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This Is The Worst!

Ryniev

By Ryniev
in Dermatitis Herpetiformis

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Ryniev Apprentice
Ryniev
Posted

I thought I had celiac disease several year ago because of severe IBS, fatigue and joint pain. My doctor at the time thought I was crazy and told me I needed to take anti-depressents for the IBS and told me it would "calm me down" I finally convince her to give me a blood test and she condescendingly did so even though "I had no symptoms" because having diarhea and never ending gas everytime you ate aren't "symptoms". It came back negative and she told me to limit wheat for the IBS. I went gluten-free for about 6 months never felt better but stupid me, I went through a divorce and started eating whatever again.

Was okay for a while then the IBS hit and this time with stomach pains and constipation. This past July I started to get strange "bug bites" all up and down my arms and legs, my upperback, kneecaps, chest, then the feet OMG! The feet. They's start out red, then they'd hurt and burn so bad I'd almost cry getting in the shower. I'd go to the pool with my daughter and get in the water and the burn would make so nauseated I'd get goosebumps. I felt like it was coming from inside my body.

Then fall hit and I was still getting "bug bites" even though there were no bugs. anywhere. It was then I started to realize they weren't bug bites so I went to the dermatologist. My body now a mass of purple scar tissue with fresh bumps over. Exhausted from not sleeping for more than two hours at a time and waking up with blood on my sheets. She put me on prednisone and gave me a topical steroid and a sedating antihistimine to clear up the hives and help me sleep. Told me it was hives probably due to stress. The meds did nothing but make me tired but I'd still wake up. all night. Next stop, primary care doctor who gave me another course of prednisone and anti-anxiety meds to help me sleep.

Finally today I was a picture of a DH rash and it looked just like what I had (after 7 months of this nonsense I really didn't think it was hives anyway). I remembered an old friend who I haven't seen in 4 years told me he had a rash that got him diagnosed with Celiac so I called him and he asked me to come over and let him see. I showed him my arms, legs, back and feet and he said it looked like his rash. His wife came down and agreed. Friend also told me when he eliminated gluten the rash went away but took several months. My dermatologist told me he would do a biopsy of my skin so I'm going to call tommorrow.

It's weird but I guess I got so used to living with the IBS that it didn't really phase me! I'm telling you that I would only eat bananas for the rest of my life it would cure this itch! I've had eczema most of my life off and on but at least then I could put some cream on it for relief. This thing is relentless. At this point I'm hoping it really is DH because I've run out of options.

If you've bothered to read this much, thanks. I guess I'm a little mad at myself because maybe, just maybe if I had stayed gluten-free, I wouldn't dealing with this. Who knows? Not looking for sympathy, just understanding.

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pricklypear1971 Community Regular
pricklypear1971
Posted

I hear ya. I wasn't dx'ed with IBS and told to avoid gluten for that, but I do have what is apparently DH and it is an indescribable pain in the butt.

Just a heads up, prednisone can interfere with dx'ing Celiac. I have no idea if its true with DH.

They put me on steroid shots, pills, creams, class 1&2 antihistimines - you name it. I wasn't tested for DH (derm didn't think it was DH til I told him I responded to gluten-free diet), but there's a huge chance my blood work would have been negative because of the steroids.

And btw steroid creams did help to dampen by DH, because when I got off them it changed completely - bigger, redder, and made me ill. I am sensitive to iodine so once I figured that out and cut it for 2 weeks, then reintroduced slowly (after 2 months gluten-free) I was able to keep my DH under control.

Good luck to you!

squirmingitch Veteran
squirmingitch
Posted

Well you came to the right place for understanding! You know what to do though. Gluten free is the key. Biopsy or no biopsy or neg. biopsy. You have celiac you need to be gluten free. Read the posts on this dh forum. You're going to have to eliminate gluten from your topical products as well as your food. Make sure meds & OTC stuff contains no gluten. You may need to go low iodine for a while to help it calm down. Google thyca.com for the low iodine info.

For now shower with the coolest water you can stand. Witch hazel helps after & cools the spots. Moisturizing helps. Vanicream -- gluten free.

We all know the sleepless nights & the insane itch that makes you want to peel your skin right off your body.

Remember that the dh biopsies return a 37% false negative & they have to be done perfectly. It's up to you about getting it done but as you've already experienced this stuff is a "B" to get medical diagnosis on. Celiac is bad enough but dh is worse.

I would say welcome to the forum but since dh is a curse maybe I should say unwelcome to the forum.biggrin.gif

ciamarie Rookie
ciamarie
Posted

I hope you can get to the dermatologist soon! In the meantime, in another thread squirmingitch mentioned using Orajel to stop the itch. I also found that some lotion with tea tree oil helped stop the itch and add some moisture, long enough for me to sleep. Keep us posted.

Avalon451 Apprentice
Avalon451
Posted

Ugh, this sounds so frustrating! Doctors can be so clueless. It sure does sound like DH. be sure that your dermatologist knows that for DH you need to take 2 samples, one right on a FRESH new lesion, and one right next to it, on clear skin, like 1/8 inch away, for the result to be accurate. My daughter's first biopsy was directly on an older lesion, and they couldn't get any result from it.

If it does turn out to be DH, know that for some people, iodine can really make it worse. You might want to eliminate idodine when you go gluten-free (google the thyca diet for thyroid, it is low-iodine), at least until things settle down. The other thing is that some people take the drug Dapsone for fast relief, for the first few months, until the gluten-free diet kicks in. It's a serious drug, though, and always causes anemia to some extent or another; so they would test your blood to make sure you can take it, and then they start off with a low dose and have to do frequent blood draws to make sure it's not dangerously zapping your iron levels. However it's apparently pretty effective. They used to diagnose DH simply by whether or not a patient responded quickly to Dapsone.

Sure hope you get some relief soon!

squirmingitch Veteran
squirmingitch
Posted

Thanks ciamarie for remembering about the Orajel. I can't believe I forgot to mention it! It really, really does work! I might not slather it on very large areas such as an entire leg but I do use it on spots. And it certainly help with getting sleep!

Ryniev Apprentice
Ryniev
Posted
  • Author

Thanks everyone who responded! I'm going to go buy some Orajel after work and try it tonight. Hopefully it works because last night at 2 am I was contemplating having both of my feet amputated. :D Probably not really funny but I've been trying to keep my sense of humor about the whole thing to keep from going insane.

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crab Newbie
crab
Posted

You might try some calamine lotion, I have had some decent results and its safe unlike using the steroids my derm told me.

Roda Rising Star
Roda
Posted

You may want to make sure the dermatologist knows how to properly biopsy for DH. I don't have it, but from what I understand they need to biopsy the clear skin next to the lesion and not the lesion itself. I think the antibodies they test for are in the skin adjacent to the DH lesions. There are others on here that know more about it.

https://www.celiac.com/articles/176/1/Dermatitis-Herpetiformis-Summary/Page1.html

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eatmeat4good Enthusiast
eatmeat4good
Posted

Walgreens brand of Pain Relieving Ointment is benzocaine and works great to numb the pain and itching.

Just another option.

squirmingitch Veteran
squirmingitch
Posted

eatmeat4good, I checked online for the Walgreen's pain relieving ointment & they didn't have it. I don't have a Walgreen's very near me so I was going to order it online. When was the last time you bought it?

cahill Collaborator
cahill
Posted

Be watchful of how your rash reacts or does not react to iodine . Seafood,ice cream ,milk, vitamins ,eggs (anything with any amount of iodine )ect.... can have an effect on DH.

Ryniev Apprentice
Ryniev
Posted
  • Author

Thanks everyone for all the tips and advice. I tried the orajel for a couple of nights and it helped. It's been less than a week and I know I have to be patient but I swear, I'm starting to feel a little less itchy. Maybe it's pyschological but my feet look like they are starting to heal just a little bit and I shaved my legs the other day without wanting to cry, so that's good.

I hope I don't have to go on a low iodine diet though. I imagine it's everywhere since they iodize salt. Hope everyone is having a wonderful weekend. :)

squirmingitch Veteran
squirmingitch
Posted

Let's hope you keep getting better! If you want to hasten it along though you may consider the low iodine & see what it does for you. I have found that it begins making my dh better in 3-4 days. Yes, it's a hassle but it's better than itching like a demon & the lesions begin to heal faster also. You can try it just for say 1 week to get you down the road so to speak.

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