

Thanks,

Julz

Mike M Rookie
Mike M
Posted
Hello Everyone,

I have been recently diagnosed with celiac and DH. I have had the DH symptoms of REALLY itchy skin on my arms, hips, and thighs for about 1 month now. It have been off and on prednisone twice so far and it instantly clears up but as soon as I get off the medication, I flare up again. This is the second flare up and it seems to be worse :( I am following a strict gluten free diet and I changed all my laundry detergent, lotion, bodywash...etc. Is there anything else that I can do?? Does anyone know of any home remedies that help with the itching? The only thing that seems to help is ice and the traimcinolone cream (somewhat).

Please help!!

Thanks,

Julz

Do you know about eliminating iodine? Commonly found in table salt and shrimp, things like this. You should check with your doctor before eliminating anything though. Took me a long time to figure out the iodine connection. Hope this helps. P.S. It still can take months for the antibodies to clear the skin. Mine was about 9 months before significant improvement. Hang in there! Mike

Julz Newbie
Julz
Posted
  • Author

I had read something briefly about Iodine, but I have not tried reducing my intake yet. I am going to start tomorrow though! Thank you for the information. So do you know of a website or any diet that you have tried that works? Probably just reducing salty foods like chips, popcorn....stuff like that right?

Thanks again!

Julz

Mike M Rookie
Mike M
Posted

I don't know of a special iodine free diet, I never looked as I am so sensitive to gluten that I just eat mostly single ingredient whole foods. I do treat myself to sea salt potato chips once in a while (Cape Cod Kettle Chips). I don't seem to ever react to these. For many months I did not add salt or eat any canned foods with salt labeled on them. I do use Himalasalt (himalayan Sea Salt) now. I've not reacted to this either. The iodine will trigger a reaction and sometimes fool you into thinking you got glutened. Gluten will give a reaction as well as just the iodine, especially in the beginning. Slowly over time the iodine plays less and less of a roll, this has been my experience. I will still get itchy if I get glutened, although not a major irruption like in the begging. Hope this helps. Mike

LisaInTexas Newbie
LisaInTexas
Posted
I don't know of a special iodine free diet, I never looked as I am so sensitive to gluten that I just eat mostly single ingredient whole foods. I do treat myself to sea salt potato chips once in a while (Cape Cod Kettle Chips). I don't seem to ever react to these. For many months I did not add salt or eat any canned foods with salt labeled on them. I do use Himalasalt (himalayan Sea Salt) now. I've not reacted to this either. The iodine will trigger a reaction and sometimes fool you into thinking you got glutened. Gluten will give a reaction as well as just the iodine, especially in the beginning. Slowly over time the iodine plays less and less of a roll, this has been my experience. I will still get itchy if I get glutened, although not a major irruption like in the begging. Hope this helps. Mike

This explains SO MUCH to me. I just got back from the doctor today and he said I have acne. I know it's not. It just flared up last night and I had an accidental gluten bomb on Tuesday. I never knew this about iodine. I (literally) dip my potato wedges into salt. So sad. One more thing to remove. So long as it helps! THanks for the post. ~Lisa

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flourgirl Apprentice
flourgirl
Posted

Hi! Been a while since I've chimed in. I had to switch to Kosher salt...or any salt not iodized. You should also be aware that some anti-inflammatories like Ibuprofen can cause a flare up. With me, both of these cause major rashed, and they last for weeks. Same with accidental glutening. I, too, don't want to take meds if I can avoid it. There is a clear calamine that helps take the edge off the itching....but I still scratch myself raw in my sleep. I guess in time the rashes become less and less as you get further away from gluten and other causes. Hope you find relief soon! :D

ang1e0251 Contributor
ang1e0251
Posted

It took weeks for my DH to clear up. I know it's supposed to be safe but this spring I had a DH reaction to the caramel coloring in my coffee syrups. When I stopped those, it cleared up...sigh.

Julz Newbie
Julz
Posted
  • Author
It took weeks for my DH to clear up. I know it's supposed to be safe but this spring I had a DH reaction to the caramel coloring in my coffee syrups. When I stopped those, it cleared up...sigh.

Finally I am seeing relief!! I think staying gluten free and changing all my topical stuff really helped. I do have one question about the iodine though. How can you tell if something has iodine in it? I know that sodium is different than iodine. But if it says salt, how can you tell if it is iodized or not? I tried searching on the internet...but didn't get that far. And a lot of the gluten free frozen foods have sea salt in them :( So i guess I should stay away from those when I have a DH reaction? I don't know.. I'm so frustrated. I feel like I cant eat anything.. lol If anyone has any good suggestions on places to eat out at or food that you can buy at the grocery store...that would be great!.

Thanks,

Julz

  • 2 weeks later...
Julz Newbie
Julz
Posted
  • Author

Hey everyone,

I think I somehow got glutened again :( I was just wondering if there was anyone out there like me that has NO time to cook and what type of things do you eat on the go? I'm also trying to stay low on iodine because of the DH. I just started pharmacy school and it takes up allllll my time, which is why it is so hard for me to cook.

Thanks for anyone that helps! :D

Julz

ang1e0251 Contributor
ang1e0251
Posted

Julz,

Congratulations on pharmacy school!! We definately need celiacs in that field.

I'm lucky that on the block where my flower shop is, are two restaurants that will make meals for me. At one I get a cheeseburger, no bun and fries. The other I can get Mexican food. If you can get a local restaurant on board with you it will help a lot.

That said You of course can take the obvious; fruits, nuts, trail mix. cheese slices, Hormel Naturals lunchmeat. Rice Chex, chips. Do you have access to a microwave? There are frozen dinners that are gluten-free. The taquitos in corn tortillas, popcorn.

Hope that helps,

Angie

ohsotired Enthusiast
ohsotired
Posted

Watch those taquitos in the corn tortillas too, though! I almost bought some, and I did the smart thing and read the ingredient label first........all the ones at this particular grocery store had wheat in them (several different brands even, though unfortunately, I don't remember which ones).

So just be sure to read read read your labels!

Smiling-Eyes Newbie
Smiling-Eyes
Posted
Hello Everyone,

I have been recently diagnosed with celiac and DH. I have had the DH symptoms of REALLY itchy skin on my arms, hips, and thighs for about 1 month now. It have been off and on prednisone twice so far and it instantly clears up but as soon as I get off the medication, I flare up again. This is the second flare up and it seems to be worse :( I am following a strict gluten free diet and I changed all my laundry detergent, lotion, bodywash...etc. Is there anything else that I can do?? Does anyone know of any home remedies that help with the itching? The only thing that seems to help is ice and the traimcinolone cream (somewhat).

Please help!!

Thanks,

Julz

I was on Prednisone for months, a dermatologist put me on Dapsone, the doctors where preaching about the terrors of steroids. Hmphh, I think Dapsone is latin for; nastiest little pill ever invented by a sadist. I was suicidal, and borderline psychotic, all in 3 weeks. I'll take that again the day I eat gluten willingly. I metered my own steroids, up to 40 mg a day. Prednisone was a walk in the park compared to Dapsone, and those of us that have been on Prednisone know what an emotional nightmare it can be. I wish I could offer some advice for the itching, calamine lotion works for some of us. This last week I have been feeling better than I have in years, until I had a cup of Stephens Hot Chocolate today, it said it was Gluten Free, the ingredients listed Maltodextrin, I called the manufacturer, they said it was made from soy. WHEN IN DOUBT - LEAVE IT OUT!!!! My right index finger and index finger are swelling as I type, all in about 6 to 7 hours of being glutened, oh do my eyes itch! I hope you don't get that blessing, good luck, once your Gluten Free, your sanity will come back, you will feel like you have a life again, until then, good luck.

Julz Newbie
Julz
Posted
  • Author
Julz,

Congratulations on pharmacy school!! We definately need celiacs in that field.

I'm lucky that on the block where my flower shop is, are two restaurants that will make meals for me. At one I get a cheeseburger, no bun and fries. The other I can get Mexican food. If you can get a local restaurant on board with you it will help a lot.

That said You of course can take the obvious; fruits, nuts, trail mix. cheese slices, Hormel Naturals lunchmeat. Rice Chex, chips. Do you have access to a microwave? There are frozen dinners that are gluten-free. The taquitos in corn tortillas, popcorn.

Hope that helps,

Angie

Thanks Angie :) Hopefully I can do some in-depth research while I'm in school.. haha I will definitely keep everyone up to date with anything I find out! Thanks for the tips on the snacks. The only thing I'm worried about is the hormel lunchmeat. There is an ingredient in there that says its from seaweed. I thought I read somewhere to stay away from that when you have DH symptoms b/c it can be high in iodine. But I'm not sure about that. Have you heard that?

Thanks again to you and to everyone who replied!

Julz

ang1e0251 Contributor
ang1e0251
Posted
Thanks Angie :) Hopefully I can do some in-depth research while I'm in school.. haha I will definitely keep everyone up to date with anything I find out! Thanks for the tips on the snacks. The only thing I'm worried about is the hormel lunchmeat. There is an ingredient in there that says its from seaweed. I thought I read somewhere to stay away from that when you have DH symptoms b/c it can be high in iodine. But I'm not sure about that. Have you heard that?

Thanks again to you and to everyone who replied!

Julz

Julz,

I have to admit to knowing little about iodine. I do not have a problem with fish and I used to take kelp supplements that were beneficial to my heart "pounders". The store stopped carrying them & I haven't taken them since. .... but...I can't answer your question. It does seem like seeweed might have iodine.

Anyone out there with iodine knowledge?

Angie

Julz Newbie
Julz
Posted
  • Author

Hey everyone,

I was just wondering if anyone knew if Benadryl Dye free is gluten free? I have been taking hydroxyzine (prescription) but I ran out and really need itch relief! I have read on many sites about benadryl and the debate goes back and forth.

Thanks,

Julz

skluever Newbie
skluever
Posted

Has anyone tried to sweat it out. for almost the last month my boyfriend, everyday sits in the bathroom and turns the shower on hot. it fills the room with steam and he sweat an extreme amount. it burns and itches alot but we feel it gets the toxins "poison" out after he cant take it anymore he hops in the shower and washes the sweat off. one week the back of his hand was covered in DH and the next it was nearly gone. if anyone is willing to give this a try please get back to me and let me know if it helped or not.

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