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Possible DH - It is driving me crazy

Metoo

By Metoo
in Dermatitis Herpetiformis

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Metoo Enthusiast
Metoo
Posted

I was gluten free for 5 years....because of a rash on my hand, at the time I could get no doctor to listen to me after months, and a couple of cousins who could no longer consume gluten,  I went gluten free.  However the past year...I had turned into gluten light...I wasn't avoiding cross contamination anymore, or communion. 

In September....I broke out in an awful bumpy red rash all over my elbows, back of my legs, back of my neck.  The dermatologist did a biopsy, which turned up negative....however I was not eating much gluten, certainly not enough for a gluten challenge.  The dermatologist seemed confused told me not to eat gluten if that helps, that it clinically looks like DH but was confused by the biopsy. 

I went seriously Gluten free in October.  I was healing it seemed to be all calming, then about 2 weeks ago I was glutened. 

Now..the rash is out of control, the very next day it flared up.  I have it now all over my chest and seems to be spreading up my neck.  Its intensely INTENSELY itchy, so much I scratch it and it bleeds, I wake up in the night scratching it, it hurts/burns it itches so much.    The fact that I am 2 weeks out and its still morphing has me worried.

I have a dermatologist appointment tomorrow. 

Has anyone gone on dapsone for a very short period?  Or found another topical medicine that works? 

If nothing else I guess I am hoping for a skin cortisone shot. 

I am beginning to live in fear of food.  ugh. 

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squirmingitch Veteran
squirmingitch
Posted

Nooooooooooooo on the cortisone shot!!!! Oral steroids or steroid shots will work BUT when the steroids are done there is a backlash of the rash that will make you wish you had never been born!!!! Trust me, been there, done that!

Dapsone has a lot of side effects. Read up on it before you jump in the arena. Many here have tried it and the majority had side effects & had to quit it however some have done well on it.

My dermatologist prescribed Fluocinonide Cream (or ointment) 0.05%. It really helps!

Barbie Wickham Explorer
Barbie Wickham
Posted

MeToo & Squimingitch, I too had many biopsies & cultures that came back negative which I now know is because they were not performed properly. I wholeheartedly agree on NO to the cortisone shots, I had two big loads, a week apart, and initially my rash started to get better, but, within 2 weeks, it came back with a vengeance and a life of its own. I then went on a 6 month treatment of oral prednisone (60 MGs a day) and it did nothing for the rash, only caused me more side effects and was horrible to taper off of it. I would avoid steroids at all costs if you can. Even the topical cortisone  creams. The Dapsone has been a wonder drug for me. I’m aware of all it’s side effects and do hope to get off it soon. I started at 50mg a day and 3 weeks later dropped to 25 mg a day. I’ve tried completely stopping it twice, but within 2-3 days the Rash returns and I cannot handle the pain and itch (after feeling such relief!) that I will stay with it a few more months. And of course, I’m gluten free for life. These pics were from my all time worst, probably a week before I was dx’ed by our very caring family Doctor, (on his own time over the weekend)  - I then had a Gluten blood panel test and a proper skin biopsy which both confirmed his diagnosis  - so much for the dozens of “specialists” I saw & spent so much money on, all the time for light therapy 4x a week, the many medications for misdiagnosed diseases, Scabies, excema, herpes, psoriasis, spider bites, impetigo and several other “guesses” or even the “Sorry, I just don’t knows!” 

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artistsl Enthusiast
artistsl
Posted
2 hours ago, squirmingitch said:

Nooooooooooooo on the cortisone shot!!!! Oral steroids or steroid shots will work BUT when the steroids are done there is a backlash of the rash that will make you wish you had never been born!!!! Trust me, been there, done that!

Dapsone has a lot of side effects. Read up on it before you jump in the arena. Many here have tried it and the majority had side effects & had to quit it however some have done well on it.

My dermatologist prescribed Fluocinonide Cream (or ointment) 0.05%. It really helps!

I never knew steroids made it worse. Thank you for posting this. I too have the rash on my knuckles, but it's undiagnosed. The allergist prescribed steroid cream and it only seemed to make it worse so I stopped using the prescription. My intent is to do an eight week gluten challenge after the holidays, but after reading this original post I'm fearful that my rash will spread. Right now it's contained to my knuckles not to mention the other symptoms like throbbing joint pain, dizziness, fog, fatigue. The last time I was glutened I felt like I wanted to vomit, which I had never experienced before. Can symptoms worsen or spread each time you're exposed? Seriously hesitating to do this for eight weeks after reading this thread.

squirmingitch Veteran
squirmingitch
Posted

I've never heard anyone say that topical steroids make the rash worse but it's a different story with oral steroids or steroid shots.

Glutenings can have different symptoms & severity. We're all individuals but yes, as a general rule, reactions get stronger the longer you are strict gluten free.

Metoo Enthusiast
Metoo
Posted
  • Author

okay.....this answered a lot of my questions!  I will try to avoid the steroid shot.  It is seriously wearing me down.  its like I can't' get away from the pain / itching.

The other question I had was....the reaction seems to be getting worse...the more I avoid gluten.  I was going to ask the derm today if that was true or not.  I mean this break out was way worse than last one. 

It calmed down a little today, so there is some relief!   I will see if I can post a photo on here of it, its not as red today. 

Metoo Enthusiast
Metoo
Posted
  • Author

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squirmingitch Veteran
squirmingitch
Posted

You have to understand that the antibodies have been deposited under the skin. You won't be free of the rash until all the antibodies are gone from under your skin. That can take weeks, months or years. There is no one answer for everyone. DH is like the bastard stepchild of celiac as far as research goes. Celiac has not had enough research & dh has gotten far, far less than celiac in general. I don't want to discourage you but I have been on this road for 6 years now. My rash has slowly ramped down with each passing year. From what people on this site have reported, my case is the minority. I just want you to know. 

The dh rash is extremely sensitive to the tiniest amount of gluten, the tiniest amount! I tell people with dh that they are playing with fire if they eat out. You really can't take any chances. 

The dh rash can & does come & go seemingly at will. It can present whether or not you are eating gluten. It can & will present after you're gluten free. What exactly spurs it to flare? Any number of factors and few that are medically confirmed but those of us with the rash can confirm. Stress plays a part. It is medically known iodine intake can be a factor as well as NSAID's. Maybe illness. Heat & humidity, sweat. 

You will think you have it all figured out & then BOOM! suddenly it turns the tables on you & you realize you didn't have it all figured out. Trying to predict this stuff will drive you absolutely bonkers!!!! Save yourself the grief & don't try to predict. Human nature says you will try to predict. Ah well, that is human nature after all.

I would advise staying away from oats, even purity protocol oats. Research says 10% of celiacs react to even those purity protocol oats and most who have come on this site with dh, report they can't eat oats at all.

Victoria1234 Experienced
Victoria1234
Posted
14 hours ago, squirmingitch said:

The dh rash is extremely sensitive to the tiniest amount of gluten, the tiniest amount!

Yes. I would get the ITCH back, not the rash part, when I ate gluten-free cookies or crackers!

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