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Dh Is Driving Me Crazy... Help Please!
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My name is dakota, i am 20 years old and in the united states air force.

I started to get what seemed like a major skin inflation back in November. when i first saw my dr he thought it was scabies. He tried to treat me for that, didn't work. thought i just had an allergic reaction so put me on beneydryl, didnt help. the dr made me see a dermatologist. After a skin biopsy and more blood work he thought i had psoriasis. He put me through months of photo-therapy which cleared up a large portion of it but still was not helping around the elbows, knees, feet, hands, and butt. i finally saw a rhuematologist who said i possibly had an autoimmune problem. finally saw the GI. HE did a upper endoscopy. He failed to tell me to eat a slice of bread everyday for 7 days before and when the results came in he said it was clean, no signs of a problem. rescheduled the upper endoscopy for june 4th. ive been told there is a chance i could be allergic or intollerant of gluten so i quit eating it without the dr's say so. i quit itching for the most part except around the key areas previously mentioned. on a normal day i dont itch anywhere except the wrist, thighs, and butt. it is killing me and i need to know if anyone has any surefire ways to stop the itching. It has been so bad at points that i have seriously considered suicide at times. i know its not worth it which is whats stopping me from doing so. PLEASE HELP ME!!!!!

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It sounds like you might have DH, which is a version of coeliac disease.

There are no sure fire ways to stop the itching, but keeping the lesions moistened with any number of lotions and creams will help a lot. Others have suggested pain relieving lotions that may work especially well. (They will soon recommend some to you, I'm sure). But none will make the itching/burning disappear completely at once, I think.

But you should be confident that if you are able to eliminate gluten completely from your diet you WILL eventually be rid of this scourge. It may take weeks, or much longer, but the itch will get better if you get rid of the gluten.

I urge you to read through a lot of the older threads in this forum. There is a wealth of information there, including much that you will rarely hear from a physician.

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Well, it definitely sounds like you have a gluten rash, probably DH.

As far as the testing goes - DH people tend to test negative on endoscopies because the damage they are looking for tends to manifest itself on the skin. It is patchier and less prevalent in your intestines because it is amusing itself on your outside. Thrilling, huh?

Since you already went gluten-free you have more testing problems. You can't be accurately tested for celiac disease while gluten-free (serological or biopsy). It invalidates the results because the antibodies fall. Also, if they gave you steroids for the rash (lots of Derms do) that can invalidate testing.

Your best bet for an accurate dx is a biopsy by a qualified dermatologist of the skin rash. You need a derm who has dx'ed DH before. It is a very specific group of tests performed on a biopsy of your skin. This is the best info I have about testing http://m.arupconsult.com/Topic_DermHerpetiformis.html

As far as the itching - obviously going gluten-free and a receding rash is the best fix. I prefer Vanicream lotion, applied several times a day. I also slather on a bit of Vaseline sometimes to keep it lubricated since the scabs can be dry and thick. Ice packs help the itching. I don't use NSAIDs for pain, I use Tylenol since NSAIDs can spike DH. Some people with DH are iodine or salicylate sensitive. If your rash comes back inexplicably (you haven't eaten gluten) you should look into those foods as an aggravating factor.

Some people find itch relief from topicals like Orajel or other "pain relief" creams. I had a bit of luck using cromolyn mixed with Vanicream http://www.urticaria.thunderworksinc.com/pages/cromolyncream.htm.

I'm sorry you're having such a hard time. DH is a terribly itchy rash and can literally make you insane. And if the rash doesn't do it the doctors will. I also advise staying away from most processed foods right now (whether you are gluten-free or not). Most are high on the salicylate/MSG factor and that usually aggravates DH. I ate some highly processed gluten-free chips in the beginning and literally went psychodellic and immediately broke out.

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Just thought of something.

If you can get one of those doctors to prescribe a DH treatment that works (probably dapsone) - meaning gets rid of the rash - and you are able to go back on gluten (you don't have other reactions like D, migraines, neuro) you could stay on gluten long enough for testing (don't know how long you've been off, but they suggest 2-3 months on gluten before testing).

This isn't a permanent solution, but it will enable an endoscopy and blood work. Unfortunately, it disables a skin biopsy unless you come off the dapsone while on gluten to provoke a flare.

Just a thought.

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pricklypear you are always so thorough and helpful for these newcomers!!

My son and I are having a lot us success with heel balm. The brand I use is Australian: Eulactol

I haven't tried any of the other brands.

http://www.eulactol.com.au/products/heel-balm

The active ingredient is urea so it isn't the best smelling stuff and very sticky. Once it is on though it soaks right in and loses the scent. Urea is a "super" skin healer.

Do you know what the consequences (being in the military) will be if you are diagnosed with celiac or gluten intolerance? I was in the Australian navy and I just can't imagine them ever accommodating such a diet. With DH in particularly you need to be super strict in the kitchen/bathroom etc and needless to say anywhere, anytime.

I had to have the conversation with my new love today about kissing after he'd eaten glutens. I thought it would be awkward but he is a lovely, thoughtful man. There are many of these unexpected things that have arisen during my journey in the past year. I've been through what you are going through now. Very down - absolutely and thoroughly miserable. So many days of hiding inside, itching till I bled. Now on the uphill side and life is looking pretty good. Still have lesions and new outbreaks every day but far less and less intense itch, lots more healing than new ones. Yours too will continue to improve but you need to get *strict*.

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I second the recommendation to temporarily remove iodine from your diet. I got glutened two months ago, and because there's iodine in my thyroid medications, it's like a match was lit by the gluten....and the iodine is continuing to allow it to burn. I'm still breaking out daily with new blisters. It's pure hell! So, please, do try to remove the iodine--that should help. That's how I use to control the blisters before I knew I had gluten--removing the iodine stopped the blisters in their track.

One last thing: The military can discharge you for having celiac. I know someone who had his rash diagnosed as DH, and the doctor kindly didn't mention in on the forms that that meant he had celiac, because the doctor knew that he would then be discharged from service. He took Dapsone to control the symptoms so that his illness wasn't obvious.

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    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
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