Another Newbie: Could This Be Dh?

[pennyhofstadter]

Hi,

I'm brand new also to the boards after lurking & learning for several days. It's been a huge help - thank you!

I'm 36 and I feel I have some sort of gluten intolerance, and probably have for most of my life. I've been "diagnosed" as having IBS since I was 19 and have been off/on antispasmodics since I was around 6. I've also had migraines since I was about that age and stomachaches/pain/cramping and non-traditional bowel habits for as long as I can remember.

I'd pretty much given up hope in the medical community helping and accepted my normal, but for this crazy rash! I've always had rashes and weird breakouts, but I've had a continuous rash on my shins/calves/ankles for 6 years. I've seen 2 dermatologists and a handful of doctors and it's "eczema" or "psorasis". But, the medications (strongest group 1 steroid ointment/cream, antibiotics, antifungals, and oral steroids) don't touch it and over time it spread and got worse. I also have it on my wrists, elbows, and occasionally other places.

I could write a book, but I'll spare you at the moment. My a-ha moment after was going on a low-carb diet, I was able to sleep thru the night without waking 3x to scratch. Arms cleared up and legs cleared up a little. Then "cheating" the diet with pizza and it flaring again. Cheated again, and having a terrible GI reaction and flare.

Do you mind taking a look? Thanks soooo much!

Currently:

Newest "patch" - very small blisters forming:

At a bad flare in March:

[eatmeat4good]

Penny,

Welcome! Oh that looks painful and miserable but thank you for posting pictures.

This is just my opinion.

Yes, your rash/sores look like DH.

The first two pics are the consistent with what the rash looks like in the latter stages of healing. Some people describe them as presenting like bug bites, or mosquito bites.

The third and fourth pictures clearly show raised edges on the lesions which is also consistent with DH.

The dark purple discoloration where healing has taken place is also consistent with DH. When total healing occurs you can have hyper-pigmented spots or de-pigmented spots that appear totally white where the lesions once were.

The fact that it responds favorably to being gluten free and the fact that it is intensely itchy especially at night are both consistent with DH.

Have a look at our DH photo bank.

Your long term history of migraine and "IBS" make the diagnosis almost seem a certainty. Again this is only my opinion.

You can ask your Dr to refer you for a biopsy if you want testing. A biopsy taken from the clear skin will diagnose Celiac if there are IgA antibodies in the skin.

Another clue to the fact that that it is most likely DH is the fact that steroids did not solve the problem. DH will only totally heal if you are strictly gluten free, though it is known to come and go in cycles or to heal for brief periods of time.

Do some reading on the DH forum. Ask questions anytime.

If you choose to fore-go testing, the rash will eventually heal if you are strictly gluten free. Some of us have to limit iodine for a while for the lesions to heal. There is a benzocaine pain relieving ointment by Walgreens that helps the stinging and itching temporarily. Solarcaine can help too. Thanks for posting your pictures.

[rosetapper23]

I agree completely with eatmeatforgood! The photos really look like DH, and your description is consistent with this type of rash....also, since it has responded previously to a gluten-free diet (low carb), I think you have your answer. However, if it IS DH, then what you have is true celiac, not just gluten sensitivity. Many of us here on the Forum have, in fact, forgone the testing due to a high incompetency rate among dermatologists (and I mean it!). Unless you have a real need for an "official" diagnosis, I'd recommend that you adopt a completely gluten-free diet and also eliminate iodine for a few months. You will feel so much better!

[squirmingitch]

Well Penny, I absolutely concur with what eatmeat & rosetapper said! I think IMO you have dh & that means you have celiac disease. And OH! You poor, poor thing! I can see all the scars from previous, repeated outbreaks! All 3 of us have been there.

At this point, since you are displaying what I believe to be dyed in the wool dh; then the blood panel for celiac will probably not be of any help to you. We with dh often test neg. on the celiac blood panel b/c the antibodies are in our SKIN. We also tend to have patchier damage on endoscopy however with the length of time (since age 6) that you have had it, you might display enough villi damage to show. But the long & short of it is that it can be darn hard for us to get an official dx. Biopsies of an area adjacent to the lesions can give a dx of dh but like rose said --- there is a high incompetency rate among derms & that's IF you can even convince one that they need to biopsy for dh. You've already been down the derm road enough to know that haven't you?

I will heartily echo rose's next to last sentence!!!!!

Welcome to the board!

[pennyhofstadter]

I am so relieved. I really have been hopeful to feel like I might have answers. I'm struggling with a diagnosis because I'd like to have it and I am strongly considering having one or both of my children tested. My daughter has some symptoms even now and was quite the colicy refluxy baby and my son had some mysterious constipation issues as a breasted baby, which is very unusual. Son has eczema but tested negative to a skin allergy test to wheat. ????

I have been trying very hard to be gluten-free for 2wks now. I've has atleast 1 exposure to a fast food salad, but otherwise done well. My family is very supportive and I have 4 friends who are/have celiac family members. They've been very helpful. I have a positive attitude about the diet because IT'S WONDERFUL to finally have a stomach that doesn't hurt. I didn't realize HOW MUCH it did hurt until it stopped. I don't need to bring up unexpected bathroom accidents! I'm sure most of y'all have been there.

I almost just want a positive test to tell my jerky docs over the past 20 yrs, THIS is what's been going on. But otherwise I don't know that I need it. I'm nervous of getting a false negative since ive been low gluten for 4 months and gluten-free for 2 wks. I'm getting names of good doctors in my area (SC, US) since the GI I loved retired.

Any opinions on the stool tests? I've read mixed reviews.

Off to learn more!! THANKS SO VERY MUCH!

[squirmingitch]

Hate to tell you this but EVEN for the skin biopsy for dh you MUST be eating gluten!!!!! And many doctors don't know this nor that for the blood or endoscopy you HAVE to be eating gluten. Gluten to the tune of 2 or 3 months the equivalent of 3-4 slices of bread per day. NOW, I will also say that many ppl who have gone either gluten light OR gluten free have much stronger reactions when they start eating gluten again & a lot can't make it b/c of those reactions. Just letting you know here. And that's why so many of us are self dx'd too; especially those of us with dh.

Great that you know other celiacs. And that your family is supportive!

I really can't speak on the stool tests but it seems mainstream docs don't use them at all. None of the celiac organizations list them as valid celiac tests either. Soooooooooo....... Maybe someone will come on & be able to give you more/better info. on those.

Ask anything, anytime, anywhere on this board.

[squirmingitch]

Penny, search here & post here for a doc in your area.

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

[JaneWhoLovesRain]

Good gosh!! Penny, your legs looks so much like what my hips and arms looked like back in April. My biopsy for dh came out negative but I still don't believe that I don't have dh. I agree with you - I also want a postive test so I say to the doctors see, I told you so, especially to the one dermo who told me I couldn't possibly have dh because that doesn't itch!!!!!

[itchy]

I agree with the others, it certainly looks like DH!

In my opinion, unless you have some overpowering need (perhaps legal) for a formal diagnosis, forget the need for confirmation by doctors. So far, four of the five doctors I've used were completely lacking competence (well really most of them were aggressively unhelpful, even antagonistic to the idea). And the fifth simply agreed after examining my evidence acquired online that I was almost certainly correct. What he would have come up with on his own is uncertain.

Once you are strictly gluten free for a while, I predict you will be so certain that your self diagnosis is correct, that you won't need outside confirmation.

I find I need to be extremely strict about consuming gluten, but gluten on my skin or breathed in don't have any effect I can detect.

[itchy]

BTW, some of the MD's I encountered were so egotistical and cynical that you couldn't shame them by giving them cut and dried evidence, once they've made up their minds. I'd save your energy for something more likely to yield rewards.

[Hopeful1950]

Oh man. Your pictures look like me a year ago. I really feel for you.

Regarding the stool tests: I did the EnteroLab testing because my blood tests came back negative (as is common with DH). I ordered the package that tests for gluten, casein and also does genetic testing. What I really wanted was the genetic testing because I wanted to find out if I even have the genes that predispose to celiac. My intestinal antigliadin antibody was elevated and they recommended going strictly gluten free permanently. My genetic testing indicated that I had TWO celiac genes. I took the results to my doctor (who believed it was DH all along) and he agreed with the lab's recommendation to go gluten-free. He stated that having two predisposing genes, along with the elevated antigliadin antibody, along with the appearance of my rash warranted going gluten free for at least two years to see if I could clear it up. His opinion was that I have DH and that because I had gone undiagnosed for about 7 years it would likely take a minimum of two years to get the antibodies out of my skin.

I am now at the two year mark and the horrible rash (like your pictures) is 95% better. I am still struggling with the skin damage that many years (pre-diagnosis)of scratching and using steroid creams have caused.

[pennyhofstadter]

Thanks so much everyone! I find your posts so encouraging! I have so much to learn.

I've been gluten-free minus fine tuning it and one slip up of a breaded chicken strip, for 2.5 weeks now. I feel like my legs have slightly improved. Is a big improvement from 8 months ago.

I'm still itching and it's pretty regular, so I am thinking its nothing I am eating NOW, but just having to work itself out? Does that seem true?

I don't know what I want to do with the medical diagnosis. I have so much doubt when it comes to them in this regard after all the years. I don't want to be seen as following a "fad" even though my legs and body is a mess. I'm strongly considering the mail in tests and would love to hear more experiences. I cannot thank you ALL enough for all of your help and kindess. It has meant so much to me.

New pic : 8/6/12

[squirmingitch]

Yes, Penny, it just has to work itself out of your skin. You must be extremely vigilant though about not getting glutened or cc'd. Every time you do it will make the "end date" farther out. Now, even if you were squeaky clean gluten-free for 6, 8, 10 months ---- dh can still present whenever it darn well feels like it. Until it's all out of your skin you may go in & out of dh outbreaks BUT generally, the longer you go w/o getting cc'd the less severe the outbreaks will become & they will not last as long. It can take 2 years or (gulp!) even longer for all the IgA to get out of your skin. And dh is terribly sensitive to the tiniest amount of gluten.