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Celiac Rash - Dh


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#1 Lynr

 
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Posted 19 October 2012 - 08:01 PM

I have had blisters on my scalp and feet for many years. Dermatologists could not tell me why. In March of this year I broke out on my stomach and this rash has covered my body. Intense itch and stinging from my scalp to feet. Dermatologist have biopsied 3 times and each comes back with a different result. One was Grover's Disease, one was Follicutitis and one was eczema. All test were from the lesion, not the unaffected skin.

Yesterday my Int Med family doctor prescribed Dapsone as I begged her to try this. My rash looks and acts just like the DH that I see online. I have been diagnosed with Iron def anemia (mild), early Osteoarthritis, diabetes and went through chemotherapy for NHLymphoma in 2008. I had premature ovarian failure resulting in early menopause at the age of 30. All of the above can be caused by Celiac. I still test for an autoimmune and have negative results for MS, Sjor Syndrome, Lupus, Hepatitis, etc. I do have a cousin with Celiac and she has been gluten free for 6 years.

My question is. . . I began taking the Dapsone this morning and now have 2 doses in my system. I have been intensely itching for the past 2 hours all over my body. Is this normal for someone beginning Dapsone? When can I expect relief? I go back to the doctor on Monday for blood test and for her to check me. Thanks
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#2 rosetapper23

 
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Posted 19 October 2012 - 09:15 PM

Um....I'm just wondering--if you suspect celiac, why don't you simply eliminate gluten from your diet? Why take something as dangerous as Dapsone to resolve an issue that you suspect can be resolved with a gluten-free diet? Many of us DH sufferers refuse to take Dapsone because of the damage that it can do (especially to the liver). I cannot for the life of me understand why you would voluntarily ask for it when a very simple solution may be at hand.
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#3 Lynr

 
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Posted 19 October 2012 - 09:25 PM

Um....I'm just wondering--if you suspect celiac, why don't you simply eliminate gluten from your diet? Why take something as dangerous as Dapsone to resolve an issue that you suspect can be resolved with a gluten-free diet? Many of us DH sufferers refuse to take Dapsone because of the damage that it can do (especially to the liver). I cannot for the life of me understand why you would voluntarily ask for it when a very simple solution may be at hand.



If you could see my body and understand what I have been through for the past 8 months, you would understand. I started a gluten-free lifestyle today and if I see a positive result from Dapsone will discontinue and rely on being gluten-free. I will be checked every week by my doctor. My question is how quickly have most people seen results by using Dapsone? Nothing could be worse than chemotherapy and I survived that and my PET scan of last week shows no active cancer.
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#4 ravenwoodglass

 
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Posted 20 October 2012 - 03:33 AM

With a family history of celiac have you asked your doctor for celiac testing? If not is would be a good idea before you go gluten free. There can be false negatives with celiac testing so when you are done testing do give the diet a good strict try.
I also agree with the previous poster. Dapsone is a drug that has a lot of negatives to it. Since celiac itself can impact liver function if you can avoid taking to you should do so.
DH can take some time to resolve even on the diet and it is a good idea to limit iodine intake for a while when you go gluten free. And by the way your doctors that biopsied the lesions were clueless. They need to biopsy intact skin near an active lesion and the tests specifically for DH need to be done. If they are not looking for it they won't find it.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 jlaw

 
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Posted 20 October 2012 - 03:40 AM

Hi Lyn, welcome to the forum :-) I personally stopped using dapsone because of some concerns I had with it, and I did not have access to regular blood monitoring where I am, so I'm afraid I don't have much experience to be able to say what to expect when. I stopped it maybe after a week, and I do remember being disappointed that my itch did not magically disappear. I think I had too much hope after reading of other people's experience.I know some people try it as a diagnostic measure - it's quick results are considered by some to be indicative of DH.
It sounds like you've been well and truly down the biopsy road. It's a shame they've all been directly over a lesion. I would consider going back once more to have an area next to an active lesion biopsied if you wanted to pursue a formal diagnosis. If not, as rosetapper says, if you suspect DH, a gluten-free diet is the best (only) route to clear it up.
Best of luck.
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DH dx by skin biopsy July 2012

#6 ravenwoodglass

 
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Posted 20 October 2012 - 05:03 AM

One thing that may help with the rash AFTER you are done with celiac testing and gone gluten free is a short course of prednisone. When the doctors thought my DH was poison ivy about once a year they would give me the 10 day decreasing dose. It would clear the rash short term but of course within a couple weeks it would come back since I wasn't gluten free. You would need to talk to your doctor about it since not all folks can tolerate prednisone but IMHO it is much less dangerous than the dapsone.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 pricklypear1971

 
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Posted 20 October 2012 - 05:37 AM

Yeah, I get why you're trying it.

I didn't use dapsone because they didn't know what my rash was...but they did manage to put me on four steroids and quite frankly I'm still having effects from those. So, potato/potatoe.

I think people get relief generally within the first week, if dapsone is going to work. That said, the rash you have must heal - and that is an itchy process and can take a few weeks. I guess what you should look for is a reduction in new lesions?

Keep your rash moisturized. That helps with itching. I like Vanicream lotion. Ice packs help, too.

It took me two months gluten-free to figure out the iodine thing. Once I went LI my rash started healing and no new breakouts. rash healed in two weeks.Don't think it would have been that fast if I started both at the same time, but who knows. Antibodies take time to drop.

Anyway, give the dapsone a whirl, monitor your bloodwork with your doctor. Get Celiac bloodwork done also.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#8 Really good scratcher

 
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Posted 20 October 2012 - 08:52 AM

I have been battling a terrible skin rash for over three years now. I have seen several dermatologists. They have all been wonderful. Yet we are still trying to determine what I have. It has been diagnosed over the past three years as simple dermititis, eczema, and Psoriasis. I have been on Embrel and that failed, and Humira and that failed. I have had skin patch testing but all that turned out to be was light allergy to perfumes and added scents to lotions, soaps and creams. I have been using Free and Clear soaps, unscented lotions and creams and the total free of dyes, scents and other additives to my ointments and creams and make-up, and personal hygiene for cleansing everything. I have not noticed a change. I am also allergic to sulpher and medicine and drugs with sulpher in them. Dapsone is a sulpher based drug, but I was put on it for a tiny bit of time and my skin reacted to the sulpher in the Dapsone-so I was taken off that. On my own I have been trying the Gluten Free diet now for about three weeks. I can't see a change yet. My skin is still very, very itchy. It is a little better at the moment because I am on Prednisone.
I used to get Poison Ivy rashes every year as a kid because I explored so much in the woods and properties my parents owned. Out of my five other siblings, I would always seem to get it the worst. This makes me wonder if my skin has always been more sensitive to things, although as a kid I thought it was pretty normal.
I love how Prednisone finally clears up my skin, but as soon as I run out my skin goes back to the itchy, itchy rash and bumps. I also worry what Prednisone does to the body over a period of time. This is about the fourth time in the past three years I have been put on a Prednisone treatment.
My blood tests always come back negative for Celiacs. That's just nuts. I know it has to be related to Gluten-after researching for information on my own. I am just puzzled as to why in my middle-aged years I am now so affected with this skin condition?
I go this coming Monday to my latest dermatologist who is also a Dermatopathologist. My other dermatologists have sent her my past skin biopsies and since they came back negative to Celiac's, they wanted me to visit her while my skin was at it's worst. She had several other doctors view my skin too. They took four more skin biopsies about two weeks ago. Monday I get my stitches out, and we can go over a plan of treatment then. She believes I do have an Auto-Immune dis-order and will probably need an Immunosuppressive drug to treat it. I worry about those Immunosuppressive drugs and they lower your ability to fight off infections. At this point I am willing to do just about anything to clear up this itchy, itchy, red, blotchy, thick bumpy rash. I am hoping a Gluten Free diet will clear up my skin. I also have read it could take awhile. Sigh. I would sure love to have my skin clear up.
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#9 pricklypear1971

 
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Posted 20 October 2012 - 09:37 AM

I have been battling a terrible skin rash for over three years now. I have seen several dermatologists. They have all been wonderful. Yet we are still trying to determine what I have. It has been diagnosed over the past three years as simple dermititis, eczema, and Psoriasis. I have been on Embrel and that failed, and Humira and that failed. I have had skin patch testing but all that turned out to be was light allergy to perfumes and added scents to lotions, soaps and creams. I have been using Free and Clear soaps, unscented lotions and creams and the total free of dyes, scents and other additives to my ointments and creams and make-up, and personal hygiene for cleansing everything. I have not noticed a change. I am also allergic to sulpher and medicine and drugs with sulpher in them. Dapsone is a sulpher based drug, but I was put on it for a tiny bit of time and my skin reacted to the sulpher in the Dapsone-so I was taken off that. On my own I have been trying the Gluten Free diet now for about three weeks. I can't see a change yet. My skin is still very, very itchy. It is a little better at the moment because I am on Prednisone.
I used to get Poison Ivy rashes every year as a kid because I explored so much in the woods and properties my parents owned. Out of my five other siblings, I would always seem to get it the worst. This makes me wonder if my skin has always been more sensitive to things, although as a kid I thought it was pretty normal.
I love how Prednisone finally clears up my skin, but as soon as I run out my skin goes back to the itchy, itchy rash and bumps. I also worry what Prednisone does to the body over a period of time. This is about the fourth time in the past three years I have been put on a Prednisone treatment.
My blood tests always come back negative for Celiacs. That's just nuts. I know it has to be related to Gluten-after researching for information on my own. I am just puzzled as to why in my middle-aged years I am now so affected with this skin condition?
I go this coming Monday to my latest dermatologist who is also a Dermatopathologist. My other dermatologists have sent her my past skin biopsies and since they came back negative to Celiac's, they wanted me to visit her while my skin was at it's worst. She had several other doctors view my skin too. They took four more skin biopsies about two weeks ago. Monday I get my stitches out, and we can go over a plan of treatment then. She believes I do have an Auto-Immune dis-order and will probably need an Immunosuppressive drug to treat it. I worry about those Immunosuppressive drugs and they lower your ability to fight off infections. At this point I am willing to do just about anything to clear up this itchy, itchy, red, blotchy, thick bumpy rash. I am hoping a Gluten Free diet will clear up my skin. I also have read it could take awhile. Sigh. I would sure love to have my skin clear up.


If you've been on/off steroids during celiac testing that could well explain why you always test negative. Steroids suppress the autoimmune disease, and are used to suppress autoimmune reactions. Steroids are a contradiction to accurate Celiac testing.

Or, you could be a lucky one that always tests negative, regardless.

I was gluten-free almost 2 months before trying to go off steroid creams for my rash. It did blow up when I got off. I literally was down to a pea-sized amountvof cream when I went off...but that little bit made a difference. When I went off, that rash blew up worse, and differently, than before. Then it healed. Then I took an iodine supplament and whammo - instant blow up. That's when I figured out it was DH.

So, don't have much else for you than been there, done that. I'm allergic to sulfa drugs also. I also have adrenal damage from steroids, as well as Hashimotos.

There are alternative treatments to dapsone for DH. I don't know if they are sulfa based, also. They are antibiotics, I believe.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#10 squirmingitch

 
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Posted 20 October 2012 - 07:23 PM

Lyn & Really Good Scratcher,

Most of us with dh tend to test neg. on the celiac blood panel. The antibodies are in our skin more than regular celiacs. But some have actually tested positive on the blood panel. We also tend to have neg. on the endoscopy/biopsy b/c our villi damage tends to be patchier; again b/c the damage is more concentrated in our skin.

Then, as you have both experienced, derms who actually know about this stuff & how to biopsy it are few & far between. Like Prickly says --- any steroid treatments, topical or oral will make ANY celiac testing a wash.

I sympathize with both of you. My screen name pretty much says it all. I am 10.5 months squeaky clean gluten-free & am going through one of those spontaneous outbreaks we read can happen. I've been going through it since Sept. 10th at least. Posted ImagePosted ImagePosted ImagePosted ImagePosted Image And I am low iodine but this outbreak is about to break me. Stress is a huge factor & I will admit I've had my share of that lately.

I too am allergic to sulfa drugs. Also allergic to penicillin. That leaves Tetracycline drugs which is about the fourth line of treatment for dh as the top 3 are sulfa. I am not willing to go the Tetracycline route for 2 reasons. 1) We can become allergic to things & I don't want to cut myself off from Tetracycline ---- I hope to live quite a few years & at some point I will undoubtedly need some Tetracycline. 2) Tetracycline destroys the "good guys" along with the bad & even though our guts don't show the damage as bad as regular celiacs ---- the damage is there never the less. We fight to get good bacteria in our gut taking probiotics. I don't wish to make that task harder.

I just amde a pretty little speech there but I will tell you the truth...... There have been times where if Dapsone or steroids or what have you had been sitting on the table in front of me; I surely would have said, "Damn the consequences!" And downed the meds.

Dh is a bitch, pure & simple. But fight her we will & one day we WILL walk out the other side of this hell.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#11 jlaw

 
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Posted 20 October 2012 - 08:03 PM

Oh squirming, your post brought tears to my eyes. I guess it just made me feel a little validated. This is hell, sometimes,and sometimes I feel like I just need to suck it up, don't want to bore my hubby and friends with it all (although they would never say that is the case - they are all beautiful people). The reality is, it not just affects meal times, it's all the friggin' time. Lately, my sleep has been so poor despite my best efforts at getting on top of this. I *knew* it would take a while to heal, but I'm not seeing any improvement at all. And frankly, I'm grateful for my diagnosis, because if it wasn't for that, I would've given up, tried something else and spent the rest of my life on the wrong track. One day we will win.I know you've had some other stuff that's stressful as well. Hang in there. ((((squirming)))
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DH dx by skin biopsy July 2012

#12 Lynr

 
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Posted 20 October 2012 - 10:04 PM

Thank you for responding. This is my second day on Dapsone and I have only had to take one Benadryl today. My family says the lesions look like they are drying. I have only had one severe itchy spell and it was earlier in the day. I have been successful in eating gluten-free as well.

My dermatologist was obviously not looking for DH and I'm not sure how educated she is about Celiac Disease.

My doctor said that if my hemoglobin dropped more that I could face a transfusion. I leaned towards her and said, "So be it"! "I'd rather have a blood transfusion than have this itching and burning 24-7". Some may think I am crazy for asking for Dapsone but you are welcome to your opinion.

My scalp is showing the most improvement to me. Several of the lesions I am not feeling and the ones around my neck hairline are shrinking. I will be checked on Monday via labs. Just hoping all is good as I believe this drug is working for me. :) Another good thing is my BS was the lowest all day than it has been for months!
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#13 Lynr

 
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Posted 20 October 2012 - 10:13 PM

With a family history of celiac have you asked your doctor for celiac testing? If not is would be a good idea before you go gluten free. There can be false negatives with celiac testing so when you are done testing do give the diet a good strict try.
I also agree with the previous poster. Dapsone is a drug that has a lot of negatives to it. Since celiac itself can impact liver function if you can avoid taking to you should do so.
DH can take some time to resolve even on the diet and it is a good idea to limit iodine intake for a while when you go gluten free. And by the way your doctors that biopsied the lesions were clueless. They need to biopsy intact skin near an active lesion and the tests specifically for DH need to be done. If they are not looking for it they won't find it.



My blood test was negative and I am scheduled for a colon/endo the first week of November. I talked to my doctor about eating gluten free and resulting in a false negative. She said the villi *or whatever* would not heal in 2 weeks time. My cousin also tested negative to the blood test. Even if the biopsy comes back negative, I know in my mind that this is DH and I will see the difference in being gluten-free.
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#14 Lynr

 
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Posted 20 October 2012 - 10:18 PM

Hi Lyn, welcome to the forum :-) I personally stopped using dapsone because of some concerns I had with it, and I did not have access to regular blood monitoring where I am, so I'm afraid I don't have much experience to be able to say what to expect when. I stopped it maybe after a week, and I do remember being disappointed that my itch did not magically disappear. I think I had too much hope after reading of other people's experience.I know some people try it as a diagnostic measure - it's quick results are considered by some to be indicative of DH.
It sounds like you've been well and truly down the biopsy road. It's a shame they've all been directly over a lesion. I would consider going back once more to have an area next to an active lesion biopsied if you wanted to pursue a formal diagnosis. If not, as rosetapper says, if you suspect DH, a gluten-free diet is the best (only) route to clear it up.
Best of luck.



Thank you for the welcome! I have worried that I wouldn't see a quick result. Since I have not scratched any of the lesions to bleed today. . . I feel that is improvement. I sure hope everything works with Dapsone and I can go off it quickly. I have been gluten-free and also leaving out the iodized salt, after reading these posts.
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#15 Lynr

 
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Posted 20 October 2012 - 10:21 PM

One thing that may help with the rash AFTER you are done with celiac testing and gone gluten free is a short course of prednisone. When the doctors thought my DH was poison ivy about once a year they would give me the 10 day decreasing dose. It would clear the rash short term but of course within a couple weeks it would come back since I wasn't gluten free. You would need to talk to your doctor about it since not all folks can tolerate prednisone but IMHO it is much less dangerous than the dapsone.



I had prednisone during chemotherapy treatment and did not have adverse reactions. I will keep this in mind. :)
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