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Good Dermatologist - Finally!
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So, I've been reading here for a while now trying to figure out what's going on. Thanks to many of you as you have helped immensely. Simply feeling like I'm not alone has been a huge help!

Like most of you I've had GI problems of and on for years. Been told I have IBS, reflux, the usual, but it never seemed right. Last summer I started to itch, insane itchy small bumps that lasted forever. They were head to toe, my knees, elbows, shoulders, tail bone, and hairline you name it. Saw my allergist and he threw out DH. Did the celiac blood test, negative. Saw a dermatologist who thought I was crazy, "that's so rare!" but agreed to biopsy. Of course after the fact, I read here how he did it wrong, it was negative. I went gluten free and the rash went away, after a few week I tried to re-introduce, got really itchy! Surprise, surprise.

I asked my primary for a recommendation on a better dermatologist and she recommended just calling the local university/medical hospital, they have a special derm department. It was a bit of a drive but the Dr. was great. He listened, said, "yes, it's rare but it does happen." The fact that steroid creams have no effect was a sign it was DH, and of course the fact that I can control the rash with the proper diet was also a clear sign it was DH. Basically, everything I described he said sounded like DH.

I did go back on gluten for just a little bit before the appointment and there was enough rash on my upper back/hairline for the punch biopsy, next to the rash I might add, but it was still negative. He nearly apologized for not being able to "officially" diagnose me with DH but said to continue the gluten free diet.

Interesting is that one other recommendation he had for the itch is benadryl. He also gave me a prescription for a stronger version of benadryl. Said to take it every night regardless and it will help. It makes you really sleepy though so I only take it when needed. It doesn't heal the DH or anything, the antihistamine simply helps take away the itch. He also mentioned the dasapone but without the official diagnosis I think he's hesitant to prescribe it which is fine, I don't think I need it anyway. He did say come back if I can't control the rash with the diet.

Though it seems like most doctors are clueless, there are a few out there that DO know about DH. It feel good to be validated by a medical professional instead of second guessing everything.

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So, I've been reading here for a while now trying to figure out what's going on. Thanks to many of you as you have helped immensely. Simply feeling like I'm not alone has been a huge help!

Like most of you I've had GI problems of and on for years. Been told I have IBS, reflux, the usual, but it never seemed right. Last summer I started to itch, insane itchy small bumps that lasted forever. They were head to toe, my knees, elbows, shoulders, tail bone, and hairline you name it. Saw my allergist and he threw out DH. Did the celiac blood test, negative. Saw a dermatologist who thought I was crazy, "that's so rare!" but agreed to biopsy. Of course after the fact, I read here how he did it wrong, it was negative. I went gluten free and the rash went away, after a few week I tried to re-introduce, got really itchy! Surprise, surprise.

I asked my primary for a recommendation on a better dermatologist and she recommended just calling the local university/medical hospital, they have a special derm department. It was a bit of a drive but the Dr. was great. He listened, said, "yes, it's rare but it does happen." The fact that steroid creams have no effect was a sign it was DH, and of course the fact that I can control the rash with the proper diet was also a clear sign it was DH. Basically, everything I described he said sounded like DH.

I did go back on gluten for just a little bit before the appointment and there was enough rash on my upper back/hairline for the punch biopsy, next to the rash I might add, but it was still negative. He nearly apologized for not being able to "officially" diagnose me with DH but said to continue the gluten free diet.

Interesting is that one other recommendation he had for the itch is benadryl. He also gave me a prescription for a stronger version of benadryl. Said to take it every night regardless and it will help. It makes you really sleepy though so I only take it when needed. It doesn't heal the DH or anything, the antihistamine simply helps take away the itch. He also mentioned the dasapone but without the official diagnosis I think he's hesitant to prescribe it which is fine, I don't think I need it anyway. He did say come back if I can't control the rash with the diet.

Though it seems like most doctors are clueless, there are a few out there that DO know about DH. It feel good to be validated by a medical professional instead of second guessing everything.

Yes, it does feel good to be supported.

My derm suspected DH but my rash was "morphed" by the steroid cream (he gave me the rx before I broke out, based on me telling him it spontaneously happens, when I went in to get a freckle/mole removed). I didn't have gi issues at the time and couldn't trace the rash back to food.

Anyway, steroids worked for me to a degree - shots did nothing but mess up my adrenals, oral prednisone would clear it but left me devastated, and topical steroids kept it "dry" and looking scabies-ish.

My derm knew it was AI, but didn't think it was DH because the steroids changed the appearance and behavior.

After I got off steroids - whoa...classic DH.

He also tried me on a very strong antihistimine that I think may have dampened the symptoms, but maybe only numbed my brain and made me sleep. It was also an antipsychotic.

My rash responds very well to gluten withdrawal, and even better to iodine withdrawal. When I figured out iodine, I knew it was DH.

I'm due to go in to my derm for another mole/freckle and will write all of it down and take pics. He was very encouraging over the phone when I talked to him after figuring out gluten and iodine. He wanted to biopsy but I never really developed another good breakout when I could get in to see him. I'm 1 year+ gluten-free, I doubt enough antibodies are left at this point.

I will always be grateful he pushed me to figure out what AI disease was causing it, instead of saying "live with it".

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You sound like me! These are the exact things I have been going through. I even go the the University Dermatology department! I've been a subject of their Grand Rounds. Still no true DH or Celiac diagnosis! I have been trying Gluten Free for almost a month now. I still have heartburn really terribly, but I feel a little better. My stomach still goes crazy up and down with D and C, and my skin is only partially cleared up due to being recently on Prednisone. My derms do think it definitely is an Auto Immune Disorder and just recently put me on an Immunosuppressant drug called Cellcept. They did try Dapsone-- and for two days my skin started to clear up, and then it reversed because I am allergic to sulphur, and a new and separate rash began on top of the DH. Not fun. They took me off Dapsone immediately. They think this Cellcept will do the trick, but I am on my fourth day of it, and my skin is beginning to get itchy again. It's tolerable, but I just wonder. I am still trying to do this Gluten Free thing, and it's not easy. 50 years of eating wheat with no thought of it being damaging is a very long lifetime habit to break. I have three good sized sons, all over six feet tall and they eat food like crazy. Bread and wheat being a staple and they love it. My hubby also loves wheat and breads. However, hubby will eat any meal I prepare and will not complain. He also cooks some and most of the things he cooks are naturally gluten-free, like grilling, and rice dishes. He makes a mean chili and I hope I can help him alter that a bit so it is gluten-free for me. I am still adjusting to this gluten-free lifestyle. I am trying to keep upbeat about it, but it is so challenging right now and expensive. A friend of mine sent me the tax deductions you can take for being a Celiac. Kind of cool, and to do it right, I want to build an Excel spreadsheet! LOL I work on Excel spreadsheets all day for my day job!

You've been gluten-free for a year now. How did you adjust to this?

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You sound like me! These are the exact things I have been going through. I even go the the University Dermatology department! I've been a subject of their Grand Rounds. Still no true DH or Celiac diagnosis! I have been trying Gluten Free for almost a month now. I still have heartburn really terribly, but I feel a little better. My stomach still goes crazy up and down with D and C, and my skin is only partially cleared up due to being recently on Prednisone. My derms do think it definitely is an Auto Immune Disorder and just recently put me on an Immunosuppressant drug called Cellcept. They did try Dapsone-- and for two days my skin started to clear up, and then it reversed because I am allergic to sulphur, and a new and separate rash began on top of the DH. Not fun. They took me off Dapsone immediately. They think this Cellcept will do the trick, but I am on my fourth day of it, and my skin is beginning to get itchy again. It's tolerable, but I just wonder. I am still trying to do this Gluten Free thing, and it's not easy. 50 years of eating wheat with no thought of it being damaging is a very long lifetime habit to break. I have three good sized sons, all over six feet tall and they eat food like crazy. Bread and wheat being a staple and they love it. My hubby also loves wheat and breads. However, hubby will eat any meal I prepare and will not complain. He also cooks some and most of the things he cooks are naturally gluten-free, like grilling, and rice dishes. He makes a mean chili and I hope I can help him alter that a bit so it is gluten-free for me. I am still adjusting to this gluten-free lifestyle. I am trying to keep upbeat about it, but it is so challenging right now and expensive. A friend of mine sent me the tax deductions you can take for being a Celiac. Kind of cool, and to do it right, I want to build an Excel spreadsheet! LOL I work on Excel spreadsheets all day for my day job!

You've been gluten-free for a year now. How did you adjust to this?

I was so desperate to fix the rash (and knew I couldn't tolerate the preferred treatment - steroids, and that no others seemed to fix it) that I would hear shaved my head and danced naked at the World Series. So....the decision was easy.

The execution took some time. I walked into gluten-free hoping it would fix the rash, and being optimistic it would help "something else". Those "somethings" being the multitude of issues that seemed to be popping up daily - exhaustion, etc. btw the nd I was seeing didn't have a clue about the rash. She would have insisted it was scabies except I'd already been down the derm path. She did suggest gluten-free because I was already dx'ed with Hashimotos and my adrenals were struggling.

Perhaps it was easier for me because I grew up in a house where 90% of the meals were cooked at home so I wasn't intimidated by cooking? I'm not saying you are, but I wasn't nervous about cooking...I was confident I could cook gluten-free. Some people aren't. And I'm comfortable not eating out.

I don't LIKE having my options limited, but I'm ok with it.

You just learn as you go. Laugh at your mistakes. Roll with the setbacks.

One thing I would suggest is to try a low iodine diet, because it is a way to "fast-track" healing if it's DH. You can find the diet info at thyca.org.

If you can get the rash to go down it will make concentrating on gluten-free much easier. IMO.

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Thanks to you both! It's always good to know your not alone!

Really good scratcher - It's been an adjustment for sure. I have two kids, one of which is also allergic to eggs, milk and soy so adding all things gluten to that list has been a challenge to say the least. I have found I need to be super strict with the diet, any little trace amount will cause a setback. My skin started to heal pretty quickly but It probably took a good 6 months to really see a difference in things like my energy level and just over all well being. For the first time in years I feel good. LIke this is how normal people go through life, not feeling like crap all the time. I'm not happy about the diet that's for sure, still get down about it from time to time but I'm finding it a necessity so what can you do but just move on the best you can.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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