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wera9666

By wera9666
in Dermatitis Herpetiformis

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wera9666 Newbie
wera9666
Posted

In May I was returning from a business trip in Bermuda (I know, pretty sweet) and noticed on the plane that my elbows had broken out with lots of what seemed like pimples. I work in lots of medical and research labs and figured that I just put my elbows in something nasty and was having a reaction. Well it didn't go away so I went to my general Dr and then to the derma Dr without any results. All the while the rash was popping up elsewhere; knees, belt buckle area, scalp, rear end, etc. Eventually my Dermatologist mentioned that it might be DH and did some sort of biopsy which came back negative. Then he said that we needed to do an immunofluorescence biopsy and blood tests but because he was showing zero sense of urgency I decided to skip the tests and just go gluten free and see what happens. I have been gluten free now for two weeks and while I think I have noticed improvement it is very little and I'm still getting new blisters. I'm a little frustrated because while I don't have a Dr diagnosis of DH my symptoms point strongly in that direction and I was hoping going gluten free cold turkey would prove this out. I'm interested to hear what other have experianced regarding detox time and what to expect.

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ChemistMama Contributor
ChemistMama
Posted

Unfortunately, it's different for everyone. I"ve read on this board that some people see relief in several days, but for me when I went gluten-free, my DH got much worse before it got better. It took me several months to see any improvement, and then I just gave up and went on Dapsone to get relief. Do a search on this board for 'iodine patch test', you may want to try it to see if you do have DH. Good luck!

momxyz Contributor
momxyz
Posted

two weeks may be a little early to see dramatic improvement. The fact that you're noticing some improvement is noteworthy; keep sticking with the diet!

For me the difference I noticed early on, was that a topical cream (I started out using 1% hydrocortisone) did help control the itching once I went gluten free. Prior to going gluten free creams and ointments provided very little relief. I also didn't instantly stop getting new blisters.

I did notice that I would get new blisters after an "itch attack" where I couldn't avoid scratching.

I followed the advice of another poster and stopped using the hydrocortisone after a while. This poster recommended Sarna lotion, whose active ingredient is pramoxamine. I used Gold Bond medicated cream, which has the same active ingredient. Either product might be helpful in controlling the itching and promote healing, while you continue on the gluten free diet.

I notice more improvement after a month of going gluten free. I'm at the 2 1/2 months point now and am very pleased with the healing. I still have spots that are not completely healed but almost all spots are brown now rather than angry red. It's been an exercise in patience.

Glamour Explorer
Glamour
Posted

I am in your boat and have been gluten free for a short time (less than 2 weeks). My rash got better and then it has flared up again.

Before I was diagnosed by Derm and Eczema, Psoriasis, possible scabies, stress, the usual. I refused to do oral prednisone after researching.

The cortisone creams, prescription and weaker OTC really thinned my skin, causing easy bleeding, easy bruising and atrophy. Be careful. Even though applied to specific locations the cortisone absorbtion becomes system wide.

I have been off of all steroid creams for about 2 months and am keeping topicals down to shea butter or coconut oil.

I think using steroids ONLY if going gluten free is your best chance of them working at all. More important keep skin clean, watch out for irritants, perfumes, soaps, cleaners , laundry detergents and chemicals, in food, meds, etc.

I am just trying to get things back down to simple diet, etc. so I can figure out what is causing this.

First chemical and gluten free. Then I will nix dairy (do very little).

momxyz Contributor
momxyz
Posted

I agree totally wih the non steroidal approach, accompanied with exquisite hygiene. But I found that I needed something to control the itchiness, to avoid further damage thru my scratching. And, scratching itself sometimes seemed to bring on new blisters. The preparations containing pramoxamine are non-steroidal and do effectively control itching. I was applying this twice a day for awhile, am now down to once a day and am feeling like I'm almost where I may not need it every day.

Glamour Explorer
Glamour
Posted
I agree totally wih the non steroidal approach, accompanied with exquisite hygiene. But I found that I needed something to control the itchiness, to avoid further damage thru my scratching. And, scratching itself sometimes seemed to bring on new blisters. The preparations containing pramoxamine are non-steroidal and do effectively control itching. I was applying this twice a day for awhile, am now down to once a day and am feeling like I'm almost where I may not need it every day.

I tried those anti itch products, as well as SARNA, gold bond, zinc creams, anibiotics, as a matter of fact I have about 50 different products, lotions to deal with this.

I might try that pramoxine chemical again. I think I react to lanolin, petroleum and many common ingredients in topical products. Right now I find a bath soak with baking soda and then coconut oil (organic unrefined) is the best . Aloe vera, calendula were OK.

I did like .5% kroger sensitive skin cortizone, and now I can't find it. But I was still scratching and then with the thinned skin caused by steroids.

I have read that colloidal silver spray might help

I am convinced that since none of these preparations work, diet and body chemistry is the culprit

ang1e0251 Contributor
ang1e0251
Posted

My healing from DH was slow but progressive. It took about 8 weeks for the lesions to clear up, a little longer for the discoloration. But, I didn't have the rash as long as you. Be patient, although with itching, patience is worn thin. Beware of trace gluten and sneaky gluten.

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