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Celiac Rash - Dh
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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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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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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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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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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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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.

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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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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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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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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. sad.gifsad.gifsad.gifsad.gifsad.gif 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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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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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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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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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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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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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. sad.gifsad.gifsad.gifsad.gifsad.gif 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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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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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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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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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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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! ph34r.giflaugh.gif I don't know whether to laugh or cry at that last statement! So I put multiple emoticons.rolleyes.gif 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!smile.gif 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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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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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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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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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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    • Anyone experience brain fog like this?
      Thanks for the reply, melprkr! Feeling like you're still in a swimming pool moving is a good way to put it. It feels kind of like motion sickness, come to think of it, or a really bad hangover. I was curious because my experience of 'brain fog' in the context of thyroid problems feels so different than brain fog caused by gluten, and I couldn't quite figure out how to explain it. Swimming pool comes pretty close, though. Hope you feel better soon as well!
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    • gluten intolerance, dairy intolerance and fructose
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