Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help


Julz

Recommended Posts

Julz Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



J in Cincy Newbie

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

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
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

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

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
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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



flourgirl Apprentice

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

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
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

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

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

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
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,

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
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

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

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,951
    • Most Online (within 30 mins)
      7,748

    Maeda
    Newest Member
    Maeda
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jodi Lee K
      Hi. I was wondering if many people have had oral health issues pop up after going gluten free from celiac disease?    I just graduated in December and am now a RDH. But I’ve had celiac going 3 years and when I have the best home care I’ve ever had, now my oral health is plummeting. Minimal calculus…but new decay, plaque, and overall inflammation. 
    • Scott Adams
      It’s frustrating how little awareness there is around celiac complications, even among doctors. Your discovery about histamine intolerance makes so much sense. It’s interesting how interconnected these reactions can be (heart arrhythmias from food? No one warns you about that). It’s great that antihistamines helped, and the ranitidine connection is a huge clue. Have you looked into low-histamine diets or DAO enzyme supplements? Some celiacs find relief there, especially with reflux and heart palpitations. And yeah, the ‘hidden gluten’ struggle is real—even after years of being careful, cross-contamination or sneaky ingredients (like maize starch or oats) can keep the inflammation cycle going. If you’re open to it, a functional medicine doctor (or even a telehealth specialist in celiac/histamine issues) might offer more tailored help than the NHS. Keep us posted!
    • Idnam
      Yes! pounding heart. I was getting a kind of allergic reaction to things that had been fine yesterday (I am totally compliant) banana cheese even lettuce, and I get heart ahrythma ie my heart beats really fast and misses some beats, I have had an ECG twice, but this is after it has gone off and calmed down in a few days. It was v scary. I took an antihistamine tab and it went off. So, time to go further down the rabbit hole, Docs in UK know no thing about Celiac I was told to join Celiac.org and ask them! I have, actually been mostly gluten-free for 28 yrs. Although I was not diagnosed until  2 yrs ago as I didn't eat gluten it never showed up in the endoscopies I had I been "clean" since then. but that's when all my problems started, maize starch, oats, real bad Heartburn for which the only remedy was Gaviscon. The only symptom  I had had for 12 years and 3 endoscopies was Acid Reflux, pain upper left chest, I made a couple of visits to A&E. During a time when I had found a bread I really liked that didn't affect me, I consulted my Doctor an told him I had no energy at all and I really felt there was something wrong with me. I had a full blood count and they picked up (finally because I had been eating gluten) that I had Celiac disease. Now two years later I'm no better really, still get Acid Reflux and now this heart arythma, I started a google hunt (oh thank god for google). Could I find an anti histamine that was not pharma? I discovered during that search that there was a reason why Ranitidine an H2  antagonist was the only medication that had helped me,  worked for me, it's because it neutralises Histamine! Apparently Celiacs have too much Histamine in their bodies, this level of H will cause the body to release more acid the help the body digest food.....hence Acid Reflux, caused probably originally by Histamine intolerance. So here's another food list a list of things I should not eat! Hey ho!
    • Scott Adams
      I think it couldn't hurt for you to be sure that your diet is 100% gluten-free with zero cross-contamination for a couple of months to see if that helps. If you're eating out you're likely getting some level of gluten in your diet. It's hard, but at least this would help you determine if gluten is the culprit.
    • CarolTN
      Thank you to Trents, Scott, Christina and Bohanley for your replies!  I have been gluten-free for about 13 years and mostly dairy-free during that time. I haven't been diagnosed as Celiac. When I did the test I hadn't eaten gluten for two years and the nurse told me the test wouldn't be accurate. Anyway, once in a blue moon I'll get tempted and take a tiny bite of something. If I do this two or three times close together, I'll get nauseated and if I don't throw up right away to stop it, will spend about 8 hours throwing up off and on before it's over.  I've been using Ketaconazole shampoo for about two years. I like T-Gel, but the prescription shampoo is the only thing right now that calms my scalp down. Many times, my scalp looks pink or red. It just feels very inflamed. I wash my hair every day and use Ketaconazole pretty much every day. I've noticed that a hot blow dryer seems to calm things down too.  My dermatologist has guessed (his term) at seborrheic dermatitis. I really need more help than I'm getting.  Thank you to everybody! Carolyn 
×
×
  • Create New...