Hello All, New To Dh / Celiac Here . . .

[weaselfish]

Just found this site. First off, I'd like to thank all who've contributed to our " self-healing database " !!! I too shall contribute with honesty. I'm a 53 year old male and just determined that I have Dermatitis Herpetiformis as well as Celiac disease. Folks, I've got DH real bad . . . Don't have the GI tract symptoms so much, but DH is kicking me tail. From ankles to knees, from knees to hips on the outside of thighs, upper buttocks to middle of back, and from back of hands / wrists to armpits. My God, never experienced anything like this before. I've had boils, HSV1, tonsillitis, etc, but this takes the cake. The itch is something I've never experienced before. Insane . . .

As for the insane itch, I'm using a 1% Hydrocortisone cream currently. Healing is a prolonged affair. I'm down to rice and veggies only in diet trying to heal. Not a pleasant affair.

So, I declare myself to be in our fight to find a path to healing.

Peace and love to all,

weaselfish

[weaselfish]

A few more things. I've had lesions on my ear lobes and base of neck too. I'm 9 months into this hell as I type. Now here's what I'm interested in: Smart Meters. I have one on the wall just outside where I sit here at my computer. Has anyone else suspected a link between Smart Meters and Dermatitis Herpetiformis or Smart Meters being a trigger ???

Thanks in advance,

WF

[eatmeat4good]

You need to add meat to your diet to be able to heal. Protein is very important to healing DH. It was for me anyway. It took me a full year to get the lesions under control. You must limit your iodine intake by using a diet like the thyca.com site advises in their low iodine cookbook. Dairy and eggs make my DH go absolutely mad. Both must be high in iodine. Every time I have tried them, I get sores back. DH is very sensitive to gluten, even traces will make your antibodies in the skin stay active. Ice helps some but nothing will heal you except strict gluten free and low iodine. It's miserable I know. I have it on my face and it's been active 7 years. Just now getting down to the last healing of it. But any mistake will cause weeks of more DH hell. Hang in there. Sorry I don't know what a smart meter is but DH is hereditary and it takes a ridiculously long time for some of us to heal. I hope you can find relief. Topical lidocaine helps some or Benzocaine-I use Walgreens brand of Pain Relieving Ointment. It helps temporarily numb the stinging. Wish you quick healing.

[weaselfish]

Thanks eatmeat4good for your input. After watching Food,INC it's very hard for me to consume meat and I can't afford to purchase " free range " beef or game. However, I will keep it in mind. What I'm trying to do is go " bare bones " with my diet to purge, then once I have a good bit of healing under my belt, add gluten-free items to see what happens. I think my body is still purging . . . Anyone know how long the Celiac body takes to purge gluten ?

I've encountered the iodine issue with DH via my research and will steer clear. I too am sorry for your facial condition but since I've endured HSV 1 ( oral only ) since my late teens ( I'm now 53 ) I can empathize with your plight. Sucks to put it mildly . . .

I expect at least a 6 month to 1 year plus battle to get this under control. If I come across anything new in the way of treating this maddening affliction I will post my results.

Thanks again and I wish you the best of luck in dealing with your DH / Celiac condition,

WF

[squirmingitch]

I've never been anywhere near a Smart Meter & I went through the same hell as everyone else here. for those who don't know what a Smart Meter is, It's a new fangled electric meter being installed here in the U.S. which they will be able to read remotely. No more meter readers coming to your house.

Weaselfish, I feel for you. Been there, done that. The only thing that helped me at that point was Witch Hazel -- no miracle cure but helps for a bit.

Gluten free, low iodine, eat protien like eatmeat4good says.

Hang tough. There was a point where I swore I was going to take a fillet knife to my skin because that pain would surely be better than the effing, incessant itching!

[weaselfish]

Thanks for your input squirmingitch. Lots of talk about Smart Meters and since I can't verify any instance of DH in my family tree, it came to mind. I'll keep Witch Hazel in mind too. Tried rubbing alcohol, hydrogen peroxide, Calamine lotion, etc to no ultimate avail. Even thought at first it was Scabies and did that treatment to no avail. However, I now know what's going on with me. I'm hangin' in, got no choice, and I well know what you mean regarding being tempted by the fillet knife . . . Oh, I also made the mistake of using hot water . . . DEFINITE NO-NO. Relief does result but I always came out worse on the other side.

An open question: How about body soap ? Anyone use Pine Tar soap ? And what about laundry soap ? Make any difference ???

Thanks again squirmingitch and all others here.

Peace and healing to us all,

WF

[squirmingitch]

Oh, & get rid of anything topical that has gluten in it. Shampoo, moisturizers, after shave,soaps, lip balms, all of it. Use only gluten free external products. Then check toothpaste, mouthwash, candies, breath mints, cough drops. Check meds & vitamins for gluten.

Pets? Feed them gluten free food.

Watch for cross contamination. I don't touch any processed foods which aren't made in a gluten free facility. IE: Rice Chex cereal -- made in the same place they make all their other cereals --- flour gets around -- period.

Also, most people with dh don't tend to get the GI symptoms so much as celiacs without dh.

[itchy]

As you've already figured, weaselfish, results vary.

It has taken me 2 and a half years to get to the point I am now, where I have no bad lesions and just a half dozen healing sores. One would think these would heal in a few days, but no, it's taking weeks.

Occasional mild relapses suggest I'm still getting gluten somehow. Or maybe not.

I have never been able to detect any effect from iodine, or even from gluten externally, but I seem to be very sensitive to ingested gluten.

The general principle that seems to most useful for me is to avoid manufactured products that aren't explicitly labelled gluten free. And since I can't afford most gluten free products, that means eating natural foods.

[Di2011]

Don't forget your laundry detergent too. I ditched laundry powders (for liquid) years ago not realising at the time it was probably bulked with gluten.

Let us know how you are doing the next few months. It can be very frustrating .. and long. So stick with the diet etc, the stricter the better.

[weaselfish]

Oh, & get rid of anything topical that has gluten in it. Shampoo, moisturizers, after shave,soaps, lip balms, all of it. Use only gluten free external products. Then check toothpaste, mouthwash, candies, breath mints, cough drops. Check meds & vitamins for gluten.

Pets? Feed them gluten free food.

Watch for cross contamination. I don't touch any processed foods which aren't made in a gluten free facility. IE: Rice Chex cereal -- made in the same place they make all their other cereals --- flour gets around -- period.

Also, most people with dh don't tend to get the GI symptoms so much as celiacs without dh.

Thanks squirmingitch, I'm on it Trust NOTHING but what your body tells you !!! So, for me, it's: Gluten, gluten everywhere . . . But, so is Fukushima, yet still I seem care . . .

Peace and healing,

WF

[weaselfish]

As you've already figured, weaselfish, results vary.

It has taken me 2 and a half years to get to the point I am now, where I have no bad lesions and just a half dozen healing sores. One would think these would heal in a few days, but no, it's taking weeks.

Occasional mild relapses suggest I'm still getting gluten somehow. Or maybe not.

I have never been able to detect any effect from iodine, or even from gluten externally, but I seem to be very sensitive to ingested gluten.

The general principle that seems to most useful for me is to avoid manufactured products that aren't explicitly labelled gluten free. And since I can't afford most gluten free products, that means eating natural foods.

Hey itchy, Me thinks I'm on a similar path as you. I much appreciate your experience shared. Personally I'm going to test EVERYTHING. I know how to go about it as I determined WHAT triggers my HSV1 many years ago. Yes, doctors couldn't tell me, but guess what ??? I know me better than they do, and so do ALL of you !!!

I believe we all have similarities, but differences as well. It appears to me that we can learn from both via sharing IF we use our intellect and remain open to contemplation.

Thanks again and Peace & Healing,

WF

[weaselfish]

Don't forget your laundry detergent too. I ditched laundry powders (for liquid) years ago not realising at the time it was probably bulked with gluten.

Let us know how you are doing the next few months. It can be very frustrating .. and long. So stick with the diet etc, the stricter the better.

Hi diandliam, Nope, I won't !!! Currently I'm not changing my soap as a " control factor ". I am now an active member of this Community and indeed will regularly post. Yup, tight on the diet for now, then when I'm well on the road to healing, THEN I can " add / test " substances.

Peace & Healing to you and all yours,

WF

[squirmingitch]

Also weaselfish, another member (pricklypear) told me about Vanicream moisturizer & also Cromolyn cream made with the Vanicream.

Open Original Shared Link

I put it in the fridge & it cools as it goes on. No script needed. Available at your drugstore.

At your stage though I would shower with the coolest water I could stand & then standing in the shower just take the bottle of witch hazel & pour it over my entire body. It's cheap. Get lots of bottles. Plus witch hazel is an antiseptic as well as calming irritation. I used it on a fire ant bite the other day & WOW! it worked like a miracle. Just soaked a pad & held it on the bite for about 3 minutes & that's the last I knew of the bite.

Oh, check your deodorant too for gluten. With dh you have to be wary of anything that goes on your skin. Vitamin E made from wheat is a no-no. Vit. E gets absorbed into the skin & if it was made from wheat it will make you break out.

Sleep with it as cool as you comfortably can. Heat seems to make the itch worse & we all know night time is horror time.

You can also try antihistamines as they will help with the itch but they won't make the rash go away if it is dh. I used Benadryl but I don't really like meds so it's a last resort for me.

For body cleansing I use something called Jumping Jojoba Sudsy Scrub from a company called Monkey Boy Products. It's supposed to be a facial scrub but I've found personally that it is the least drying thing I can use for cleansing so I use it for my whole body. Only takes a very small amt.

Once you get to the point where you don't have lesions over large portions of your body you can try Orajel --- see the thread entitled, "It stops the itch dead in it's tracks". It's been working great for me but I wouldn't put it on as much of your body as you have the rash on right now.

[dh mom]

Hi WF, I am sorry for your itch. At least you have a diagnosis. Our son has DH. Diagnosed when he was 18. had it everywhere and kept being treated for skin staff infection. legs, buttocks, head, neck, face,arms chest, back etc. He was put on Dapsone which apparently works for many people. His liver started reacting to that, so the docs then put him on steroids, colchisine(cancer drug), and finally, we found a doc who took time to find a great drug - sulfapyridine.

The drug is put out by jacobus pharmacueticals in nj. It is not available by script. it is put out there as a trial drug. BUT, I called and spoke to the doc in charge of the drug, and it is actually an old-school drug, widely used in the U.K. but so few folks use it in this country (most use dapsone) that it is cheaper for them just to run it as a trial drug and give it away, than to bring it back to market. If you call Jacobus Pharm, they will put you right thru to the doc running the program so you can ask questions. Your doc needs to sign you up for this drug, then the drug is shipped to your doc - free. it clears the rash in 2 days. gone. Our son used this for nine months until all of the gluten damage was repaired. Very occasionally, he will take one pill now and agian if he accidently got into gluten. This drug had no side effects with him and frankly, made life tolerable. You need to be gluten-free and it will take probably a year I would guess based on what you describe. Tylenol and many other meds have gluten. We found that the high end brand names tend to be gluten free - helmans, McCormack spices, Heinz, prego, classico etc. Good luck

[weaselfish]

Hi WF, I am sorry for your itch. At least you have a diagnosis. Our son has DH. Diagnosed when he was 18. had it everywhere and kept being treated for skin staff infection. legs, buttocks, head, neck, face,arms chest, back etc. He was put on Dapsone which apparently works for many people. His liver started reacting to that, so the docs then put him on steroids, colchisine(cancer drug), and finally, we found a doc who took time to find a great drug - sulfapyridine.

The drug is put out by jacobus pharmacueticals in nj. It is not available by script. it is put out there as a trial drug. BUT, I called and spoke to the doc in charge of the drug, and it is actually an old-school drug, widely used in the U.K. but so few folks use it in this country (most use dapsone) that it is cheaper for them just to run it as a trial drug and give it away, than to bring it back to market. If you call Jacobus Pharm, they will put you right thru to the doc running the program so you can ask questions. Your doc needs to sign you up for this drug, then the drug is shipped to your doc - free. it clears the rash in 2 days. gone. Our son used this for nine months until all of the gluten damage was repaired. Very occasionally, he will take one pill now and agian if he accidently got into gluten. This drug had no side effects with him and frankly, made life tolerable. You need to be gluten-free and it will take probably a year I would guess based on what you describe. Tylenol and many other meds have gluten. We found that the high end brand names tend to be gluten free - helmans, McCormack spices, Heinz, prego, classico etc. Good luck

Hello dh mom,

Thanks so much for your concern and I too am sorry for your sons affliction. Must be really tough to deal with as a young adult. I very much appreciate you sharing your information on sulfapyridine !!! Since I haven't had a regular physician for over 25 years and no health insurance in about 12 years, it would be difficult for me to locate a doctor who would work with me on it.

However, I've been ( to the best of my knowledge ) gluten-free for just over 2 weeks. Currently the lesion itch is nothing compared to what it was, say 3 weeks ago, and I haven't had any new lesions in several days. I do experience " dry skin " itch as part of the lesion healing process but control it with over-the-counter Hydrocortisone cream ( initiated on my own ) and Witch Hazel ( as has been suggested here ). I'm also using Vanicream ( another tip I found here ) to moisturize with great success.

And although healing is very slow, I now have a positive outlook even though it may well take the better part of a year or more to get completely healed ( lesion wise ), and get this under relative control. I'm aware there is no cure for Celiac and am fine with my eating lifestyle change. My future wife has been the best helping with research and supporting me. In that respect I'm extremely fortunate. She and I carefully scrutinize ALL potential commercial food products to keep me gluten-free. Thanks for the " brand name " tip's !!! I can't take Tylenol or Advill, etc, so rely on good old fashioned aspirin when, and only when, absolutely needed. I possess a high pain threshold, but the DH itch was the worst I've ever experienced. Yup, Helmans ( a.k.a. Best Foods ) is gluten free as well as Heinz. Haven't checked out the other manufactures you mentioned but definitely will.

Thanks again so much. I will keep Sulfapyridine in mind and I hope your information will be of value to others. I give my best to your son.

Always take the best of care,

WF