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Help!...oh, Please Help!

waterfront

By waterfront
in Dermatitis Herpetiformis

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waterfront Newbie
waterfront
Posted

Hi all,

This is driving me batty...

I went to my a new doctor and as she was doing a history and physical, i offhandedly mentioned I don't eat a bunch of things because they dont agree with me (bread, pasta, diary, soy, nuts...you get the picture). More important to me was I also get this rash on my scalp off and on for many years that drives me crazy when I have it. I'm not a big go to the Doctor person, so when she said she'd test for Celiac, I was floored.

For years, i've avoided the above foods. Not eliminated, I just make a concerted effort to not eat them because they bother my innards. In fact, the month before the appointment, I had further focused my efforts toward only veggies and lean meat and beans.

Since the appointment and reading about Celiac, I figured my test would be negative for Celiac given my essentially gluten lite and essentially gluten free eating one month prior the appointment and it was.

When I was at the appointment, guess what: no rash. Not one spot and no itching at all which is sort of rare for me. However, i've relaxed my diet since the appointment. I sort of figured I'd have to if I wanted to get a diagnosis...but now my scalp is super creepy-crawly, but no real rash is showing up. In fact, i'm creepy crawly more places than just my rash (which is atypical for me) now the sides of my face and my neck and upper shoulders are creepy-crawly. Creepy-crawly is sort of the precursor to itchy for me...if i itch when it's creepy crawly, then it goes straight to super itchy. If I ignore the creepy-crawly i can avoid the actual rash...sometimes.

(The rash itself is like pimply red irritated spots and clusters...my boyfriend once looked at my scalp and said "OH MY GOD!" when he saw what it looked like and he said it looked like pimples. I can only feel it, and it feels like big red welts that feel like they should pop. Most don't pop, but some do and get all crusty-like(sorry for the TMI!) I've had this off and on for 5+ years.)

Does anyone get this creepy-crawly stage? Or is this not a symptom associated with DH?

I feel like a fool because at this point i feel like i'm thinking myself itchy!!! I know that is a real possibility... I think i'm going crazy!

So a)does this sound like DH? (or not?) and B) can anyone out there help me to stop making myself feel itchy, because that's what I think i'm doing!

Any help appreciated!

Thanks for letting me vent...

Tanya

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rosetapper23 Explorer
rosetapper23
Posted

Yes, the rash sounds just like my Dermatitis Herpetiformis. The reason why the "Herpetiformis" is used to describe it is because it is herpes-like in that the skin tingles before the outbreak just the way herpes sores do. For me, after an outbreak, the tissue beneath the lesion hurts as well as itches. It's a very deep pain. When I've had them on the sole of my foot, the pain is so bad, I have had to limp because the muscles become painful underneath the lesions.

DH also crusts over and peels repeatedly, leaving a pink-purple scar in its wake. It can take a long time for a lesion to heal. You should avoid iodine for a while, too, until the rash completely clears. The rash for many of us needs both iodine and gluten for an outbreak to occur. Iodine can be found in seafood, asparagus, iodized salt and salty foods, and sometimes in dairy products (depending on where you live).

I'd say that, from your description of the rash and your past symptoms, you may very well have celiac. Only people with celiac have DH, so that's a pretty good sign that you actually have celiac.

waterfront Newbie
waterfront
Posted
  • Author

Thanks rosetapper23...i think it's pretty possible I do have it, but i don't know how much i want to pursue an actual diagnosis. I know many go without. The itching was just driving me crazy at the moment (it comes and goes) and I had to do SOMETHING. I was at my wits end. I'm more sane now. I think. :)

Best,

Tanya

Marilyn R Community Regular
Marilyn R
Posted

Oh, I feel so sorry for you waterfront!

I don't have much advice because I don't have DH, but I've read that it's important to get a biopsy and that the dr. (dermatologist or plastic surgeon) take biopsies from sites next to the lesions, not the lesion itself. I'd call tomorrow to get worked in, even if I had to go to a new doc. If you have any anti-anxiety meds, that may help. I wish you luck!

GottaSki Mentor
GottaSki
Posted

I've only had the rash once, but have had severe episodes of itching that last for several days to a month. It is enough to drive you MAD.

My severe itching episodes seem to be part of my body detoxing - except for one rash just before I was diagnosed with Celiac -- it is just severe, creepy, crawling itching everywhere from head to toe. Have had more minor itchy episodes as reaction while trialing some foods on elimination diet.

As I have no way of knowing what is causing yours, I can only offer hope that yours disappears very soon.

Oh -- and as I am hyper-sensitive to any medication and topical ointments...I found that if I add a half cup of baking soda to my regular epsom salt baths (take those to get my muscles/joints moving) it stops or at least lessons the horrible itching. I buy both baking soda and epsom salt in bulk now as I start most days off with a 15 minute soak to get everything moving and stem any itching.

Good Luck!

eatmeat4good Enthusiast
eatmeat4good
Posted

Hi and welcome. So sorry you are itching and hurting so badly. There is a pain relieving ointment by Walgreens called Pain Relieving Ointment for Boils. It is Lidocaine and it works great to stop the itching. Bactine spray also works great. Maybe for the scalp you should use the Bactine...it is more watery and not a greasy and thick as the cream. They both numb the itchy pain temporarily. Iodine is also in eggs and they cause my DH to react so you might want to visit thyca.com for a low iodine diet if you find out you also react to iodine. I did. I thought every food I ate was causing the sores...but it was gluten after all.

The testing is up to you but there is no treatment other than strict avoidance of gluten and limiting iodine. Some people take a drug called Dapsone but others including me have serious reactions to that drug.

It sounds like you found the answer and the way the DH appears according to your description is consistent with the way mine looks too. The way it feels in maddeningly painful and itchy. You probably have your culprit. I hope you heal fast but want you to be aware that DH is sensitive to tiny traces of gluten and you must watch for cross contamination very carefully. I hope you get some relief soon. Ice helps a little and so does the Bactine but they do take a long time to heal once activated. Best of luck.

squirmingitch Veteran
squirmingitch
Posted

Oh my dear Tanya, I feel for you, I really do. Yes, what you're describing is consistent with dh & therefore celiac. Yes, creepy, crawly, itchy, stingy before anything appears on your skin. And then OMG! I sit here typing after just having showered & washed my hair which almost has no crusts remaining in it. But I haven't itched in days. I got glutened about a month ago from some re-fried beans. Half my scalp was covered in large lesions, itchy, oozing & gross.

Going low iodine is imperative for me when this happens. For myself & many with dh, the low iodine will begin to calm the itch within about 3 days, then 5 or 6 days there is no itching & healing has begun. I bet if you went low iodine starting right now as well as being strictly gluten-free that you could keep those itchy feeling from becoming bumps.

Low iodine means no dairy, no egg yolks (whites are okay), no seafood, no ham, lima beans, turnip greens, strawberries, asparagus, broccoli, nothing with salt in it because iodized salt is so often used. Google thyca.com for low iodine diet.

The scalp lesions are the worst IMHO. They ooze & your hair gets stuck & matted in the dried stuff & it's just horrendous. You can't put band aids over it in your scalp. It's almost impossible to brush your hair. Ointment makes big greasy patches in your hair. It's so hard to deal with.

Personally, I will not intentionally gluten myself in order to get an official diagnosis. No way, no how!

I wish you speedy healing & no cross contamination!

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Di2011 Enthusiast
Di2011
Posted

My scalp has never been too problematic but I bet if you saw my hands/breasts then you might think scalp has some competition in the 'worst place' contest!! There isn't a place that I haven't had it (one exception: souls of my feet) so I've got a pretty good idea of where is worst for me. Scalp and hands are top of the bill. Breasts and butt come second. Most intensely itchy but easiest to deal with is the feet/ankles. At least you can hide these to some degree.

  • 2 weeks later...
dh mom Newbie
dh mom
Posted

Yes, the rash sounds just like my Dermatitis Herpetiformis. The reason why the "Herpetiformis" is used to describe it is because it is herpes-like in that the skin tingles before the outbreak just the way herpes sores do. For me, after an outbreak, the tissue beneath the lesion hurts as well as itches. It's a very deep pain. When I've had them on the sole of my foot, the pain is so bad, I have had to limp because the muscles become painful underneath the lesions.

DH also crusts over and peels repeatedly, leaving a pink-purple scar in its wake. It can take a long time for a lesion to heal. You should avoid iodine for a while, too, until the rash completely clears. The rash for many of us needs both iodine and gluten for an outbreak to occur. Iodine can be found in seafood, asparagus, iodized salt and salty foods, and sometimes in dairy products (depending on where you live).

I'd say that, from your description of the rash and your past symptoms, you may very well have celiac. Only people with celiac have DH, so that's a pretty good sign that you actually have celiac.

Hi, I just wanted to clarify something. Your last statement is not true. It is possible, albeit rare, to have DH and NOT have celiac. They are two separate autoimmune responses in the body. DH is carried genetically on very specific genes in the body. Most likely, a DH person has celiac, but one does not necessarily follow the other. I realize this is splitting hairs because you have to avoid gluten on both. Also, there are cases where DH can disappear in your 30's. Celiac never goes away.

  • 3 weeks later...
lulumonkey Newbie
lulumonkey
Posted

I have read that some shampoos have some form of wheat in them. My DH tends to come out on my face. We all seem to have our problem location, but if I were you, I would check my hair products just to be safe and not add fuel to the fire.

waterfront Newbie
waterfront
Posted
  • Author

You know, that is an interesting question. Hair care products. Over several years, I had tried a bunch in search of solving this scalp problem (prior to the concept of DH and Celiac ever entering my life)and came to the conclusion that I did not do well with anything with sodium laurel sulfate and a host of other common nasties found in soaps. It just seemed to exacerbate my itchyness...has anyone noticed that?

I now use the Jason brand dandruff shampoo and conditioner. It did seem to calm my scalp, and for a while (a few weeks) my scalp felt better. But it went back to it's normal level of constant low level itchyness and little spots of sores and the occasional whopper of a knot pretty quickly.

But upon inspection... guess what, my shampoo has wheat in it...i just looked!!! Argh.

I am still pre-diagnosis. I have my first GI doc appt coming up on the 6th and i've reverted my diet to eating gluten. I feel sorta lousy all the time. Tired, like I can't wake up...and so unmotivated. I just want to drink coffee all day and it doesn't help. I hate eating this way. I haven't eaten this way in years and I find it so hard, eating stuff I know doesn't make me feel good. Urgh.

As far as the shampoo goes, i'm not dying...so i'm not going to change anything until after my appointment.

Thanks for listening...and sharing.

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