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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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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

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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

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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

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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

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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

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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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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

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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.

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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

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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

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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

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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!

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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.

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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

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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

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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

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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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    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.