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wera9666

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wera9666 Newbie

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

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

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

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

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
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

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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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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