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Celiac Rash - Dh


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#16 Lynr

 
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Posted 20 October 2012 - 10:40 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.


I replied to someone else that my blood test was negative. Have you heard of homeopathic muscle testing? My chiropractor would test me for various drugs, food, etc. Just this evening my niece told me to close my eyes and she begin to test me. She held up a loaf of bread to my chest and I could not even hold my grip. It was like my fingers just popped apart. If you don't know about this maybe you can google. It is not uncommon for chiro's and other natural health ppl to do this. I have never thought about muscle testing gluten foods. Duh I will continue the gluten-free way of life and am seeing that my blood sugar is doing better. That is good! Like I said, I've had blisters/lesions on my scalp and feet and even on my shoulders and lower back but NEVER like what I've experienced in the past 7 months. I look like I have chicken pox. Tried to upload photos but wasn't successful. Believe me, I am totally covered with this. I'll let you all know the outcome of my blood test on Monday. Thanks for your response!
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#17 rosetapper23

 
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Posted 20 October 2012 - 11:44 PM

lynr,

I've been there and done that, too. I recently stopped my chemo treatments because they had reduced my heart function by 30%. Thank goodness, I had been a lifelong runner--now my heart is "low normal" rather than "high normal," but at least it's still in the "normal" range.

One thing that happened during my chemo treatments is that my DH seemed to go crazy. It turned out that staph had invaded my DH rash...and perpetuated it. A round of antibiotics took care of it...but now I'm pretty scarred. You might ask to be checked for staph, because chemo devastates our immune systems, and we can develop problems with staph. I'm glad your PET scan is clear. I'm in Stage IV....so I don't have much hope of ever seeing a "clear" PET scan again (however, my homeopathic remedies make me hopeful!).
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#18 Really good scratcher

 
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Posted 21 October 2012 - 04:52 PM

It's so hard right now for those of us that are DH!! I have had this skin condition for so long now, my derm wants to name it after me!LOL! It's a mystery to diagnose. I suppose that is because the panels for testing are just not that up to date. This is a relatively new disease in our world. I would venture to guess its because something agriculturally has changed in the last 30 years or so. Boosting wheat production so that is has MORE PROTEIN would be a huge guess on my part, and it also may be a conspiracy theory, but I like it. I didn't have problems when I was young, and neither did anyone else in my family. It seems like I am the only sibling, or member of my family that has ever presented with this disease. So it puzzles me as to "WHY ME?" I do have hypothyroidism, and I have GERD and heartburn or acid reflux to the point of my taking PROTON PUMP INHIBITORS and or Zantec type acid reducers more than twice a day. I hate heartburn.
With those things in my life, I know my DH is now Gluten related. Tomorrow (Monday), I see the latest dermatologist who is a DERMATOPATHOLOGIST, who also saw my red blotchy, itchy skin up close and personal. We go over a plan to help my skin condition tomorrow.
What I have been reading about gluten free is daunting to someone who has not ventured into the gluten free world all that much yet. I love to go out to eat with my husband, and we may have to cut that down considerably. We love Mexican, and a local restaurant is pretty good with the gluten free stuff. I know the owner very well and I may get her to cut out the cross contamination occurrences once I talk to her about what I know. At least twice a month my hubby and I may get to enjoy a Restaurant meal.
It still is hard to think of letting go of wheat products. I love bread and good wheat bread is what I thought was healthy! I am surprised to find out how many things have wheat in them! Salad dressing!! Wow! Pastes and thickeners all use yeast and wheat.
Now I find IODINE is a culprit too! Lots of things have IODINE!!! I have been reading about SALS too. OMG That too? What the Heck can you eat???
I thought my attitude was going to be pretty good about going gluten free, but now I certainly wonder!
For those of you who have stayed on this lifestyle I admire you! I will certainly use you as my inspiration! I have so much to learn and so much to try.
Wish me good luck as I go through this trial. It looks like a lifetime commitment, and that is what I am having a little of a hard time adjusting to at the moment. I know I will get over it, accept it and leap beyond the hardships of adjusting, but right now, I am quite overwhelmed.
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#19 pricklypear1971

 
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Posted 21 October 2012 - 05:57 PM

Dh and celiac aren't new. But they both do seem to be happening more, now.

I am only gluten-free. I was temporarily LI. I may reduce iodine if I have a DH flare (for me, they happen from immune triggers more than gluten).

DH has traditionally been said to happen in adults. That said, I've seen quite a few posts here regarding children with DH or a rash that appears to be DH. Quite honestly, I think most of what is "known" about DH is either wrong or tremendously incomplete. Part of the problem, I'm sure, is the unwillingness for Derms to test for it; and it appears from word-of-mouth, most of those that do test perform the tests improperly.

So while my restaurant habits have changed, as well as my home eating habits, I do not feel like I'm missing out. That Damn Rash made me miss a lot. Being sick made me miss a lot. All I have to do now is screen my food. Yes, I miss out on spontaneous food experiences; however, in the grand scheme of things...so what???
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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!

#20 Really good scratcher

 
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Posted 21 October 2012 - 06:32 PM

Thanks everyone for responding! I am starting to learn so much, and yet,... so much more to learn! It's still REALLY NEW to me! The support here is terrific! I will check in here quite often! To all that respond, a great Thank-You from me!
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#21 squirmingitch

 
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Posted 22 October 2012 - 09:09 AM

Lynr, I don't think you're crazy for being on Dapsone. I think dh has made you crazy; just like it's made me crazy & has made all of us who have it crazy! Posted ImagePosted Image I don't know whether to laugh or cry at that last statement! So I put multiple emoticons.Posted Image Let us know what happens with your blood. For your sake, I hope you can stay on it.

Scratcher, Don't think about sals yet. In fact, I'm starting to wonder if they have that much effect if any on dh. I think they might have an effect on some of us early on when our guts are still a mess but maybe not so much down the line a ways. Having said that --- I'm still low sals but I have this rotten, frigging, massive outbreak that is still plaguing me & I will admit it --- I'm too scared at that moment to test sals. I just want to be clear & not scratch for 2 or 3 solid weeks in a row & then I will have the guts (pun intended) to challenge the sals.

There is a very steep learning curve to the gluten-free diet. VERY steep! But there are replacements for literally everything we all used to eat. No kidding! And I will say that I am (other than the cooking involved) thoroughly enjoying eating whole foods. Really; I mean it!Posted Image Fresh fruits & veggies. You wouldn't believe how much my grocery bill has come down. I used to spend 200 - 225 every single week. Every single week. Now, I spend 75 to 100 per week. Add to that the things I order online like my cashew butter & cert. gluten-free cashews & a few things ---- roughly 100 per month. I'm still coming out WAY ahead!

I know. At first all you can think about is the things you can't eat. But soon you will come around to it & think about all the things you can eat. And believe it or not; it's sort of like Christmas with the joy you feel when you discover something you thought you couldn't eat has a gluten-free replacement & you can eat it! And it's good tasting too! When you discover those new to you items it gives you such a happy thrill --- it's like opening a birthday present.
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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.

 


#22 Really good scratcher

 
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Posted 23 October 2012 - 06:24 PM

I did see my Dermatopathologist on Monday. The biopsies she took came back negative once again, and so did the blood work for Celiac's. I am a puzzle. I am also disappointed this rash and all my conditions don't point to anything I can work on. It's frustrating!! I want a label for it, because not knowing why this rash is happening to me is for the birds.
I have to admit I am depressed about it. I thought I could keep an upbeat attitude towards this thing but it's overwhelming what they can't explain is happening to my skin and my tummy. For some reason my tummy is going beserk lately and I am really, really trying hard to stay on a Gluten Free diet. I figure it certainly can't hurt me to go gluten free. Now they want to test me for H-Pylori and have a breath test taken. I have been on Prednisone for about three weeks,so just now my skin is starting to look a bit better, but I have scarring and pigmentation where my rash has been. The prednisone treatment did not totally clear my skin up, but I itch less and the redness has gone down and so has the thickness of it gone down, it's like it has flattened out and my skin is smoother. My dermatopathologist has put me on an Immunosuppressant drug called Cellcept. At least she does think it's an Auto Immune disorder, but they can't pinpoint which one or give it a name. It's a bit scary this Cellcept drug that lowers your immune system; and I'll have to have my blood drawn once a week for awhile to make sure my white cell counts don't get thrown off and my liver tolerates it O.K. Lots of fun ahead.
In the meantime, I scheduled an appointment with a Gastroenterologist. I have had acid reflux for almost 20 years. It's time I get that checked out really well. I would love NOT to have heartburn anymore. I would think going gluten free would help that. I still have acid reflux, but maybe I'm not giving this thing much time yet.
I am considering going off coffee. This will be the hardest thing of all for me. I am a dyed in the wool, long time coffee lover. I will try green tea but wow this move will be super hard for me. I will miss coffee very, very much. I am also not looking forward to caffeine withdrawal! Headaches! Oh well, I might as well try it and get over it to see if my acid reflux gets better too. Now I hope my tummy settles down too. I go up and down with craziness there. I seem to have all the "qualifications" to be a true celiac, but the tests come back negative.
Yes I have been going gluten free for a short while now, about four weeks. I am very new to it. It's quite an adjustment for me. My dear husband is so supportive he will eat anything I prepare so it's not too hard for me.
I have been on steroids forever, mostly in creams and ointments for my skin. I have been putting something on my skin twice daily for over two years now. I would guess the steroids show up when they biopsy, so that throws the tests off. I don't know why the blood work and transglutamination tests came back negative. Maybe I do have something different. I am not the expert, but I really believe in my heart it's Celiac's or more likely Duhring's or Dermatitis Herpetiformis. I just hope one day really soon we figure this out. Plus I would love to get rid of all these medical bills and prescriptions. Thousands of dollars have been spent trying to figure out what the heck this stuff is!
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#23 pricklypear1971

 
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Posted 23 October 2012 - 06:41 PM

Steroids will make BLOOD WORK AND ENDOSCOPIES SHOW FALSE NEGATIVE. I guess it's "false", since without them you may test +. Anyway, steroids are used to send AI into remission. Any rate, the point is after YEARS of steroids you CAN NOT be accurately tested. So stop putting so much faith in them.

Now, on to the good news. You may still have a gluten issue. It may or may not be Celiac. Could be ncgs. You can still be miserable from a gluten-related rash that isn't DH.

You may also not have a gluten issue but have another AI disease. You may have SIBO. It could one or more of several things.

You could also have a permanent or temporary intolerance to another food-milk, soy, corn, etc. You could also just be making the typical newbie mistakes we all make going gluten-free - meaning you'll get better at gluten-free with time. Right now you're probably still inadvertently getting glutened. gluten-free has a learning curve.

In the beginning many if us have tummy ups and downs. We develop weird symptoms, go through stages. Going gluten-free doesn't "cure" you magically overnight (don't we all wish). I personally went through a fat intolerance stage, hypoglycemia, I had a low iodine stage for DH, a low sals stage with LI (boy, that's a bitch).....

It is a feeaking roller coaster.

So, in short...don't give up yet if you think gluten is your answer. Rule everything else out. Raise hell about the steroids possibly affecting testing. MAKE THEM ACKNOWLEDGE IT.
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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!

#24 pricklypear1971

 
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Posted 23 October 2012 - 06:46 PM

Oh, and about coffe and other acidic foods...try eating them only on a full stomach.

Have coffee after dinner. Don't eat tomato sauces on an empty stomach. No sodas. Everyone has different triggers.

Mine is gluten. Took me almost a year of gluten-free to figure that one out. Hits me 24 hours after a glutening. Go figure. Years of misery, pills, meditation....and I have a 24 hour reaction to frickin' gluten.
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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!

#25 sisterlynr

 
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Posted 24 October 2012 - 12:25 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.


I had the blood work but expect the results tomorrow. I have a question for you. I don't see new blisters but I had iodized salt today and wow. . . itching horribly! My question is: How does the appearance of the lesions change as they are healing? I see some areas that were red turning a lighter color. I have some lesions that are scabbed and have redness around them still. Will they take weeks to heal even with Dapsone? I bought a Curel product this evening and it is very soothing. My other question is why does iodized salt affect DH? Any references to point me to?

Thanks! :rolleyes:
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#26 sisterlynr

 
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Posted 24 October 2012 - 12:37 AM

lynr,

I've been there and done that, too. I recently stopped my chemo treatments because they had reduced my heart function by 30%. Thank goodness, I had been a lifelong runner--now my heart is "low normal" rather than "high normal," but at least it's still in the "normal" range.

One thing that happened during my chemo treatments is that my DH seemed to go crazy. It turned out that staph had invaded my DH rash...and perpetuated it. A round of antibiotics took care of it...but now I'm pretty scarred. You might ask to be checked for staph, because chemo devastates our immune systems, and we can develop problems with staph. I'm glad your PET scan is clear. I'm in Stage IV....so I don't have much hope of ever seeing a "clear" PET scan again (however, my homeopathic remedies make me hopeful!).


I was stage IV with NHL and had r/chop chemo in 2008 followed by 2 years of Ritauxen. I am a walking miracle and thanks to prayer, I am alive. I had cancer on my renal vein, splenic vein, liver, spleen was full, nodes all over my body were affected. It had spread to my hip, pelvic, ribs and 3 areas of my spine. I had a positive bone marrow test in addition to the above. I had many people praying for me and I kept faith in God that through this doctor, HE was going to keep me. With all the testing recently the doctors were thinking the NHL was 'back'. Instead they found Osteoarthritis, Iron def anemia and they horrible rash. I just would not accept that nothing could be done and started my research.

I am eating gluten-free but found I cannot eat Quinoa and now today realize I cannot use iodized salt, at all ! !

Really happy that I found this site. . . finding lots of good information! :)
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#27 pricklypear1971

 
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Posted 24 October 2012 - 05:17 AM

I had the blood work but expect the results tomorrow. I have a question for you. I don't see new blisters but I had iodized salt today and wow. . . itching horribly! My question is: How does the appearance of the lesions change as they are healing? I see some areas that were red turning a lighter color. I have some lesions that are scabbed and have redness around them still. Will they take weeks to heal even with Dapsone? I bought a Curel product this evening and it is very soothing. My other question is why does iodized salt affect DH? Any references to point me to?

Thanks! :rolleyes:


I knew mine was healing when it got drier, didn't spread, and the itching was less. It was less swollen. After a few days I had no doubt. I had to keep mine very moisturized because the scabs were cracking and flaking...my rash was like a "blanket"...so lots if peeling. I would soften the scabs in the shower and gently rub and they would come off.

Iodine would make mine itch like crazy...egg yolks and seaweed products are particularly bad for me. Potato skins and asparagus would do it, too. I ate so much iodine at thanksgiving last year it triggered a flare, not just contributed to the problem.

There are many references to iodine as an antagonist out there. Not all medical literature cites it, but quite a few Celiac sites will. The big "study" if you want one was a case study by a dentist about a patient who had a flare from surgical sutures being packed with iodine solution. If you google it you'll find it. It's on medscape, 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!

#28 jlaw

 
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Posted 24 October 2012 - 05:37 AM

I knew mine was healing when it got drier, didn't spread, and the itching was less. It was less swollen. After a few days I had no doubt. I had to keep mine very moisturized because the scabs were cracking and flaking...my rash was like a "blanket"...so lots if peeling. I would soften the scabs in the shower and gently rub and they would come off.

Iodine would make mine itch like crazy...egg yolks and seaweed products are particularly bad for me. Potato skins and asparagus would do it, too. I ate so much iodine at thanksgiving last year it triggered a flare, not just contributed to the problem.

There are many references to iodine as an antagonist out there. Not all medical literature cites it, but quite a few Celiac sites will. The big "study" if you want one was a case study by a dentist about a patient who had a flare from surgical sutures being packed with iodine solution. If you google it you'll find it. It's on medscape, I believe.


I have an article from a dermatologist who specialises in DH which lists iodine to be avoided. Doesn't go into detail why, but I always think it's nice to have acknowledged. I only have it in PDF form though, so don't know how to make it available to everyone :-(
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DH dx by skin biopsy July 2012

#29 mendylou

 
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Posted 24 October 2012 - 03:27 PM

Ihave never posted any info before, but here goes. I have been plagued with skin conditions since I was a child. Have seen many doctors, given many ointments, prednisone doses, taken allergy shots for over half my life. No success. I am 60 yrs old, and almost 2 years ago while talking to a colleague who went many years before being diagnosed with celiac started talking about her conditions & I thought that is me. In Dec it will be 2 years gluten free. I have severe dermatitis herpetiformis and after almost 2 yrs I think I see improvement. For those of you who think recovery will come suddenly, it will not. I believe deposits accumulated under my skin for so many years that hopefully i am seeing the light at the end of the tunnel. I have also not taken dapsone thru this time.
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#30 sisterlynr

 
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Posted 24 October 2012 - 09:09 PM

Ihave never posted any info before, but here goes. I have been plagued with skin conditions since I was a child. Have seen many doctors, given many ointments, prednisone doses, taken allergy shots for over half my life. No success. I am 60 yrs old, and almost 2 years ago while talking to a colleague who went many years before being diagnosed with celiac started talking about her conditions & I thought that is me. In Dec it will be 2 years gluten free. I have severe dermatitis herpetiformis and after almost 2 yrs I think I see improvement. For those of you who think recovery will come suddenly, it will not. I believe deposits accumulated under my skin for so many years that hopefully i am seeing the light at the end of the tunnel. I have also not taken dapsone thru this time.


My blood test for Dapsone is still not back :( . I am seeing a tremendous improvement in some areas. I had the rough, red skin on my sides and those places have almost disappeared. I am in shock!

I almost decided to stop taking the Dapsone today. About 2 hours after I take a pill, I seem to have an itchy episode on the underneath of my arms that have not broken out previously. This rash/itch is not like the other lesions. Just thinking that could be a rash from the Dapsone? I will call my doctor tomorrow. I figured it would take several months for all my skin to clear as it covers head to the feet. One itchy, burny mess!

Good luck to you!
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~





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