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Crimson

Dh?

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I went to the hospital to have a swab taken. I hope they run the right tests. I have no idea what they'd test for. I asked specifically for a DH test. The Dr. didn't seem to get what DH actually is. I tried to explain it but I'm not sure I got my point across. Doctor's don't seem to like people who do their own research.

So, this turned up yesterday and started spreading down my hand.

0817091500a.jpg

0817091501a.jpg

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I thought it looked like a less extreme version of the pics I've seen on the net. It is still spreading. And itchy. They tried to give me anti viral meds and steroids...ofcourse. Steroids for EVERYTHING. I've just been putting Benadryl Gel on them.

Were you tested? Do you know what to expect? The dermatologist that I made an appointment with for next Monday is supposed to have experience with DH. At least that's what the receptionist said.

I'm not trusting that the hospital is running the right tests. So, I went ahead and made the appointment instead of waiting for a referral of some kind.

I'm just very nervous about all this.

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I thought it looked like a less extreme version of the pics I've seen on the net. It is still spreading. And itchy. They tried to give me anti viral meds and steroids...ofcourse. Steroids for EVERYTHING. I've just been putting Benadryl Gel on them.

Were you tested? Do you know what to expect? The dermatologist that I made an appointment with for next Monday is supposed to have experience with DH. At least that's what the receptionist said.

I'm not trusting that the hospital is running the right tests. So, I went ahead and made the appointment instead of waiting for a referral of some kind.

I'm just very nervous about all this.

I'm sorry that you're going through this :(

My husband's DH looks like that. The dermatologist is supposed to biopsy the skin in a few places....not on the actual eruptions, but next to them, on clear skin. They will inject you with a local anesthetic before the biopsy.

The drug that treats DH is a pill called Dapsone. It has lots of bad side effects but my husband took it because he was desperate! DH is horrible!! The Dapsone did help with the itch and it helped it heal faster. He also uses a topical steroid cream.

Good luck with everything!

JoAnn

P.S. there is a old-fashioned test for DH that involves putting iodine on your skin (iodine soaked bandaid?) that some people in this forum have tried. I think you need a strong solution. If you leave it for several hours and you have DH, you'll develop a bandaid-shaped patch of DH there! Ouch. Here's the thread:

http://www.celiac.com/gluten-free/index.php?showtopic=57732

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Thank you for your replies. I'm sorry that your husband had to take the meds. I hope the best for him and that he gets much better!

So, here is a pic of what my arm looked like after the Dr. in the er took a swab and the blisters were busted.

0820090747a.jpg

And here is the pic of the iodine patch test that I did. I used a solution of 2.4 % on a band aid and left it on for a couple of minutes before I moved the band aid and left it on for about an hour before I couldn't stand it anymore. It burned like mad!!! I took the band aid off and it left a stain that was one huge blister and one very bad small blister the next morning. The blister broke and the skin came off almost immediately. It's now *as you can see in the pic a nice square patch of raw skin*... icky, to say the least. I'm keeping it covered with antibiotic ointment and a bandage until I can see what this dermatologist says tomorrow morning. He's going to think I'm a nut case for doing this to myself!

Anyway... two days after iodine band aid debacle..... you can even see where I have a rough patch where I had the band aid before I moved it. It also scabbed over and the skin flaked off this morning.

0823091426a.jpg

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So, here is a pic of what my arm looked like after the Dr. in the er took a swab and the blisters were busted.

A swab? You need a skin biopsy to properly diagnose DH. The doctor needs to biopsy near a blister, not the actual blister. However, your iodine experiment below pretty much cinches it...

I took the band aid off and it left a stain that was one huge blister and one very bad small blister the next morning. The blister broke and the skin came off almost immediately. It's now *as you can see in the pic a nice square patch of raw skin*... icky, to say the least. I'm keeping it covered with antibiotic ointment and a bandage until I can see what this dermatologist says tomorrow morning. He's going to think I'm a nut case for doing this to myself!

That is exactly what happened to me with the band-aid test. A huge blister, plus the other blisters nearby got bigger. My Dr. said "that's what I get for having a scientist as a patient, you're experimenting on yourself!!" :)

If you're still eating gluten, you should have a blood test to confirm celiac/DH, the University of Chicago has a great site to print so your Dr. knows which tests to run:

http://www.celiacdisease.net/testing

If you're itching, my doctor recommended Sarna lotion (the one that contains pramoxamine hydrochloride) to help with the itch and pain, it works rather well. nasalady below is correct, dapsone does work but the side effects are awful. Don't go gluten-free until you've had your blood tests and biopsy, then it's gluten free for you, m'dear! My condolences!! DH is awful.

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Thank you for the support. I really appreciate it! I will be checking that link as soon as I'm done here. TY!

Yea, I knew the Dr. at the ER had done it wrong.

But, I had said the last time that I broke out, I would go. So, I did. I did try to explain it to him. But, he had no clue what I was talking about. Again, I'm off to the dermatologist tomorrow morning. So, that's good.

I was gluten free for over a year. When this showed up, I started eating gluten again. The ball is rolling for me...I figure that I should because I would have to get more testing done. I will be making an appointment with a doctor that will take a month to get into see, so that should be enough time to get my IGA levels up enough to cause a positive blood test. Then I suppose it's off to the GI Doc...

I'm thinking instead of eating gluten foods that I may stay on my regular paleo type diet and just eat vital wheat gluten as kind of an additive to my food. I can't stand eating these foods. A few days of it and I feel like hell. Today I started taking wheat germ and swallowing down two table spoons of it with water after a meal. I'm not sure how much gluten is in that. So, tomorrow, I will be picking up the box of vital wheat gluten and doing the same with it. I just don't like glutenous foods. I should be able to keep the gluten reaction w/out having to eat the foods.

That should make it easier to switch back to gluten-free life. Just quit taking the vital wheat gluten.

I'm seriously curious if anyone has tried this on gluten challenge...

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Crimson, Just having that nasty rash, indicates that you came into contact with gluten. Do you know if you ate or handled something that contains gluten? I've met people that claim they can't even touch a slice of wheat bread without breaking out.

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haha Funny you should say that.... As stated, I had been gluten free for over a year. The only time I have trouble is when I come into contact with gluten. This one, as far as I can tell is because we had company over and had run out of paper plates to use for those who used buns *pretty much everyone but me* and used regular dishes. I washed the dishes and had the blisters the next day.

I know, should have known better.

*shrugs* live and learn, yes?

It's all good. I needed to do this.

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Hi Crimson, your picture of the Iodine band aid patch test looks exactly like mine when I posted may 3rd, it would be nice to see if this is a valid test by trying the same thing with some one who dos'nt have DH , all I know is I started having skin problems 30+ years ago , been seeing doctors about this for 25+ years , in march with the help of this forum learned about DH and started going GFD in april . blood test in may were negative ( 5 weeks GFD ) and dermatologist at the VA biopsied the lesion instead of a DIF test next to it. they said the DIF was to expensive and would only do it if they really thought thats what I had !!! they blew off my Iodine test as they still had my diagnosis as nuerotic excorations , same as 3 years ago when I refused antibiotics again----- the doctor asked me if I thought I new more than him.... I got copies of my medical reports and at my june check up asked the doc about my biopsie , she agreed with my reading that it was negative for infection, I then asked her if that means if I then must have an autoimune problem, she said oh no it must be your nerves ?????? at least I got her to blood test me for nutrition vit ,minerals ect , about 10 different things. only B1 was a little low so I'm taking thiamin. also at that check up I was much improved and they still dismissed DH as it did'nt present like classic hives? symptoms . this is at Hines VA in Chicago with most of their Doctors coming over from Loyola so they should know what they're doing. now almost the end of August and I'm about 95% cleared up, last break out a couple of weeks ago and I can count the lesions I'm still dealing with on one hand , of course the purple marks take much longer to fade , this is the best I've been in along time and my friends have commented that I look better. I feel like I had to be my own Dr House to get my own self Diagnosis as they seemed to resent my research . Sorry about the long response just tired of 25 years of dealing with the medical system and since I'm almost all "Healed " up on a GFD then I must have DH & Celiac ?? thanks Dan

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Hi, Dan. Sorry that you've had such a hard time with diagnosis. Reading some of the stories here, I'm sure you realize that you are not alone in this. I was just sticking with the self diagnosis until this happened. Might as well go through with it.

About the patch test:

My husband actually agreed to put an iodine soaked band aid on his arm too. And his did stain and burn a bit, but did not blister up like mine did. He has an outline of where the adhesive from the band aid was touching him, but that is it. I will have to take a pic of it and post it here too! The difference is pretty obvious.

Ok, I visited the dermatologist today. And he looked at my arm and hands and said that it looked like eczema.... until I showed him the ones on my knee and on the backs of my ankles, the pics that I've posted here and my lab results from enterolab. Then he said that it was possible but rare. He dismissed the patch test and told me that all I did was create a chemical burn. I wish now that I HAD printed off the information on the iodine induced DH! <_< I'm none too thrilled about that.

He told me to come in when I have active lesions... I can call and come in when they appear then he will take a biopsy. I'm a bit unconvinced that he is the right dermatologist for me.

So. I find that my first day with a tbsp of vital wheat gluten is proving to really mess me up!

It seems to be aggravating my headache and joint pain *which is now NOT going away with pain medicine now* and making me feel even more sluggish and tired. I'll get through this.

Next step, try to get some blood tests done.

Anyone know a good Dr in the Eastern WV or Cumberland, MD area???

Just need one that will at least humor me.

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Sorry it took so long. So, this is my husband's arm. He put the iodine soaked band aid on for one hour. *same amount of time that I did* This is what his arm looked like two days later. There's a ring where the iodine had stained the skin but no blistering or other skin reaction. It looked similar to the area where I had the band aid on my arm for a few minutes before moving it to where I left it for an hour. But I did get a rash in that area.

There's still no skin reaction on my husband a week later.

0826090653a.jpg

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About the patch test:

My husband actually agreed to put an iodine soaked band aid on his arm too. And his did stain and burn a bit, but did not blister up like mine did. He has an outline of where the adhesive from the band aid was touching him, but that is it. I will have to take a pic of it and post it here too! The difference is pretty obvious.

Ok, I visited the dermatologist today. And he looked at my arm and hands and said that it looked like eczema.... until I showed him the ones on my knee and on the backs of my ankles, the pics that I've posted here and my lab results from enterolab. Then he said that it was possible but rare. He dismissed the patch test and told me that all I did was create a chemical burn. I wish now that I HAD printed off the information on the iodine induced DH! <_< I'm none too thrilled about that.

He told me to come in when I have active lesions... I can call and come in when they appear then he will take a biopsy. I'm a bit unconvinced that he is the right dermatologist for me.

So. I find that my first day with a tbsp of vital wheat gluten is proving to really mess me up!

It seems to be aggravating my headache and joint pain *which is now NOT going away with pain medicine now* and making me feel even more sluggish and tired. I'll get through this.

Next step, try to get some blood tests done.

Anyone know a good Dr in the Eastern WV or Cumberland, MD area???

Just need one that will at least humor me.

Crimson, I really hope you find a good doctor/dermatologist! Preferably one who's had experience diagnosing DH!! I can't believe that doctor blew off the iodine patch test....that was the classic test for DH! :(

See the following article which shows a picture of the reaction of twin girls, one with DH the other with celiac disease but no DH, to the iodine patch test. Medical researchers use it, for crying out loud!!

http://www.nature.com/jid/journal/v115/n6/full/5600901a.html

Best wishes,

JoAnn

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Thank you, JoAnn. I have already printed the information on the iodine patch test and intend to take it to my next visit.

Yes, he blew it off. But he did agree to biopsy when I have fresh lesions.

So far, I've had small pimple like bumps that I end up scratching open either in my sleep or before I realize what they are. It took two weeks to really break out last time. So, I'm still on the gluten.

I put on a bit of weight at first *10 lbs in 4 days!* now it's falling off FAST. At this rate, I'm going to end up underweight again in no time. I got up to 125 and now it's dropping off at about two lbs a day. I'm about 5'4" and muscular because I instruct pilates and weight lift. I was able to build so much muscle during my gluten-free time...

Guess that's gone for now. I'm still strong, but I FEEL weak. Back to caffeine to make it through the day.

I intend to have blood tests run after another week or so of eating gluten.

I really should have done this all when I first got really really sick.... I just wasn't sure it was the issue until I went gluten-free. Once I did and felt so much better, I didn't want to go back.

Every day I say "I don't think I can do this again tomorrow" yet, every day, I make it.

It's bizarre to me.

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    For like $100 more, add the DGP IgA test as well.  The EMA is expensive because it is labor intensive (lab), so consider skipping that test.   Why find out if you have the MTHFR gene?    What is that knowledge going to do for you?  I have probably have the MTHFR gene.  My B-12 and Folate used to be off the chart when I was consuming soy milk that was fortified with cheap unmethylated forms of vitamins.    (I used soy milk before my celiac diagnosis because I was lactose intolerant).  I ceased all vitamin supplements and dropped any foods that were enriched  (or you can purchase more expensive methylated versions if you want to supplement) and those levels dropped down to normal levels.  I found that If I ate a normal healthy and varied diet and healed from celiac disease, I do not need supplements.   It appears that I was not able to process unmethylated vitamins because I might the MTHFR gene.  Just a theory.   Knowing I have the gene?  What is that going to do for me?  Will it change my behavior or save me from a new illness?  Can my doctor formulate treatments based on that knowledge?  Can he manipulate my genes?  NOT YET.  This might be beneficial in the future, but science is not there yet.  Just lots of websites trying to sell you vitamins.  Believe me, I have a family full of Autistic family members, so the MTHFR topic is of interest to me. Consider ruling out celiac disease first, address other issues that can impact joints like RA or Crohn’s), then eat a healthy diet that may or may not include gluten or processed food.  I have a friend who is on week three of the Whole 30 diet.  She ruefully confessed that she is feeling so much better.  In a few weeks, she will add foods back in that might be giving her issues.  I think she realizes that her Standard American Diet is not the healthy way to go.  Although she is happy about feeling significantly better, she is sad because she knows that she is going to have to give up all that junk food which seems to be making her sick.  I hope she moves forward because good health is priceless.      
    Thank you so much, cyclinglady. Yes, very helpful! I want to tell her the exact tests I want.  I am thinking I should request: tTG-IgA Total serum IgA Do you agree? I am on a super high-deductible health plan, so I end up paying for all of these, so I don't want to go overboard while still being as sure as I can be. Not related to celiac (as far as I know) but I was also reminded that my sister has the MTHFR gene mutation (homozygous C variant), so I need to ask her to be tested for that as well... She is going to think I am nuts, and that is fine. ;)
    Oh no!  One celiac test?  Only one was given?  The TTG IgA, I assume or you just got the Immunoglobulin A (IGA) test?  You should insist on the complete celiac panel.  You should also know that  some people with DH do not test positive on any of the celiac blood tests.  If your skin biopsies are negative, make sure they biopsy was taken correctly — not on the rash, but adjacent.  This mistake is make ALL THE TIME by dermatologists.   Because of what you disclosed in another post, you should consider asking a Gastroenterologist and not your GP (who seems to know little about celiac disease and testing) why you had small intestinal damage (per initial biopsies) went gluten free and later a second biopsy revealed a healed small intestine, yet you were not given a celiac diagnosis.   Later, it seems you started consuming gluten again or were getting traces of gluten into your diet, and now may have developed or worsened your DH. Quote: “Hi, I have been trying to get a celiac diagnosis for awhile now. I had an endoscopy years ago that showed flatted villi but the biopsy said "possible sprue or possible duodonitis." I went g.f. and had another test a few years later. The villi were normal but I had what I thought was a d.h. rash. The dermatologist said it did not look like d.h. and said it was just eczema.  To test myself, I started eating gluten again. I have occasional bowel issues but not like I had years ago.” Now my legs look like I have d.h. again.” You can go gluten free and safely prepare gluten in your house.  I did this for 12 years when my hubby was gluten free and before I was shockingly diagnosed.  You just can not ingest gluten.  The only thing you need to avoid is flour because flour has been documented to stay in the air or fall on surfaces for up to 24 hours (one reason not to have a coffee in a bakery or donut shop — sit outside!)  You can cook pasta, make sandwiches, open a box of cookies....whatever!  Just do not use loose flour.   If he needs a birthday cake, have a friend bake it at their house.  Or he may love a gluten-free cake.  Soon I will be baking my kid a gluten-free Chocolate Mayonnaise Cake for her birthday and she is not celiac!  She actually prefers it to a gluten-containing bakery cake!   There are plenty of alternate grains besides wheat, barley and rye for your son.  Think outside the box.   I have said this before you should get your son tested for celiac disease.  I have allergies and I never had a positive for wheat.  Wheat allergies and celiac disease are separate issues.  He may very well have celiac disease.  Why?  Because his mom had a positive intestinal biopsy and went gluten free and then had a repeat intestinal biopsy and healed.  I am not a doctor, but that is pretty damning evidence.  Maybe you need to consult with an attorney who specializes in malpractice.  You appear to have been put through a diagnostic nightmare.   I hope this helps.  Mothers need to take care of themselves first, so that they can help their children.  It is like the oxygen masks on an airplane.  Adults are instructed to put their mask on first before assisting others (e.g. children).        
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