Exact Symptoms Of Dh But Not Dh, What Is It Then?

[wera9666]

So my Doc is now questioning if I have DH because I have been gluten free since October but when I went off Dapsone my skin went crazy. All of my tests have been negative but I went gluten-free before I started them. My symptoms for DH are 100% on the money. I am starting a gluten challange soon where I will reintroduce gluten while still on Dapsone. If my skin breaks out they say it pretty much confirms DH and then I will have an endoscopy. If no breakout then it's most likely something else. Has anyone experienced anything similar to this and if so what did it turn out to be if not DH?

[mushroom]

So my Doc is now questioning if I have DH because I have been gluten free since October but when I went off Dapsone my skin went crazy. All of my tests have been negative but I went gluten-free before I started them. My symptoms for DH are 100% on the money. I am starting a gluten challange soon where I will reintroduce gluten while still on Dapsone. If my skin breaks out they say it pretty much confirms DH and then I will have an endoscopy. If no breakout then it's most likely something else. Has anyone experienced anything similar to this and if so what did it turn out to be if not DH?

First off, welcome to the forum.

What testing have you had done for your DH? Did they do a biopsy of clear skin next to an active lesion? This is the most accurate way to diagnose DH and if it is positive, you don't need an endoscopic biopsy - you are a celiac. If they biopsy the lesion itself it will not show positive. Or did you have the blood tests after being gluten free? Going gluten free before testing will invalidate the results. In the blood testing, did they run a total serum IGA? If you were gluten free, for how long? Sorry for so many questions, but the answers would be relevant.

[rdunbar]

From what I understand, DH can take up to 2 years to go away on a gluten free diet; this is because the antibodies which are attacking you and causing the inflammation are deposited between the layers of the skin in the case of DH. Even if your immune system stops producing more antibodies, the ones stuck in your skin will persist in causing the rash.other 'symptoms' of celiac can clear up much much faster than DH, this is because the antibodies are in your bloodstream too.

I've been gluten/casien/ corn free for @5 months and my DH has'nt gone away, but is definately getting better. It does'nt itch nearly as bad, and doesn't ooze as much any more, so i know the gluten free diet/lifestyle is doing the trick. you just have to be patient.lots of problems i had pre gluten free have improved dramatically or resolved completely; ataxia, fibromyalgia, mood disorders, achy joints, brain fog, gut pain and diarrea, ect...

As for doctors, they seem to be mostly clueless about DH; I went to a dermatologist @ 4 years ago and she gave me a biopsy for skin cancer!?! the acupuncurist told me it was acne,

all i know is I tried so many things with my DH and nothing ever made it improve until I got completely off gluten and dairy, and now its improving!

[wera9666]

First off, welcome to the forum.

What testing have you had done for your DH? Did they do a biopsy of clear skin next to an active lesion? This is the most accurate way to diagnose DH and if it is positive, you don't need an endoscopic biopsy - you are a celiac. If they biopsy the lesion itself it will not show positive. Or did you have the blood tests after being gluten free? Going gluten free before testing will invalidate the results. In the blood testing, did they run a total serum IGA? If you were gluten free, for how long? Sorry for so many questions, but the answers would be relevant.

Thanks. I've been checking out the fourum from some months now and it's been helpful.

I have had both biopsies and blood tests but because I was getting frustrated with how long everything was taking, I went gluten-free on my own and all my tests happened after that and all were negative. It was probably two-four(ish) weeks gluten-free when I had my blood (IGA) test so I understand the probable inaccuracy. I had two skin biopsies, the first one from my elbow next to active lesions was negative but I don't think the Dr did the immunofluorescent dye. When it came back negative he did a second from my rear end , this time with the immunofluorescent dye and also negative. I'm a knuckle head for taking matters into my own hands and going gluten-free before I was told to but hind sight, blah, blah...

So I am three days into my gluten challange with not too much happening yet. My skin has always waxed and wained a little while on Dapsone and I was on a little wax cycle before I started the challange but besides that only the slightest upswing in lesions since reintroducing gluten Saturday (while still on Dapsone). So I wait..and watch...some more...do I have it...do I have something else...?

[wera9666]

From what I understand, DH can take up to 2 years to go away on a gluten free diet; this is because the antibodies which are attacking you and causing the inflammation are deposited between the layers of the skin in the case of DH. Even if your immune system stops producing more antibodies, the ones stuck in your skin will persist in causing the rash.other 'symptoms' of celiac can clear up much much faster than DH, this is because the antibodies are in your bloodstream too.

I've been gluten/casien/ corn free for @5 months and my DH has'nt gone away, but is definately getting better. It does'nt itch nearly as bad, and doesn't ooze as much any more, so i know the gluten free diet/lifestyle is doing the trick. you just have to be patient.lots of problems i had pre gluten free have improved dramatically or resolved completely; ataxia, fibromyalgia, mood disorders, achy joints, brain fog, gut pain and diarrea, ect...

As for doctors, they seem to be mostly clueless about DH; I went to a dermatologist @ 4 years ago and she gave me a biopsy for skin cancer!?! the acupuncurist told me it was acne,

all i know is I tried so many things with my DH and nothing ever made it improve until I got completely off gluten and dairy, and now its improving!

Thanks. I was 9 months gluten-free when taken off Dapsone and there was zero improvement in my skin, none. But, like you, I have seen improvement in some other areas like painful joints, GERD, etc. I do actually feel better other then my skin. I have not tried excluding any other foods. My Dr came up with DH in just a few months and is still convinced, even through all the negative tests (read my reply above). He goes to a giant MD book whenever he needs DH info. He also says he sees DH 2-3 times a year but I have my doubts. Still waiting.

[ravenwoodglass]

Thanks. I was 9 months gluten-free when taken off Dapsone and there was zero improvement in my skin, none. But, like you, I have seen improvement in some other areas like painful joints, GERD, etc. I do actually feel better other then my skin. I have not tried excluding any other foods. My Dr came up with DH in just a few months and is still convinced, even through all the negative tests (read my reply above). He goes to a giant MD book whenever he needs DH info. He also says he sees DH 2-3 times a year but I have my doubts. Still waiting.

Did your doctor tell you to avoid iodine in supplements and your salt? If not that could be why your lesions are not resolving. Iodine will keep the antibodies active. Also check all your topical stuff for gluten ingredients. The gluten cannot cross intact skin but it can enter through broken skin and if you use a shampoo, lotion etc you can get CC'd through residues either on the hands or through getting small amount in your mouth, nose or eyes.

[Kay DH]

So my Doc is now questioning if I have DH because I have been gluten free since October but when I went off Dapsone my skin went crazy. All of my tests have been negative but I went gluten-free before I started them. My symptoms for DH are 100% on the money. I am starting a gluten challange soon where I will reintroduce gluten while still on Dapsone. If my skin breaks out they say it pretty much confirms DH and then I will have an endoscopy. If no breakout then it's most likely something else. Has anyone experienced anything similar to this and if so what did it turn out to be if not DH?

As one of the other posters recommended, you might try the biopsy of the area around the lesions before the endoscopy. I've had symmetrical extremely itchy rashes on my calves, arms, and back for about 30 years, showed them to numerous doctors with no diagnosis, and only had one Celiac Panel test 2 years ago (negative, but that is not uncommon with DH). No doctor even mentioned a biopsy. So, fast forward to last September. I got the flu and high stress, followed a week or two later by my first Celiac GI symptoms (D, joints, brain fog, muscle aches, etc.). I went gluten-free a month later. So, 2 months later the Celiac Panel test was (probably false) negative, then in April the endoscopy (1) biopsy was negative, but it was after only one week of gluten-full. If you have an endoscopy make sure the GI takes multiple biopsies. So, I'm left with all the DH and Celiac symptoms, but no diagnosis. The DH had become less severe through the ages. 6 months after going gluten-free it went away, even the itchy area around the "water blisters." I've read that it can take 1-2 years for the DH to disappear completely, and going gluten-free is a huge change for your GI, nervous, and other systems.

[ChemistMama]

I am starting a gluten challange soon where I will reintroduce gluten while still on Dapsone. If my skin breaks out they say it pretty much confirms DH and then I will have an endoscopy. If no breakout then it's most likely something else. Has anyone experienced anything similar to this and if so what did it turn out to be if not DH?

I think he has it backwards. If you're on Dapsone and ingest gluten and get a breakout, then it's not DH, it's something else, possibly a wheat allergy. If you eat gluten while on dapsone you shouldn't have a breakout if you have DH, the dapsone keeps you from having DH symptoms.

I suggest looking around this topic for info on the iodine patch test. Also, like others above have mentioned, keep your iodine intake low for now, and avoid NSAIDs (naproxen and ibuprofen), which can aggrevate DH.

I actually tried a gluten challenge while not on dapsone, it was totally awful and painful, so I didn't finish. You need to be on gluten for several weeks to get a positive biopsy. When I was diagnosed my blood tests were slightly positive(I was already on a low gluten diet because my son has celiac)and my skin biopsies were negative, but the iodine patch test was totally positive.

In fact, back before they had a skin biopsy test, the test they used to see if you had DH was to give you dapsone and see if the rash went away!! See here: Open Original Shared Link

[wera9666]

As one of the other posters recommended, you might try the biopsy of the area around the lesions before the endoscopy. I've had symmetrical extremely itchy rashes on my calves, arms, and back for about 30 years, showed them to numerous doctors with no diagnosis, and only had one Celiac Panel test 2 years ago (negative, but that is not uncommon with DH). No doctor even mentioned a biopsy. So, fast forward to last September. I got the flu and high stress, followed a week or two later by my first Celiac GI symptoms (D, joints, brain fog, muscle aches, etc.). I went gluten-free a month later. So, 2 months later the Celiac Panel test was (probably false) negative, then in April the endoscopy (1) biopsy was negative, but it was after only one week of gluten-full. If you have an endoscopy make sure the GI takes multiple biopsies. So, I'm left with all the DH and Celiac symptoms, but no diagnosis. The DH had become less severe through the ages. 6 months after going gluten-free it went away, even the itchy area around the "water blisters." I've read that it can take 1-2 years for the DH to disappear completely, and going gluten-free is a huge change for your GI, nervous, and other systems.

I'm now starting to break out after a couple weeks into my gluten challange. Scheduled a biopsy for next week, so we'll see what happens and go from there. I do think it's unlikely that this is something other than DH but my Dr wanted to try it. Thanks

[wera9666]

I think he has it backwards. If you're on Dapsone and ingest gluten and get a breakout, then it's not DH, it's something else, possibly a wheat allergy. If you eat gluten while on dapsone you shouldn't have a breakout if you have DH, the dapsone keeps you from having DH symptoms.

I suggest looking around this topic for info on the iodine patch test. Also, like others above have mentioned, keep your iodine intake low for now, and avoid NSAIDs (naproxen and ibuprofen), which can aggrevate DH.

I actually tried a gluten challenge while not on dapsone, it was totally awful and painful, so I didn't finish. You need to be on gluten for several weeks to get a positive biopsy. When I was diagnosed my blood tests were slightly positive(I was already on a low gluten diet because my son has celiac)and my skin biopsies were negative, but the iodine patch test was totally positive.

In fact, back before they had a skin biopsy test, the test they used to see if you had DH was to give you dapsone and see if the rash went away!! See here: Open Original Shared Link

I am very fortunate because I live about 20 min from the University of MD Center of Celiac Research and my Dr is Dr Alessio Fasano who is one of the world wide experts on Celiac and DH, so I gotta trust he's right. I think the logic behind the challenge is this; while I'm gluten free I take 100mg Dapsone/day to control my skin outbreaks until my diet takes over. As you probably know, it's trial and error to find the correct dosage balance between comfort and danger (for me my blood work dropped at 150mg/day). Once the dosage is found then adding gluten back into the equation creates new outbreak and thus confirming DH.

I could not do a gluten challenge off Dapsone. I went off Dapsone while gluten-free after about 6 months and it almost killed me. When I have a bad breakout my skin gets so itchy and painful I sleep maybe an hour or two a night. It sucks BAD. My profile picture is from that outbreak and normally I'm really really GQ good looking (ok, not really, but I don't normally look that bad).

I think it's very unlikely that I have something other than DH but the DR wanted to try this, so... BTW, I'm two weeks into the challange and am breaking out a little but progressivly worse. Scheduled a skin biopsy for next week. I have not tried the iodine test but I'll look into it. Thanks

[ChemistMama]

I am very fortunate because I live about 20 min from the University of MD Center of Celiac Research and my Dr is Dr Alessio Fasano who is one of the world wide experts on Celiac and DH, so I gotta trust he's right. I think the logic behind the challenge is this; while I'm gluten free I take 100mg Dapsone/day to control my skin outbreaks until my diet takes over. As you probably know, it's trial and error to find the correct dosage balance between comfort and danger (for me my blood work dropped at 150mg/day). Once the dosage is found then adding gluten back into the equation creates new outbreak and thus confirming DH.

I could not do a gluten challenge off Dapsone. I went off Dapsone while gluten-free after about 6 months and it almost killed me. When I have a bad breakout my skin gets so itchy and painful I sleep maybe an hour or two a night. It sucks BAD. My profile picture is from that outbreak and normally I'm really really GQ good looking (ok, not really, but I don't normally look that bad).

I think it's very unlikely that I have something other than DH but the DR wanted to try this, so... BTW, I'm two weeks into the challange and am breaking out a little but progressivly worse. Scheduled a skin biopsy for next week. I have not tried the iodine test but I'll look into it. Thanks

OK, I can see where he's going, he's going to put you on the minimum amount of dapsone that you can tolerate, then have you add gluten back. If you're breaking out, yeah, you probably have DH. I'd try the iodine test while still eating gluten, if you're gluten-free awhile the test doesn't work because there is no gluten in your system to cause the breakout. I tried a gluten challenge without dapsone, I lasted 2 days, so I feel for ya!

Also, when you're on dapsone, watch for side effects. I never had any bloodwork problems, but I did get the #2 side effect, muscle weakness, and it was totally awful. Couldn't exercise, kept pulling muscles I never knew I had, and gained 10 lbs. No Fun. Be careful, it's a nasty drug!

GOod luck with the biopsy, they aren't fun, either!!

[wera9666]

So my Doc is now questioning if I have DH because I have been gluten free since October but when I went off Dapsone my skin went crazy. All of my tests have been negative but I went gluten-free before I started them. My symptoms for DH are 100% on the money. I am starting a gluten challange soon where I will reintroduce gluten while still on Dapsone. If my skin breaks out they say it pretty much confirms DH and then I will have an endoscopy. If no breakout then it's most likely something else. Has anyone experienced anything similar to this and if so what did it turn out to be if not DH?

Received a positive skin biopsy result last Friday. No more guessing and that is awesome. I never wanted to get a positive medical test in my life before now but I'm quite pleased and that's i little creepy. I'm off to gluten free land for the rest of my life.