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Dh With Dark Skin

clydeshannon5

By clydeshannon5
in Dermatitis Herpetiformis

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clydeshannon5 Rookie
clydeshannon5
Posted

I want to post some pics? But can't figure it out, can anyone help me?

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psawyer Proficient
psawyer
Posted

Images can not be posted here directly.

You can post them on a host such as Open Original Shared Link and then post links to them here using the url bb tag. The code for the link above is:

[url=http://photobucket.com/]Photo Bucket[/url]

clydeshannon5 Rookie
clydeshannon5
Posted
  • Author

looking for advice on scarring help with darker skin. also, wondering about hot and dry climates or cold, or humid, etc. etc. if there is a better climate to live in? my skin is so severe that I hope the Gluten free diet will do the trick,but will move if i have to.

thank you kindly

Open Original Shared Link

ravenwoodglass Mentor
ravenwoodglass
Posted
looking for advice on scarring help with darker skin. also, wondering about hot and dry climates or cold, or humid, etc. etc. if there is a better climate to live in? my skin is so severe that I hope the Gluten free diet will do the trick,but will move if i have to.

thank you kindly

Open Original Shared Link

It can take a while for the antibodies to leave the skin but once you have been gluten-free for a time the lesions should be totally gone. My DH was bad and although it took a month or two for the lesions to heal after I went gluten-free the formation of new ones stopped within a couple of weeks. You may want to try some pure coco butter on the scars but it can take a long time for them to fade. NOW sells a pure coco butter with Jojoba oil that is good and those are the only ingredients in it. Do avoid iodized salt and be sure to check nonfood items also like shampoos, lotions etc for gluten free statis as the smallest amount of CC will keep the antibodies active.

Joe Hoffman Rookie
Joe Hoffman
Posted

ravenwoodglass,

I have had these horrible lesions for over two months. I have seen two different dermatologists and they are both clueless. They both did biopsys and they both came back negative for DH.

I truly believe it is DH, but I can't get a doctor to listen to the facts. The facts are:

1. I have celiac disease.

2. I was given medicine that contained 15% dry iodine and that started the rash/hives/lesions.

3. The lesions started strictly on my elbows and ankles symetrically for the first week to ten days.

4. Next was the knees and a few days later was the shoulders, but still everything was symetrical, just a little worse on my right side.

5. Nothing,,,,, absolutely nothing on my head, face, hands feet, chest , back, butt or genital area,,,,, strictly on the outside of the ankles, elbows, shoulders and knees.

6. Then after one month of suffering from the constant burning the lesions started to spread between the affected areas.

7. We have eliminated insects and Scabies.

I am hurting really bad and I can't find anyone who will give me the Dapsone ointment.

Any suggestions would be really appreciated.

Joe Hoffman

(407) 248-9020

jkhoffman36@yahoo.com

ravenwoodglass Mentor
ravenwoodglass
Posted
ravenwoodglass,

I have had these horrible lesions for over two months. I have seen two different dermatologists and they are both clueless. They both did biopsys and they both came back negative for DH.

I truly believe it is DH, but I can't get a doctor to listen to the facts. The facts are:

1. I have celiac disease.

2. I was given medicine that contained 15% dry iodine and that started the rash/hives/lesions.

3. The lesions started strictly on my elbows and ankles symetrically for the first week to ten days.

4. Next was the knees and a few days later was the shoulders, but still everything was symetrical, just a little worse on my right side.

5. Nothing,,,,, absolutely nothing on my head, face, hands feet, chest , back, butt or genital area,,,,, strictly on the outside of the ankles, elbows, shoulders and knees.

6. Then after one month of suffering from the constant burning the lesions started to spread between the affected areas.

7. We have eliminated insects and Scabies.

I am hurting really bad and I can't find anyone who will give me the Dapsone ointment.

Any suggestions would be really appreciated.

Joe Hoffman

(407) 248-9020

jkhoffman36@yahoo.com

Did they biopsy the lesions or the skin next to them? If they biopsied the lesions themselves then the results would always be negative.

In addition to being gluten free I hope they told you to make sure all your toiletries and nonfood items are also. I had one of my worst outbreaks from doing drywall work while remodeling a storefront. I am also a glass artist and had to switch from the nontoxic glues I used to use to ones that require strong ventilation. Almost all of the nontoxic glues are gluten based. If this might be an issue for you the NIH has a household products database that has a number of nonfood products listed that have gluten, not all but many and it was how I finally found out about the drywall compound I was using.

Another thing that will break me out is distilled gluten grains. Many folks are able to tolerate gluten grain alcohol and vinegars but for me they will cause a outbreak. I switched to Heinz for products with distilled vinegar, they use corn or wood for it in a lot of products. I personally avoid carmel coloring in products as that is also grain derived and was an issue for me even though not for most others. Pet foods were another serious source for gluten contamination for me. I switched my dog and cat to nongrain foods and found a home for my pet bird. Those we the final gotchas for me.

If your wife or girlfriend use makeup or personal care products you could also be getting CC from those or even from kissing after they consume gluten. Most doctors don't clue us in on how little gluten will keep the antibodies active in the skin. One thing about those antibodies though, once they do finally leave, and unfortunatly it can take up to 2 years for them to completely clear the skin, it can take a lot to bring them back. Please note I do not mean that the lesions that you have will remain for 2 years but that new ones may crop up with very small gluten exposure until they are gone.

Also don't be too hard on the doctors that are refusing to give you dapsone, they are really doing you a favor in many ways. Dapsone is a pill not a cream and can have some very serious side effects. One thing that may help is a short 10 day course of oral prednisone. This is also a drug you don't want to be on long term but the 10 day decreasing dosage form may help while you ferret out what you are reacting to. If however you don't figure out what it is that is getting you the lesions wil reform as soon as the drug is stopped.

One last thing, are you on any supplements or drugs, OTC or script? There are no labeling regs for those and you do need to check with the maker to be sure they are gluten free. DO NOT trust gluten-free drug lists, if you use them please verify with the maker anyway as the lists are not always accurate. If you take any generic drugs those need to be checked at each refill as the companies can use a different binder whenever they want and not disclose it. Name brand drugs that are still under patent have to by law use the same ingredients while the patent is in place so those once checked will remain safe.

I hope this was helpful and if I can be of any further help please feel free to contact me. I do hope the lesions finally heal for you and do it quickly.

clydeshannon5 Rookie
clydeshannon5
Posted
  • Author

what do you mean by CC. Sorry, this is all still so new to me. I read your response about the negative biopsy, and had a couple questions about that. I had regular celiac panel blood work done,,, negative. I have been gluten free for 3 weeks now and it is helping, will that cause a biopsy and other blood work to be negative? I need some confirmation of this for insurance purposes ( i have been on dissability because it has been so bad) and am having a hard time figuring out what to do. I have read people saying that "you need to eat eat gluten 4-6 weeks before any test to be sure it is accurate" if that is the case my wife will be dressing me again. I CANNOT go back there!! So then, what are my options? I have been SO miserable, I have been on prednisone, and it does relieve the symptoms, but I really only took it out of desperation. I have weened myself down, and am just about off because the GFD has been kicking in. Is all this enough to confirm the diagnosis of Celiac?

thanks for any help :rolleyes:

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ravenwoodglass Mentor
ravenwoodglass
Posted
what do you mean by CC. Sorry, this is all still so new to me. I read your response about the negative biopsy, and had a couple questions about that. I had regular celiac panel blood work done,,, negative. I have been gluten free for 3 weeks now and it is helping, will that cause a biopsy and other blood work to be negative? I need some confirmation of this for insurance purposes ( i have been on dissability because it has been so bad) and am having a hard time figuring out what to do. I have read people saying that "you need to eat eat gluten 4-6 weeks before any test to be sure it is accurate" if that is the case my wife will be dressing me again. I CANNOT go back there!! So then, what are my options? I have been SO miserable, I have been on prednisone, and it does relieve the symptoms, but I really only took it out of desperation. I have weened myself down, and am just about off because the GFD has been kicking in. Is all this enough to confirm the diagnosis of Celiac?

thanks for any help :rolleyes:

CC is cross contamination. You run into it with processed foods that are made in the same facility as gluten foods. Another example would be if someone was cooking gluten and nongluten foods and using the same utensils. Mainly it is gluten in very small amounts.

As for the skin biopsy if you have active lesions then if the biopsy is done properly the antibodies should still be found. With the endoscopic biopsies you do need to be on a full gluten diet for 6 weeks to 3 months before the procedure to try and ensure that the biopsy is not a false negative but if damage is patchy it still can be a false negative.

For the blood test also you do need to be actively eating gluten for about the same length of time and even then the test can come back a false negative for up to 30% of us. Some doctors will confirm celiac with complete remission of symptoms on the diet but they are rare.

One thing also is that celiac does not qualify most for disability, but the resulting problems that go with it may. The reason why it usually does not qualify us is really simple, with the diet most are able to acheive almost full remission of the symptoms and are no longer disabled.

clydeshannon5 Rookie
clydeshannon5
Posted
  • Author

thanks, that clarifies things a lot. It has been 8 months that I have been really bad, but can look back and see small flare ups throughout my life. I haven't been working for two months, and the prior three months have been on limited hours. I am in the technology field, so it requires intense concentration. The short term disability was easy enough, and I have been on long term for two months now. Only about three weeks was the FIRST time any doctor even mentioned that my problem could be from gluten. Well, I take that back, the first doc I saw was a GI doc and he told me that there is this disease called celiac, but it is rare, and a biopsy confirmed that it wasn't celiac. I asked him about stomach acid depletion and he said that couldn't be because that is only seen in older people. Needless to say, I will be making an apt with him to discuss the road we have been on. Lord only knows how many people he has diverted from a celiac diagnosis. Turns out the cell/gland that makes stomach acid has been completely shut down, hence the whole digestive issue, and vitamin depletion due to no absorption of fat and fat soluble vitamins... D K etc. Once I started taking massive amounts of HcL at every meal my symptoms lessened. My skin condition was unlike anything any of the Derms had ever seen. They just chalked it up to really bad eczema, and would have had me on prednisone for the rest of my life. I am a very health conscious person, and always have been. I have never had a headache that I remember, never had the flu, never had heartburn. So this onslaught of medical issues was really puzzling to me. I am ordering the saliva swab test from the University of Chicago, so hopefully that will bring some more answers. Then I will have all my kids tested to hopefully prevent the misery that I have been thru.

thanks again,

blessings

oh, did you happen to view the photo's?

clydeshannon5 Rookie
clydeshannon5
Posted
  • Author

Hi Joe, just curious what you do for a living, possibly you are exposed to environmental things. THE DH is miserable, and I found that enviornmental stuff super cause flare ups.

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi Joe, just curious what you do for a living, possibly you are exposed to environmental things. THE DH is miserable, and I found that enviornmental stuff super cause flare ups.

This is an excellent point, you would be surprised how many things we use everyday have gluten in the ingredients somewhere. The NIH database can be helpful all though not all inclusive.

Joe Hoffman Rookie
Joe Hoffman
Posted
Hi Joe, just curious what you do for a living, possibly you are exposed to environmental things. THE DH is miserable, and I found that enviornmental stuff super cause flare ups.

I work at Lowes,,,, HOWEVER,,,,, I have been out of work and sitting in a recliner for months. Back in March of 2008 I was hit in the face/head with a 60lb box that fell from 10 feet. After 11 days in intensive care I found out I needed 3 major surgeries Neck, Shoulder and elbow. The neck surgery was first and went well, but two days after the shoulder surgery I developed skin lesions.

The day of the surgery (Oct, 30th) I was given a prescription for Epidrin which contains 15% dry iodine. Two days after the surgery I took 6 pills within 6 hours and around the 6th to 7th hour I started breaking out on my ankles and elbows.

They were so bad they cancelled my elbow surgery for three weeks. Now I am recovering from both the shoulder and the elbow with around 300+ horrible skin lesions that absolutely burn from the inside.

I've seen pictures on the internet of people with DH. My lesions are identical in size and patterns, however I have not seen a picture that is as bad as my breakout.

I have a tolerance for pain,,,,, a very high tolerance for pain,,,,, but sometimes the intense burning from the lesions, combined with the pain and aches from the surgeries get the better of me. I also have had horrible headaches since the hit in the head. The type where no matter what you are doing you have to put your head down because it feels like iyour head is going to explode.

If I can get rid of these HORRIBLE skin lesions I know I can deal with the rest of my problems.

Joe

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