Can Anyone Tell Me If This Looks Like Dh

[kellbeth]

http://s1060.photobucket.com/albums/t457/kellmull/?action=view&current=2012-08-04093031.webp

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I started getting these kind of rashes last May. They usually start of as one or more itchy bumps that resemble a bug bite and sometimes they will just go away or explode into this nasty looking stuff. They itch like crazy and take 3 plus weeks to heal. The left elbow however was more like 3 months. It popped back up in April this year and will start to fade and then get inflamed again. At the end of May my body exploded with these rashes on the back of both knees, right forearm, my back and right ankle. I noticed i was super itchy the day before and by the next afternoon i had those bug bite like bumps and the next day lesions. Derm didnt know what it was but thought i must have come in contact with something. She put me on steroids for 15 days. The rashes cleared but the very day i stopped taking them the left elbow popped up again. It is now worse than it has ever been and now have it on the right elbow as well. I also started getting itchy sore blisters on my hand since the steroids.

Side note: when rashes started last year i noticed alot of bloating and indegestion. In January of this year i started getting tingling and numbness and increased headaches.

[kellbeth]

http://s1060.photobucket.com/albums/t457/kellmull/?action=view&current=2012-08-04093031.webp

Open Original Shared Link

I started getting these kind of rashes last May. They usually start of as one or more itchy bumps that resemble a bug bite and sometimes they will just go away or explode into this nasty looking stuff. They itch like crazy and take 3 plus weeks to heal. The left elbow however was more like 3 months. It popped back up in April this year and will start to fade and then get inflamed again. At the end of May my body exploded with these rashes on the back of both knees, right forearm, my back and right ankle. I noticed i was super itchy the day before and by the next afternoon i had those bug bite like bumps and the next day lesions. Derm didnt know what it was but thought i must have come in contact with something. She put me on steroids for 15 days. The rashes cleared but the very day i stopped taking them the left elbow popped up again. It is now worse than it has ever been and now have it on the right elbow as well. I also started getting itchy sore blisters on my hand since the steroids.

Side note: when rashes started last year i noticed alot of bloating and indegestion. In January of this year i started getting tingling and numbness and increased headaches.

Sorry I am new to this .....If you click on the link at the very top it will take you to all my rash pics. Not all of them got on my post.

[Hopeful1950]

Your pictures look like DH to me. The fact that it is presenting on your elbows (a location that is mentioned quite often in the medical literature) could be a clue as well as the extreme itchiness and your gut symptoms.

If it is DH, steroids will only provide relief when you are taking them. It comes back with a vengeance as soon as you stop the medication. Almost like it is waiting for the meds to be over so it can pop out again.

There is a skin biopsy that can diagnose DH, but you must be still consuming gluten for the test to even stand a chance of being diagnostic.

I'll defer to the other members of the forum who will chime in with lots of good information for you. They know more than most doctors!

Good luck.

[itchy]

Kellbeth, it certainly is plausible that it is DH, especially considering your gastrointestinal symptoms. That said, it isn't as severe or stereotypical as my rash was. Have you compared your rash with the many photos online?

Your rash appears to be intensely itchy, bilaterally symetrical, found often on elbows and and limbs, reddish. Those are all characteristics. Many of us also have hard centred scabby lesions, circled by brilliant red to purple blotches. Most people can't endure the stinging and scratch the lesions, which usually produce blood or a thin bloody fluid. They can take months or years to heal. Bilateral symetry is apparently a characteristic of auto immune diseases like DH, so that would be a good indicator.

But there are several variations that still appear to be DH. Perhaps your rash is a variant, or perhaps it will progress to something even more miserable.

Most of us don't regret going strictly gluten free. For me, I was instantly rewarded by an end to my GI problems, and after three years my DH is almost gone too!!

[eatmeat4good]

The blisters can present as flesh-colored or red/purple and I see both in your photos. You also have the excoriations from scratching which are consistent with DH as well as the welting up of areas where you have scratched. People often report that it is impossible not to scratch and that the scratching causes intense burning sensations. Clusters of blisters appear to be present as well as areas where it is widespread. The knees are a common site for DH. Our DH photo bank may help you. Look at some pictures there. In my opinion, your rash is consistent with DH. It is very similar to the outbreaks I got on my legs, although I most often got the DH rash on my face and forehead, with both the flesh colored blisters and the reddened/purplish ones.

We have had some people post pictures of their rashes lately that are very similar to yours. Although they had not been diagnosed, they had the rash and gastrointestinal problems of long duration. With both of these factors being consistent with Celiac disease, it is a reasonable thing to suspect.

Read around the DH forum, view the DH photo bank, and feel free to ask questions.

Thank you very much for posting your pictures.

[squirmingitch]

Kell, welcome to the club none of us wanted to belong to! Lately this club seems to be experiencing a population explosion.

Hopeful gave good advice. I would add to that it is nearly impossible to find a derm who will consider dh let alone biopsy for it. If you DO get one who will then they better be experienced in biopsy procedures for dh. If you don't care about getting an official dx then just go gluten free. BUT, if you decide later that you want a dx I warn you that after having been gluten free (gluten-free) & then going back to eating gluten for testing --- almost everyone has MUCH stronger reactions to gluten than before they went gluten-free. AND the false neg. rate on correctly done biopsies of dh run over 30%.

Plus, I will add that going gluten light before testing will likely result in a neg. test. People think they can go gluten-free or gluten light & then "gluten up" the last week or few days or day before the tests --- that won't work. You have to have been fully glutened for at least a couple of months. And if any doc tells you otherwise then RUN as fast as you can b/c you will be wasting your time with that doc.

Celiacs with dh tend to test neg. on the blood panel --- I think b/c the antibodies are in our skin. Also tend to be neg. on the endoscopy b/c dh'ers tend to have patchier damage to the villi -- again b/c the disease is attacking our skin. Oddly enough though we have a slightly higher chance of developing Lymphoma than celiacs without dh.

The bloating & indigestion is what I got & those are the GI issues. The numbness & tingling I also got but then those got much, much worse as time went on & I didn't know it was celiac. Those are the neuro issues along with the headache.

Read threads on this dh forum as well as on the board in general. The dh forum will help you understand dh & what you can do to help relieve or live through the itching. One thing right now though. Get rid of the iodized salt!!!!! No sea salt either! Get plain salt; it will say "this salt does not supply iodine, a necessary nutrient". Iodine makes dh go crazy!!!! We usually have to go low iodine to help it to lay down. I think itchy is the only one I've ever heard who says iodine does not affect his dh. It is medically recognized that iodine makes the dh insane. Here is a link for a low iodine diet:

Open Original Shared Link

Here is a link to get you started with going gluten free:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Ask questions anytime. We are here for you. I'm sorry you got this crap. I'm sorry any of us got this crap. BUT we are survivors. The gluten-free diet is not bad at all once you get used to it. Seriously!

[itchy]

Squimingitch, there have been a number of people who have stated they didn't associate iodine with any effect on the DH. Because a number of vocal people say it is so, or even various studies identifying a statistical association doesn't make it so for every individual.

Low iodine diets are a risk for some people. Furthermore, I am proof that DH can be conquered without paying any attention to iodine.

I agree that it is worth experimenting with, but people who don't feel they want to reduce iodine shouldn't feel their situation is hopeless. Iodine is not a causal factor in DH, only an aggravating factor for some people. The cause is gluten.

[eatmeat4good]

Dr. Peter Green writes in his book, Celiac,a Hidden Epidemic, on the topic of Dermatitis Herpetiformis and an Iodine connection. He says there appears to be an intimate connection between DH and iodine.

"Often the dermatitis herpetiformis will not improve- and flare-ups may occur- unless iodine is minimized or eliminated from the diet. This includes iodized salt or salty food (pretzels, chips,etc.-gluten free of course), and different forms of seafood. Sushi may be a real issue due to the high amount of iodine in seaweed. After the dermatitis herpetiformis lesions have resolved, iodine may be reintroduced to the diet."

It is clearly established in the medical literature.

Thyca.com is a low iodine diet not no- iodine.

Some people literally need to limit iodine.

[squirmingitch]

Itchy, I did not say she HAS to go low iodine! I said & I quote: "We usually have to go low iodine to get it to lay down". Okay, you say there have been a number of ppl who have stated they didn't associate iodine with any effect on the dh. Fine, I'll take your word for that --- you have been here longer than I & may very well have read ppl saying that. But you have to admit that the # of ppl who have found iodine IS a factor in their dh is far greater than the # of ppl like yourself. Now, I do not feel I would be doing the op any favor w/o throwing the iodine factor out there. The op is a grown adult & can make her own decisions but I would certainly hate for her not to know about iodine & go along being gluten-free & finding no resolution IF iodine were a factor for her but she didn't know about it. Then she's likely to think, "well, I guess gluten wasn't my problem b/c this rash is still making me crazy". AND as far as doing away with iodized salt goes --- that will not hurt anyone. We get enough iodine these days w/o needing it in our salt. Just b/c you have an overwhelming fear of thyroid issues b/c of your family history does not mean that all of us should say mums the word on the iodine issue & never mention it. Got it?

[squirmingitch]

Dr. Peter Green writes in his book, Celiac,a Hidden Epidemic, on the topic of Dermatitis Herpetiformis and an Iodine connection. He says there appears to be an intimate connection between DH and iodine.

"Often the dermatitis herpetiformis will not improve- and flare-ups may occur- unless iodine is minimized or eliminated from the diet. This includes iodized salt or salty food (pretzels, chips,etc.-gluten free of course), and different forms of seafood. Sushi may be a real issue due to the high amount of iodine in seaweed. After the dermatitis herpetiformis lesions have resolved, iodine may be reintroduced to the diet.)

It is clearly established in the medical literature.

Thyca.com is a low iodine diet not no- iodine.

Some people literally need to limit iodine.

Thank you eatmeat!

[itchy]

Squirmingitch, please go back and reread the thread.

I did not at any point suggest people shouldn't reduce their iodine if that's what works for them.

However I object to the constant statements by some that iodine reduction is absolutely necessary to deal with DH. It's not.

Surely the experience of most people here is that 'experts' don't have all the answers, and that there is a lot of variability of circumstances and physiology that must be taken into account.

As for the level of iodine that people need to be healthy, please understand that I do not consider you an expert. Even.

[itchy]

Eatmeatforgood: If you read my comments you will understand that they don't contradict the quotes that you posted. Note the use of 'some'in the quote.

[squirmingitch]

Squirmingitch, please go back and reread the thread.

I did not at any point suggest people shouldn't reduce their iodine if that's what works for them.

However I object to the constant statements by some that iodine reduction is absolutely necessary to deal with DH. It's not.

Surely the experience of most people here is that 'experts' don't have all the answers, and that there is a lot of variability of circumstances and physiology that must be taken into account.

As for the level of iodine that people need to be healthy, please understand that I do not consider you an expert. Even.

No one on this thread said iodine reduction is absolutely necessary. And I haven't seen that made as a constant statement.

And I don't consider either one of us an expert.

[itchy]

Then we're agreed.

I respect the vast amount of knowledge you bring to this conversation.

[squirmingitch]

Agreed itchy!

And I DO appreciate your experience with this beast we battle!

[kellbeth]

Thank you all for the comments and info!

I had blood work done a little over a week ago and heard back Saturday that it was negative. The nurse said "Its negative so you DO NOT have Celiacs" I requested to have the tests mailed to me bc im not sure what all the panel included and want to make sure bc my dr office obviously doesnt know much about Cealiacs. I think I read on this forum that if you have been on oral steroids in the last couple months test results can be wrong. Is that true? It had only been 5 weeks since i had stopped when my blood was drawn. I was hoping for some definative answers bc no one in my family has a known histery of Celiacs or Gluten sensitivity but no one has been tested either. There are however lots of autoimune diseases and IBS like symptoms and a few have been diagnosed with psoriasis. I guess I will just have to go Gluten-Free and see

[eatmeat4good]

Smart girl! It is quite common for people with DH to test negative on the blood panel. For some reason, our IgA antibodies are in the skin and may not show up in the blood.

It is also quite common for people to discover they are Celiac when there is no family history of Celiac disease. 1 in 133 people have Celiac and 90% are undiagnosed, though they may have suffered for years,so it is quite possible that you could have a hereditary disease that no one in your family has been diagnosed with....yet. If your Dr. says you do not have Celiac, you are right to go gluten free and try to find out for yourself. Many here are self-diagnosed because they were unable to get a positive test result on blood or biopsy and yet, they feel better off of gluten and they heal.

[squirmingitch]

Yes, Kell, the steroids skew the tests but as eatmeat said --- those of us with dh often test neg. on the blood & on the endoscopy too. And even if you found a derm who would consider dh then you would have to wait for those steroids to be fully out of your system before you got a biopsy of the skin.

We're here to help anytime.

[kellbeth]

Yes, Kell, the steroids skew the tests but as eatmeat said --- those of us with dh often test neg. on the blood & on the endoscopy too. And even if you found a derm who would consider dh then you would have to wait for those steroids to be fully out of your system before you got a biopsy of the skin.

We're here to help anytime.

I am a little upset that the tests came back negative especially knowing now that the steroids could have made it falsy negative, mostly bc I had hoped to have something to take to family members so they would not have to continue to suffer. I am on day 2 of Gluten-Free and my elbows are much less red today

You mentioned in an earlier comment that you too had neurological issues. Would you mind expounding on them for me? I thot about starting a new thread but wasn't sure where to put it. I would be curious to see if you or others have experienced the same thing as me so I have a better idea if mine is being caused by gluten. At first I was worried about MS and my mom was worried I was getting Gillian Beaur bc she had it back in 93. Luckily for me it doesnt seem to be either one of those. My nuero doesn't know what it is but he did actually suggest trying Gluten-Free for a while at my last visit after I showed him my elbow and mentioned the previous rashes and stomach issues. He thot it looked like psoriasis. Actually I was scratching like crazy that morning and by the afternoon the skin colored bumps appeared and then the lesions.

[squirmingitch]

Sure Kell. And when you're done reading mine it would be a good idea to put neuro in the search box for the site & you will come up with lots of threads b/c we are, of course, not all the same. Eatmeat had some neuro issues too & I'm sure she will be on to tell you of hers.

And before I forget ---- if your family members are willing --- it would likely be easier for one of them who does NOT have rash & has NOT been on steroids to be tested. As I said before, those of us with dh test neg. on the blood more often than those celiacs who do not have dh.

First --- I'm 55 now & these things began I guess around 50 or 51. My neuro issues began with my hands & feet feeling like there were needles or the feeling you get when a limb falls asleep & when it begins feeling again you get those needle feelings. From there, I got what everyone (my hubs & friends) told me was carpal tunnel from being on the computer too much. My wrists & hands would get sooooooo painful & would sometimes swell up & become red as fire in places. It could get so bad I couldn't use my hand. Even something as light as a kleenex touching my hand would send me into screaming pain. I couldn't even hold a fork. My feet would get that way too. Thankfully I never had both feet going at the same time so I could hobble around on one foot. But I would sometimes have both hands at the same time. it was sheer hell. Try pulling your shorts down to pee ---- Arrrrrgggggghhhhhhh!!!!!!!!!!!!!!!!!!! These times would last anywhere from a day to 3 or 4 days & then it would just up & go away sometimes in the space of a few hours. No pain killers helped. Not Tylenol, Advil, or even opiate prescription pills. Nothing helped an iota. Heating pads didn't do it. Ice packs only would allow me to sleep when I got the place so freaking cold I was undoubtedly doing tissue damage to the skin b/c I got it so cold I went numb but I didn't care. It would feel like you had a broken bone with no meds --- that was the severity of the pain. Then it began affecting my lower legs below the knee & then my shoulders, & my hips --- ohhhhhhh, the hips --- they liked to do it both at the same time, & I began to get it in the back of my neck, my upper arms, from elbow to wrist but not the elbow or the wrist just in between, & then below/under my shoulder blades & between shoulder blades & also there & the back of my neck I got what felt like a toothed clamp feeling like battery cables are toothed & it felt like one of those was clamped on me. I drug more parts of me around than you can imagine. And it wasn't predictable. One thing would clear up & I might go a week or even two & then something else would fire up or maybe only a day or 1/2 day would pass before some other part of me fired up. I went to a spine specialist ortho & he ordered an MRI of all 3 sections of my spine plus something like a CT scan type thing of your bones where you drink this radioactive stuff & then they measure & take pictures of how it travels through your body & it glows on the monitor screen --- they did that I guess with & without contrast. Also a complete bone scan for bone loss. The spine specialist said I have DJD & arthritis in my shoulders, & I do have some spine problems --- he put it as "the jelly is squishing out of the donut". He said no PT or exercise or anything would be of any help. He wrote a script for epidurals & wanted me to go see this neuro specialist. I got the epidural & it helped but not enough so I got a second one & it made things much better. I never went to see the neuro guy b/c I was told the 1st test would take 8 hours --- well, that I would be there for a full 8 hours --- they do something then you go wait then they do something then you go wait etc.... & we had a lot going on in our lives right then & we ended up moving to the other end of the state a few months later before I had done the neuro guy. The spine specialist did seem to think most of my problems I was experiencing were neuro induced rather than SO much spine induced. He is a really good spine guy too. But I'm not too hot on docs. I've had some events earlier in my life which have led me not to trust docs too much. OH! And my right lower eyelid would drive me insane twitching!!!!!! For about 2 years.

Anyway, that was all in late 2010.

I did have another epidural up here in early Feb. of this year b/c I started to have some of those things happening again during 2011 & I was afraid it would all become too much again. BUT I will tell you that the signs I lived with have been steadily clearing up since going gluten-free. A lot of little signs that I used to have all the time, even after epidurals, have been going away. I'm not healed yet but I now know that a lot of the stuff I thought was caused by DJD was actually neuro from gluten. It remains to be seen just exactly how much is spine & how much is neuro & how much will ultimately heal but I keep remembering the spine doc & his face & I saw something in his face that told me better than words that he knew something else was going on in me & doing most of this stuff. I wish he would have been blunt & said so but you know docs --- they don't ever feel they need to give you explanations --- you're just supposed to blindly trust them & do what they say. And I had made that mistake before in my life when I went to 6 OB/GYN's over 4 years telling them my symptoms & was outright ignored & told I was fine only to end up in the ER getting 2 pints of blood one Sunday & a hysterectomy where a uterine fibroid that weighed 28 oz. was removed along with my uterus. That was 6 docs that failed me. I learned to only trust myself & my instincts.

[kellbeth]

Sure Kell. And when you're done reading mine it would be a good idea to put neuro in the search box for the site & you will come up with lots of threads b/c we are, of course, not all the same. Eatmeat had some neuro issues too & I'm sure she will be on to tell you of hers.

And before I forget ---- if your family members are willing --- it would likely be easier for one of them who does NOT have rash & has NOT been on steroids to be tested. As I said before, those of us with dh test neg. on the blood more often than those celiacs who do not have dh.

First --- I'm 55 now & these things began I guess around 50 or 51. My neuro issues began with my hands & feet feeling like there were needles or the feeling you get when a limb falls asleep & when it begins feeling again you get those needle feelings. From there, I got what everyone (my hubs & friends) told me was carpal tunnel from being on the computer too much. My wrists & hands would get sooooooo painful & would sometimes swell up & become red as fire in places. It could get so bad I couldn't use my hand. Even something as light as a kleenex touching my hand would send me into screaming pain. I couldn't even hold a fork. My feet would get that way too. Thankfully I never had both feet going at the same time so I could hobble around on one foot. But I would sometimes have both hands at the same time. it was sheer hell. Try pulling your shorts down to pee ---- Arrrrrgggggghhhhhhh!!!!!!!!!!!!!!!!!!! These times would last anywhere from a day to 3 or 4 days & then it would just up & go away sometimes in the space of a few hours. No pain killers helped. Not Tylenol, Advil, or even opiate prescription pills. Nothing helped an iota. Heating pads didn't do it. Ice packs only would allow me to sleep when I got the place so freaking cold I was undoubtedly doing tissue damage to the skin b/c I got it so cold I went numb but I didn't care. It would feel like you had a broken bone with no meds --- that was the severity of the pain. Then it began affecting my lower legs below the knee & then my shoulders, & my hips --- ohhhhhhh, the hips --- they liked to do it both at the same time, & I began to get it in the back of my neck, my upper arms, from elbow to wrist but not the elbow or the wrist just in between, & then below/under my shoulder blades & between shoulder blades & also there & the back of my neck I got what felt like a toothed clamp feeling like battery cables are toothed & it felt like one of those was clamped on me. I drug more parts of me around than you can imagine. And it wasn't predictable. One thing would clear up & I might go a week or even two & then something else would fire up or maybe only a day or 1/2 day would pass before some other part of me fired up. I went to a spine specialist ortho & he ordered an MRI of all 3 sections of my spine plus something like a CT scan type thing of your bones where you drink this radioactive stuff & then they measure & take pictures of how it travels through your body & it glows on the monitor screen --- they did that I guess with & without contrast. Also a complete bone scan for bone loss. The spine specialist said I have DJD & arthritis in my shoulders, & I do have some spine problems --- he put it as "the jelly is squishing out of the donut". He said no PT or exercise or anything would be of any help. He wrote a script for epidurals & wanted me to go see this neuro specialist. I got the epidural & it helped but not enough so I got a second one & it made things much better. I never went to see the neuro guy b/c I was told the 1st test would take 8 hours --- well, that I would be there for a full 8 hours --- they do something then you go wait then they do something then you go wait etc.... & we had a lot going on in our lives right then & we ended up moving to the other end of the state a few months later before I had done the neuro guy. The spine specialist did seem to think most of my problems I was experiencing were neuro induced rather than SO much spine induced. He is a really good spine guy too. But I'm not too hot on docs. I've had some events earlier in my life which have led me not to trust docs too much. OH! And my right lower eyelid would drive me insane twitching!!!!!! For about 2 years.

Anyway, that was all in late 2010.

I did have another epidural up here in early Feb. of this year b/c I started to have some of those things happening again during 2011 & I was afraid it would all become too much again. BUT I will tell you that the signs I lived with have been steadily clearing up since going gluten-free. A lot of little signs that I used to have all the time, even after epidurals, have been going away. I'm not healed yet but I now know that a lot of the stuff I thought was caused by DJD was actually neuro from gluten. It remains to be seen just exactly how much is spine & how much is neuro & how much will ultimately heal but I keep remembering the spine doc & his face & I saw something in his face that told me better than words that he knew something else was going on in me & doing most of this stuff. I wish he would have been blunt & said so but you know docs --- they don't ever feel they need to give you explanations --- you're just supposed to blindly trust them & do what they say. And I had made that mistake before in my life when I went to 6 OB/GYN's over 4 years telling them my symptoms & was outright ignored & told I was fine only to end up in the ER getting 2 pints of blood one Sunday & a hysterectomy where a uterine fibroid that weighed 28 oz. was removed along with my uterus. That was 6 docs that failed me. I learned to only trust myself & my instincts.

Sorry for not getting back to you sooner. Thank you for sharing with me, squirmin. Wow it sounds like you have really been through alot. I have only had the nero symptoms for about 8 months now, well i had one episode last July where my face and both arms got pins and needle, but it was mid Jan this year that neuro symptoms came on. Mine are nothing compared to yours, just mostly bothersome and dont usually keep me from going about my day. I think I atleast have youth on my side. Well its fading fast as i am 28 now

I think I will start a new post to tell the full story bc I couldn't find any recent posts. I think I will put it in the pre-diagnosis, symptom catagory. Thanks again for all your help