My Turn- Dh?

[jeannine]

I have also posted in the pre-diagnosis folder. I am a 41 year old female that has had a rash for one year on both lower legs. It is very red, very itchy, and burns like crazy! I will scratch at until it bleeds. It also wakes me up during the night. I also have the following symptoms of hair loss, achy joints, constipation and diarrhea, fatigue, and headaches. I started going to the doctor soon after the rash developed and have now seen 11 different doctors (my husband is in the Army, so nothing is constant). I was first diagnosed with Lupus, RA, and MCTD- and was then told I have none of these. I went back to the dermatologist yesterday and asked him about celiac disease after someone suggested it to me. He said that celiac disease would make sense but since he is a resident he had to get a more senior doctor. The senior doctor blew off the suggestion of celiac disease because it would constitute "selfdiagnosis" and I don't have a strong history of hay fever (though I've lived most of my life in desert areas and have had horrible hay fever when I've lived in farming communities- though I did not tell the doc that because I forgot how bad my allergies had been). This doctor has prescribed two weeks of cephalexin (a strong antibiotic, 4 times a day) and two weeks of clobetasol (a super strong corticosteriod. and he also wants me to wrap my legs in saran wrap at bed time).

I was put on prednisone when they thought I had lupus and the rash went away and came back as soon as I started weaning off the prednisone.

My doctor said to come back in 4 weeks and he will do another biopsy- this one to look for DH.

Does this sound like DH? Would the medications relieve the rash even if it is DH? I am tempted to go gluten free to see if that helps- but I don't want to mess up any further test results.

Thank you very much!

Jeannine

[Franceen]

Oh My! ANOTHER medical nightmare story of getting DH and/or Celiac diagnosed when it is not the standard textbook newborn "failure to thrive w/horrible diarhia" case!

I've been there, done that - similar to your story in many respects, unfortunately.

I, too, self-diagnosed, but at least I had finally found a Dr. willing to listen (an Allergist) and I come from a family of Dr's and have a pretty strong medical background, so they were willing to listen to my own diagnosis.

Hay fever has nothing to do with Celiac or DH!!! Irrelevant. Celiac and DH are autoimmune disorders and Hay Fever is an allergy. Allergy and autoimmune disorders are different, have different etiology (and can be related in a person) - but sound very similar to lay people (and even some Doctors!). You cannot desensitize a person against an autoimmune disease like you can an allergy.

Anyway, I had one Dr. tell me to sleep in wet clothing and to wrap myself in saran wrap if I didn't like getting the sheets wet (I never did this).

YES, corticosteroids will stop the DH reaction while you are taking it. I still use Prednisone when I've been Glutened badly (accidental glutening, of course!). When you have rash/skin erruptions, the scratching causes more eruptions and more itching and so it is very hard to stop it even when you've stopped ingesting gluten. It's called itch-scratch-itch syndrome. But, if you have DH and are still eating Gluten, after the steroid drug is stopped the rash will just start all over again. I have scars all over my body (they look like chicken pox scars). But my lower legs and ankles are the worst, and that is now the only place I get DH when I've been accidentally glutened.

I had negative biopsies and negative blood work. But my Dr. was willing to diagnose it as DH because of the success of a truly gluten-free diet and the fact that Dapsone (a drug) stopped it completely (supposedly Dapsone effectiveness is diagnostic). Dapsone nearly killed me, it's a very dangerous drug (so are steroids!), so don't go that way without thought and a Dr. who understands.

Army and Navy Dr's are as good as they come (maybe better because they've been to med school more recently)- but the whole medical community does not do well with adult Celiac or DH cases, especially diagnosis. They were taught that Celiac presents at birth immediately and with aplomb. Many have never heard of DH and if they have, they don't know it's related to Celiac or Gluten.

It takes a long time for the DH to go away after going truly 100% Gluten Free. So you would have to be gluten-free for at least a few months (or a few weeks at the least) to see results. And you should be eating Gluten to have the tests done effectively. (Some Dr.'s don't even know that - mine didn't - hence my negative bloodwork and skin biopsies). But I'm NOT going back to Gluten just to get some tests. gluten-free works, so I'm happy!

You may want to just try gluten-free for a while and see what happens. It's better than drugs, and needles, and scalpels and perplexed Dr's!).

Good luck and best wishes. Happy Thanksgiving

PS: I work for the Army!

[jeannine]

Thanks so much! By the way, I've been married for 17 years and have 4 kids and I love most Army doctors! I don't have any complaints with my treatment over the last year (except the last one!). I really like the fact that they are always training so they are usually up on things, and in some ways I like to see so many- it never hurts to have another opinion.

I will go gluten free and hopefully it will help. I will tell you that I'm tired of having my rash scrapped every 3-4 weeks!

Happy Thanksgiving!

Jeannine

[LoriC]

I too had the rash for over a year, My family dr. treated me for contact dermatitis and he put me on predisone 2 times..both times the rash went away and came right back as soon as i stopped the med. I had it on my lower legs too and yes it itched so bad it bled at times..i had it on my lower back near my butt, my neck, hairline, head, pubic area and across my stomach..i finally went to see a dermatologist in early august, he put me on dapsone i went back in a few weeks..the rash wasn't gone, but definitly i felt better and it had gone away in most areas, just not compltetly gone, then he told me what he was treating me for (no biopsy done) put me back on dapsone and the gluten-free diet..went back in a few weeks, it was completely gone..now i'm having flare ups..in certain areas..my face, my pubic area AGAIN and my head. I'm still on dapsone and he wants to take me off of it in Jan. either i'm not following my diet well or i'm getting glutened in some unknown way..I try my best with the diet..Goodluck.. OH ps..i went to see a gastro spec. but i was still on the diet by then. my blood work was negative, but the dr. said the diet is working stay on it! I was diagonsed with IBS 16 yrs ago..no more gastro problems..just the rash now..

[Franceen]

Yes, even though I BELIEVE I am 100% gluten-free, I still have a little rash on my shins and usually one other minor place at all times. Because I eat out a lot and travel a lot, I think I must be getting a very low level of glutening. It seems to definitely have a pattern that follows how much I eat out. I think CC is almost impossible to avoid in restaurants (except Outback and the chains owned by them) - in spite of your own and everyone in the restaurants best intentions.

Although I only had DH when the problem was diagnosed, I had had hearburn for 20 years from flour products! I told my Dr. that I get heartburn from bread/cake/crackers/rolls/etc and he told me I was putting too much butter or fats on/in them and that the heartburn was from the fatty stuff. I now know why I was getting the heartburn - it's all gone now and I can eat as much FAT as I want without getting HB!

But now when I get REALLY glutened (like scrambled eggs at IHOP that are mixed with pancake batter) - I get horrible diarhea within hours and stay gassy and bloated for days.

For the low level rash that I always seem to have, I use a hydrocortisone cream whenever it itches and I make sure I use a lot of lotion to keep skin from being dry.

[wowzer]

I feel for you. I have been through many vicious cycles of itching, rashes, blisters. What led me to the DH were 2 biopsies. I also had it in the vaginal area. They came back eczema and spongiotic dermatitis. I do have a little sister that was diagnosed at a year old. I wonder about my parents too. I did have a negative blood test, but I had been avoiding gluten subconsciously for a year before I went gluten free. I just didn't realize why at the time. I went gluten free the beginning of this year and many symptoms that I had complained to my doctor went away. He did agree that I may have it even though I tested negative. Good Luck and I hope that you are feeling better soon.

[LoriC]

Oh My! ANOTHER medical nightmare story of getting DH and/or Celiac diagnosed when it is not the standard textbook newborn "failure to thrive w/horrible diarhia" case!

I've been there, done that - similar to your story in many respects, unfortunately.

I, too, self-diagnosed, but at least I had finally found a Dr. willing to listen (an Allergist) and I come from a family of Dr's and have a pretty strong medical background, so they were willing to listen to my own diagnosis.

Hay fever has nothing to do with Celiac or DH!!! Irrelevant. Celiac and DH are autoimmune disorders and Hay Fever is an allergy. Allergy and autoimmune disorders are different, have different etiology (and can be related in a person) - but sound very similar to lay people (and even some Doctors!). You cannot desensitize a person against an autoimmune disease like you can an allergy.

Anyway, I had one Dr. tell me to sleep in wet clothing and to wrap myself in saran wrap if I didn't like getting the sheets wet (I never did this).

YES, corticosteroids will stop the DH reaction while you are taking it. I still use Prednisone when I've been Glutened badly (accidental glutening, of course!). When you have rash/skin erruptions, the scratching causes more eruptions and more itching and so it is very hard to stop it even when you've stopped ingesting gluten. It's called itch-scratch-itch syndrome. But, if you have DH and are still eating Gluten, after the steroid drug is stopped the rash will just start all over again. I have scars all over my body (they look like chicken pox scars). But my lower legs and ankles are the worst, and that is now the only place I get DH when I've been accidentally glutened.

I had negative biopsies and negative blood work. But my Dr. was willing to diagnose it as DH because of the success of a truly gluten-free diet and the fact that Dapsone (a drug) stopped it completely (supposedly Dapsone effectiveness is diagnostic). Dapsone nearly killed me, it's a very dangerous drug (so are steroids!), so don't go that way without thought and a Dr. who understands.

Army and Navy Dr's are as good as they come (maybe better because they've been to med school more recently)- but the whole medical community does not do well with adult Celiac or DH cases, especially diagnosis. They were taught that Celiac presents at birth immediately and with aplomb. Many have never heard of DH and if they have, they don't know it's related to Celiac or Gluten.

It takes a long time for the DH to go away after going truly 100% Gluten Free. So you would have to be gluten-free for at least a few months (or a few weeks at the least) to see results. And you should be eating Gluten to have the tests done effectively. (Some Dr.'s don't even know that - mine didn't - hence my negative bloodwork and skin biopsies). But I'm NOT going back to Gluten just to get some tests. gluten-free works, so I'm happy!

You may want to just try gluten-free for a while and see what happens. It's better than drugs, and needles, and scalpels and perplexed Dr's!).

Good luck and best wishes. Happy Thanksgiving

PS: I work for the Army!

What happened to you that Dapsone was so dangerous to you? i'm just curious..I've been on it since end of August, i was very sick in Sept with bronchitis and i actually thought i was dying..no joke..i was sick for 3 weeks...i had migraines real bad too..but it seems to all be gone, i wasn't sure if it was the dapsone or that i was just that sick..thanks, Lori and Happy Thanksgiving

[Franceen]

Dapsone causes Hemolytic Anemia in almost everyone who takes it (loss of red blood cells - actually it's because the red blood cells are caused to die faster than normal and the inability of the body to create red blood cells as fast as they die). (Google it - Wikopedia has a pretty good description and talks about Dapsone too) Dapsone is also dangerous for people with previous liver disease. I had Hepatitis many years ago and probably should never have taken it.

The hemolytic anemia can be tolerated by some people but not too well by others - various symptoms occur - tiredness, paleness, weakness, jaundice, loss of appetite, etc.

But some people get a "hypersensitivity" reaction to Dapsone which can occur after taking it for a while or right away. After taking it for 4 months, I started breaking out in a different way, and with a worse rash on top of the DH, rather than the DH going away. They thought that it was stubborn DH and doubled my Dapsone dose. At that point my skin started peeling off and I got very sick (sickly, like I got hepatitis again). My liver functions went way out of whack and I got to the point where I couldn't function. They figured it out and I stopped the Dapsone immediately and got better pretty quickly. It took a couple of months for my liver and RBC to recover fully.

At that point I had to go obsessively Gluten Free (I guess I had been "gluten-lite" up to then - I really didin't pay attention to all ingredients just avoided the obvious stuff).

So, Dapsone has it's risks and can do more harm than good. But some people take it for life. I've read that people take it to NOT be gluten-free, but that is a pretty dangerous thing since even with Dapsone, the damage to intestinal track is still occuring, and the rash is kept at bay, but subject to coming back any time!

Gluten Free 100% is the best treatment for DH - it isn't dangerous, non-invasive, and it works pretty well!

Good luck and be carefull with that Dapsone (ask your Dr about the side effects) - you are supposed to have a baseline Red/White Blood count done before you start taking it and periodically (every month-ish) while taking it to ensure that you aren't killing yourself. I hope your Dr. is doing that!

[LoriC]

Dapsone causes Hemolytic Anemia in almost everyone who takes it (loss of red blood cells - actually it's because the red blood cells are caused to die faster than normal and the inability of the body to create red blood cells as fast as they die). (Google it - Wikopedia has a pretty good description and talks about Dapsone too) Dapsone is also dangerous for people with previous liver disease. I had Hepatitis many years ago and probably should never have taken it.

The hemolytic anemia can be tolerated by some people but not too well by others - various symptoms occur - tiredness, paleness, weakness, jaundice, loss of appetite, etc.

But some people get a "hypersensitivity" reaction to Dapsone which can occur after taking it for a while or right away. After taking it for 4 months, I started breaking out in a different way, and with a worse rash on top of the DH, rather than the DH going away. They thought that it was stubborn DH and doubled my Dapsone dose. At that point my skin started peeling off and I got very sick (sickly, like I got hepatitis again). My liver functions went way out of whack and I got to the point where I couldn't function. They figured it out and I stopped the Dapsone immediately and got better pretty quickly. It took a couple of months for my liver and RBC to recover fully.

At that point I had to go obsessively Gluten Free (I guess I had been "gluten-lite" up to then - I really didin't pay attention to all ingredients just avoided the obvious stuff).

So, Dapsone has it's risks and can do more harm than good. But some people take it for life. I've read that people take it to NOT be gluten-free, but that is a pretty dangerous thing since even with Dapsone, the damage to intestinal track is still occuring, and the rash is kept at bay, but subject to coming back any time!

Gluten Free 100% is the best treatment for DH - it isn't dangerous, non-invasive, and it works pretty well!

Good luck and be carefull with that Dapsone (ask your Dr about the side effects) - you are supposed to have a baseline Red/White Blood count done before you start taking it and periodically (every month-ish) while taking it to ensure that you aren't killing yourself. I hope your Dr. is doing that!

NO, my doctor never did blood work before i started taking it nor has he taken any since i've been on it, I wonder if that is why my face is breaking out..its not the DH looking rash..it's not even itcy, it's more like bumps all over, like a reaction to something, but not even hive looking..hmmmm I showed him my face first part of November and he never said anything about it. I take 50mg a day, at one point i had cut them in half, cuz i was getting so tired and wasnt sure why, after i cut them in half, i felt better after a few days.

I go back in January, at that point he is supposed to take me off the dapsone, if he doesn't i'm going to tell him i want blood work done first before i think about going back on it, last thing i need is another problem. Thanks so much for the info.