Does This Look Like Dh (pics)

[curiousgeorge]

Does this look like DH? I'm going to try and post pictures but I'm not sure I know how. I'd appreciate thoughts.

[ravenwoodglass]

Yup, thats what mine looked like.

The best person to tell you for sure though is a dermatologist. They can biopsy the area next to the rash and look for antibodies.

[Lisa16]

Yes. They will itch and hurt and the same time. I have a picture of mine on my blog about lipstick and you can see they are like these too. Get a biopsy and you will have a diagnosis!

On the happy side-- I used to get these all the time and they could pop up ANYWHERE on the body. I used to be terrified it would get my eyes. I have been gluten-free over a year now and I have not had an episode since the photos on the blog. Hurray! I think it is GONE.

However, I am pretty sure that if I get a serious glutening, it will pop up again.

Lisa

[curiousgeorge]

Yes. They will itch and hurt and the same time. I have a picture of mine on my blog about lipstick and you can see they are like these too. Get a biopsy and you will have a diagnosis!

On the happy side-- I used to get these all the time and they could pop up ANYWHERE on the body. I used to be terrified it would get my eyes. I have been gluten-free over a year now and I have not had an episode since the photos on the blog. Hurray! I think it is GONE.

However, I am pretty sure that if I get a serious glutening, it will pop up again.

Lisa

How do I find your blog?

Is there a good way to select a dermo?

This is a better picture. I have had this sort of a rash for years and years but just sort of ignored it. I'd have my hubby scratch my back every night. I always thought it was just acne becaue I could never see it. I went to a new doc and he tesed me for celiac on a blood panel last spring. had wildly postive blood work and an endo that had scalloping of the folds but just showed increased lymphocytes on the actual biopsy but no gross villi damage. I have been gluten-free for close to a year. I was glutened this was what happened amongsted other things. I am pretty sure its DH and DH fits the puzzle. I`d really like a firm dx which nobody seems willing to give me. I`m in canada and can claim the gluten-free food off my taxes and I can`t without firm dx.

IMG]http://i568.photobucket.com/albums/ss126/curiousgeorge65/DSC_5384.webp

[Lisa16]

The blog is at the very bottom of the left hand box under the personal photo on my page (click on my user name). My photos are not as good/ clear as yours are, but you can see the blisters. (I took it of myself). The best one is in the sunlight, I think. They look just like shingles blisters nut the occur differently and do not stay on one side or follow a nerve path the way ahingles does.

Here is the funny thing-- I was actually diagnosed through DH. I kept getting "shingles" according to my doctor. By the third time, he sent me to a dermatologist who looked at it and said, "you know, that doesn't look like shingles to me." I had had a positive blood test many years before then, but it was misinterpreted and I was not diagnosed at that time.

I think if you go in, having already had the diagnosis through bloodwork, and say-- "I think this is DH. Can you biopsy it to see?" they will do it. Or else they will just treat you for it straight away.

It is a miserable thing.

I have read it can take two years or more for the antibodies to clear out of the skin and that you can get outbreaks during that time. In my case (thank goodness!) it seems to have left in about a year.

Good luck!

[curiousgeorge]

Its funny because I've had it for years but the latest batch is WAY worse itch wise than anything I've had before. I'm wondering if its like the whole gut reaction that gets worse if you get glutened after going gluten-free.

I'm going to ask for a ref to a dermo. I'm just worried it will take ages and it will be gone before I get to see them.

I looked at your pics. They do look more like what I have than what I've found on-line.

[Lisa16]

In my experience, DH is dificult to photograph. What tends to happen is that the red, irritated popped blister sites predominate, plus the blisters pop easily. I have had them form and pop within hours of being glutened. And if somebody has had it chronically for a number of years, say, then there is scarring (kind of like acne scarring in the sense that there is discoloration of the site.) And in some light the blisters just look like red open wounds.

Yes-- I do think the reaction gets worse. My last glutening involved new symptoms like nausea (on top of the multiple bouts of D). But hopefully with time it will be just a bad memory for you too!

Lisa

[GrandmaK]

Does this look like DH? I'm going to try and post pictures but I'm not sure I know how. I'd appreciate thoughts.

Curious George,

I want to thank you for posting the pictures. It really helped me understand that what I have on my face is in fact DH. I am really new to the idea that I have a gluten sensitivity to thank for my symptoms. All the sites that talk about rashes are so difficult to understand.

I am at the point, as you or Lisa have explained of having scarring. its gone on for YEARS. I have been to the dermatologists tons of times over the years. But without the digestive issues its been hard to diagnose.

I just started on a gluten free diet. But I am thinking that my cosmetics may have it. I have seen no change on my face.

Thank you again for posting pictures.

[curiousgeorge]

You know, I had it in my hair and I always thought it was acne. I had it back at 12 years old. I'd scratch and pick at it. I even remember my friends mother looking at my head and asking why the heck my head was scabby. I never made the connection until relatively recently.

On the upside, I told my doc that I really wanted/needed a firm dx. I asked for a referal to a dermo and he said he'd dx me celiacbased on my crazy ttg levels. So there I am, I finallly have a formal dx of celiac.

[sugarsue]

CG, this is exactly what my daughter's (age7) bumps looked like. The dermatologist said they were moluscum. However, they only responded well and went away when she went gluten free (cleared up within 2 months). Our dermatologist said he would have recommended a biopsy if she was not a child, but since we were going to do gluten free anyway, he'd forget the biopsy for now. If they ever come back, I'm going to get a biopsy.

Anyway, good luck!

[curiousgeorge]

Intersting. My friends twins had moluscum and their bumps were smaller than what I get and not really inflammed or blistered. They were more on the surface vs errupting from below, if that makes sense. It sounds like your DD likely has DH esp if gluten-free makes it better.

[sugarsue]

Intersting. My friends twins had moluscum and their bumps were smaller than what I get and not really inflammed or blistered. They were more on the surface vs errupting from below, if that makes sense. It sounds like your DD likely has DH esp if gluten-free makes it better.

I went back and looked at your pictures again and this is really exactly what her bumps looked like. She would have pearly bumps too that were typical molluscum. I wonder if she had both. She had huge eruptions though like you say that would be inflamed and blistered like you describe. I guess the big test will be if they come back if she ever eats gluten. She does not get a reaction if she is accidently glutened and she can eat sauces with no trouble that cause my other dd a huge reaction. Anyway, thanks for your post!

[curiousgeorge]

Pearly, yes that is exactly what the twins bumps looked like. They kept passing it back and forth between each other and went to the dermo and had them treated. They mostly had it on their faces and upper chest. I suppose location is also part of the key? Mine defintaly have a clear fluid in them and are popable (gross I know).

It sounds like maybe both and with your DD. Did they treat her for the molluscum?

[Fiddle-Faddle]

Yup, thats what mine looked like.

The best person to tell you for sure though is a dermatologist. They can biopsy the area next to the rash and look for antibodies.

Unless you get the awful dermatologist I had--he told me that it didn't matter that I had already been gluten-free for a month, and that it didn't matter that I'd been on prednisone for 10 days. Then, when the results came in, and my IgG was STILL ridiculously high, he said that my results were normal and that celiac had been ruled out.

On the other hand, I think he did me a favor--I'd rather NOT have a firm dx, as insurance companies can use that to deny you coverage.

I make breads, pancakes, and cookies from scratch, so I don't really spend on special gluten-free items except for gluten-free flours, which I buy in bulk. I spend probably $300-400 on gluten-free flour. Add up packs of gluteny cookies and bread over a year, and it probably comes close to that. What I don't get refunded for is my time. But I figure a healthier diet (more veggies, rice, and potatoes, and much, much less processed garbage) is priceless, right?

[bunnybaby]

Wow thanks for those Pics and info. I have been gluten free except for mistakes for 9 weeks but I have as well as all my other symptoms had skin like this for years and in my hair since I was about 10. In the last 2 weeks it has been dreadful on my face and I think it is an increase in reaction to my slip ups.

I have always scratched these which has never helped but the itches and pain are to much to resist. I have never been able to get across to my doc that it is not like acne - which he diagnosed years ago.

I do not if I will get a diagnosis of celiac due to having bloods after giving up wheat and getting a clear result but at least I know.

Thank you and I hope that yours improves with time gluten free.

[sugarsue]

Pearly, yes that is exactly what the twins bumps looked like. They kept passing it back and forth between each other and went to the dermo and had them treated. They mostly had it on their faces and upper chest. I suppose location is also part of the key? Mine defintaly have a clear fluid in them and are popable (gross I know).

It sounds like maybe both and with your DD. Did they treat her for the molluscum?

The doc said it was better to let the molluscum resolve on it's own and would only do the "bug juice" if they were not resolving. Hers were mostly on her legs (inner thigh, backs of knees and also her bottom).