31 replies to this topic

[Jackson]

I'm new to posting on this forum but I have been on this site for the past year and finally come to the conclusion that I have DH and have had it since 2005. I to have this on my groin area and my perineal area. I felt that I should add my comments with others because DH does not always appear in a predictable way. I have been gluten free for 6 years and corn free since 2008. I can't seem to clear the DH though. It goes from bad to worse. Currently I'm doing minimal iodine exposure and am eating foods on the salicylate diet in the negligible and low categories. The rash seems to get worse. The first two weeks after starting this approach I felt greatly improved and then the rash flared even worse than before. I'm using a mixture of 50 percent zinc oxide and 50% sunflower oil to control the unbearable to some degree but the DH seems to keep spreading. I'm at a loss. Any suggestions?

[squirmingitch]

Are you absolutely positive you are not getting cc'd? DH is sensitive to the smallest amount of gluten.
Have you checked your shampoo/conditioner for gluten-free status?
Do you use any hand lotion or other products that you may get on your hands & then ingest when you eat something from your hands?
How long have you been using the zinc oxide? And where did you get the idea that zinc oxide & sunflower oil were the thing to do? When you say the dh is spreading; do you mean you just keep getting new lesions? Or do you mean spreading to more portions of your body?

I'm wanting to say it might be the zinc oxide. I can't tolerate the stuff & that was before I went gluten-free. Haven't tried it since. I only tried it b/c I wanted to use a sunscreen & all the "normal" sunscreens I was allergic to. The zinc oxide didn't seem to be much better for me.

[kareng]

I don't know a lot about DH but .... could it be something else? You have been gluten-free for many years, maybe its something else?

[eatmeat4good]

I tried zinc oxide and it did nothing for me either.
Try Benzocaine ointment over the counter...Walgreens makes one called Pain Relieving Ointment and it works temporarily for the burning stinging itching pain of DH.
Do you eat eggs or dairy? Both can be high in iodine.
Are you following the thyca.com low iodine diet to minimize iodine? I ask because they give a lot of information about where you could be getting iodine that you would never suspect. Such as canned goods. Canned goods have a lining that contains iodine. I knew at one point I was reacting to canned goods. At first I attributed it to the fruit then I realized green beans from a can did the same thing. Then I found out about iodine in the lining of cans and ditched the canned goods.

Do you live with gluten eater's or kiss a gluten eater? This includes humans and animals.
If you are still having active lesions after 6 years gluten free, I'd recommend getting a biopsy done to make sure it is DH and not something else. It doesn't sound like it has ever cleared. Have you ever been free of the rash since 2005?

Re-visit everything. Pots and pans...if you didn't change them, change them now. Clean the cupboards again, check personal products. Re-new the colander and the toaster.

Are you eating products that are certified gluten free? Some things are made on shared lines and that is not required to be disclosed. Only Certified is tested for gluten, so I would only use Certified gluten free anything at this point if I were still having DH.

Just throwing some ideas out there for you. Hope you feel better soon and thank you for sharing so others know how DH can present.

[mopsiecat]

I'm new to posting on this forum but I have been on this site for the past year and finally come to the conclusion that I have DH and have had it since 2005. I to have this on my groin area and my perineal area. I felt that I should add my comments with others because DH does not always appear in a predictable way. I have been gluten free for 6 years and corn free since 2008. I can't seem to clear the DH though. It goes from bad to worse. Currently I'm doing minimal iodine exposure and am eating foods on the salicylate diet in the negligible and low categories. The rash seems to get worse. The first two weeks after starting this approach I felt greatly improved and then the rash flared even worse than before. I'm using a mixture of 50 percent zinc oxide and 50% sunflower oil to control the unbearable to some degree but the DH seems to keep spreading. I'm at a loss. Any suggestions?

Anything greasy on my sores seems to prevent them from healing. Keeping them as clean and dry as possible does it for me, though that is a big challenge in the perineal area especially in summer!
As some one else mentioned, it flares up with the smallest amount of gluten.

[pricklypear1971]

I had to really baby my DH. Before I knew what it was I sprayed an antifungal on it because it seemed to help. I think it helped because it had a numbing agent and it made it feel dry. The numbing part was great, but the dry part wasn't...it ended up making it worse - more irritated.

My best luck was with Vanicream lotion as far as keeping the skin soft and stopping irritation from scabbing.

My DH was under my arms - pits and surrounding area (actually, my actual pits were unaffected - they were white bullseyes in the middle of the red rash). I did have terrible underarm b.o. from it since the scabs captured the stink and clogged up the pores...

I had a brief episode down my butt crack and that was about the time my derm put me on steroids and a wham-bam double antihistimine that was also an antipsychotic - which was pretty handy since I was quickly losing it as the rash grew and itched down my butt. Luckily, when I got off the steroid the rash didn't come back except under my arms...so I don't have any more advice about dealing with DH down yonder.

My advice, baby it with a moisturizing lotion. Ice it (sorry, I know that could be interesting). Try to keep it dry when the blisters pop by airing it out.

I assume a doctor has looked at this rash and excluded other dx? Can you get it biopsied? Can you try dapsone?

Also, it can take a while to drop iodine levels...and some people struggle with one particular iodine source (egg yolks and seaweed were bad for me). In the beginning weird stuff set me off, but I was also newly gluten-free.

[Jackson]

Thanks for all your input. This past Sunday I went to a celiac expo hoping there would be a vitamin, shampoo & soap company represented but there wasn't but the quality of gluten and corn free products was amazing. My wife and I cook everything from scratch so we can control the food content. My wife got a blood test at the expo so will see if she is developing a sensitivity to gluten. I do have a Dr appointment near the end of this month. Perhaps we can start some testing again. The last time I had testing done nothing could be found. I mirrored many of your experiences, the Dr's just don't know. The last guy I saw told me, after I told him I was pretty sure I have DH, that many people are sensitive to gluten and the he went to a web site and pulled up one of the pictures that shows an individual with the the "mosquito bites" all over his/her body a told me that this is what DH looks like. At this point I just left knowing that he hadn't a clue about celiacs or DH. Oh, the zinc combo was created to relieve the itch and dry the area from the blisters. For me it works pretty good but it is very messy. If I'm not mistaken, zinc is one of the ingredients in calamine lotion. Calamine lotion was what someone here said helped then so I just played around with the non harmful ingredients. Sorry for the long post but I am really getting discouraged. I an looking closer at cc, and shampoos etc. thanks for all your comments and this forum is a marvelous thing . Thanks, Jack

[squirmingitch]

Jack, I hope you can find the culprit. BTW, I use Suave Shampoo & conditioner & it's gluten free. Crest toothpastes are gluten-free. Do you have pets? Cats or dogs need to be eating gluten-free or you can get cc'd from them. The lick their bodies with their gluteny tongues & we pet them or we kiss them. How about your medications, have you checked them? Both OTC & prescription. Does your wife eat gluten? If so, does she brush her teeth before you guys kiss? Personal products, creams, lotions, powders that she uses topically & then you nuzzle or kiss her could gluten you. How about things you are eating? gluten-free flours & such --- are they all batch tested, certified gluten-free? Maybe you are a super sensitive. I'm just trying to give you some avenues to explore here.

And last but not least, some of the literature states that it can take up to 10 years for the antibodies to get out of your skin. I surely hope this is not your case; I really do! But it might be so if you can rule everything else out.

Keep us updated & I hope you begin healing permanently soon!

[pricklypear1971]

When you say minimal iodine are you using the thyca guidelines?

[pricklypear1971]

And I'll just have to trust you on the "drying out" thing. Because mine never benefitted from drying out, that just made the skin more irritated and painful. Especially moving my arms.

I struggled to keep my rash moisturized so it didn't crack and bleed. Only time I had to dry it was at night when the blisters popped, and I just used a towel packed under each arm. As soon as they drained I'd need to moisturize or it would feel like dried plaster and hurt like hell to move my arms.

[ravenwoodglass]

Yes.
It's often misdiagnosed as herpes, especially if a herpes test comes back positive.

If a herpes test comes back positive it is herpes. You can have both herpes and DH.

[frieze]

I had to really baby my DH. Before I knew what it was I sprayed an antifungal on it because it seemed to help. I think it helped because it had a numbing agent and it made it feel dry. The numbing part was great, but the dry part wasn't...it ended up making it worse - more irritated.

My best luck was with Vanicream lotion as far as keeping the skin soft and stopping irritation from scabbing.

My DH was under my arms - pits and surrounding area (actually, my actual pits were unaffected - they were white bullseyes in the middle of the red rash). I did have terrible underarm b.o. from it since the scabs captured the stink and clogged up the pores...

I had a brief episode down my butt crack and that was about the time my derm put me on steroids and a wham-bam double antihistimine that was also an antipsychotic - which was pretty handy since I was quickly losing it as the rash grew and itched down my butt. Luckily, when I got off the steroid the rash didn't come back except under my arms...so I don't have any more advice about dealing with DH down yonder.

My advice, baby it with a moisturizing lotion. Ice it (sorry, I know that could be interesting). Try to keep it dry when the blisters pop by airing it out.

I assume a doctor has looked at this rash and excluded other dx? Can you get it biopsied? Can you try dapsone?

Also, it can take a while to drop iodine levels...and some people struggle with one particular iodine source (egg yolks and seaweed were bad for me). In the beginning weird stuff set me off, but I was also newly gluten-free.

Was the "white, bullseye" area, where you put your antipersperant?

[pricklypear1971]

Was the "white, bullseye" area, where you put your antipersperant?

Yes, it was the "official pit area"...I put the deoderant there but it would smear outside the area.

The rash was slightly in the outer regions of the pits, but the center-most part of my arm pit was clear. The rash radiated out from that area. It was quite impressive.

[yolo]

Hi, I know this is a late response--but just saw the thread now.

I also have had intense itching, cracking, scaling skin and hives in the genital area including around the anus--and terrible flaky, scaling, crusty inside of my outer ears.

I used to get small pimples too as a young adult before I was mostly off all gluten--in these areas as well as my back, scalp, neck, and over my breasts. Awful! If I ingest gluten I start getting the pimples again.

The other stuff however which I will call psoriasis and hives, seems to be related to other additional food sensitivities. In me namely salicylates, amines and tannins. Being mostly off the heavy to medium and sometimes even low food chemicals like that, has greatly improved my condition.

Other things that have helped are taking bentonite clay regularly with psyllium husks. I always sprinkle the bentonite on the top of a large mug of water and let sit for at least 4 hours before stirring and drinking. In addition I take an equal amount of psyllium husks freshly mixed in another large mug of water. It absorbs toxic chemicals, heavy metals, and various bacteria and parasites and then carries them out of the body. Its great for better bowel movements too. Just make sure you take it at least 2 hours after eating anything and one hour before you ingest anything new besides water.

I also have found taking small amounts of barberry bark regularly also helps my liver and gall bladder which then in turn helps out my skin and lessens some of my food sensitivities by improving my intestinal health.

Just thought I'd give whomever a heads up in case they go looking for this kind of information.

[sisterlynr]

Just in case someone reads this "bumped to 2012" posting. . . . My GYN took a biopsy and it was negative for any disease, she just told me didn't know what the problem was. . . sound familiar?

Showering was horrible and I used lots of Vaseline but it didn't help the itch. I used lots of products but eventually tried Prep H - strongest strength and it did provide relief. FYI Thankfully that area hasn't been affected for several months!