This Itch Is Driving Me Crazy !

[JaneWhoLovesRain]

Oh my, I never heard of dh until about an hour ago . . . .

Brief background - I've been eating 98% gluten free for about 2 years, not because I have celiac but because I developed a problem with vertigo and constantly feeling motion sick even when sitting still. I frequent the Meniere's web site and many people there with similar problems found relief when giving up gluten. I gave it a shot and found it helped, not 100% though but I am doing better.

I never had skin problems until last December when I got what I thought was a bug bite on the back of my neck. Very slowly, over a two month period it spread to cover most of the back of my neck, intense itching. Two weeks ago I went to the doctor and he said it was lichen simplex chronicus and prescibed hydrocotrisone valerate. It has helped the inflammation somewhat but hasn't helped the itching at all.

But what has suddenly happened over the last two weeks is that this rash has quickly appeared on other parts of my body, first both elbows, then the sides of my hips and then behind my knees and now my back is starting to itch. I thought it was so odd how symmetrical it appeared. And the itching is severe, I feel like I am going to lose my mind. I was thumbing through a medical book looking for pics and happened to come across the term derm..herp. When I read the symptoms I was shocked at how close they are to mine, especially with the typical places the rash is located.

As I said above I am about 98% gluten-free. There probably is cc and even though my cereal (Arrowhead Puffed Rice) is sold in the gluten-free aisle nothing onit says gluten-free. I drink rice milk and have been told that is not gluten-free.

I need your input - can dh start very slowly as mine did? It took 2 months to grow from a dot size to cover a good part of my neck, but in the last two weeks it has really grown and spread. Most descriptions describe it as a "watery" rash. Mine is not watery but I do have crusty centers. I'm going back to the dermatologist on Tuesday - anything special I should do or say. And if in fact my problem is gluten (which has never been proven) could a rash develop several years after having no problem in this area and even after being pretty much gluten free?

[ciamarie]

Looking back, I realized that I'd had at least 2 outbreaks of DH on my upper chest area many years ago, and then it went away. It basically looked like small blisters, with some patches that looked really dry and were itchy. Then many years later I got it on my face, and that didn't go away 'til I stopped eating wheat. Though I still didn't know it was DH, and it was anxiety and paying attention to how I was affected by what I ate that led me to realize I had an issue with wheat. When I had it on my face I thought it was some weird adult acne, since it resembled acne but there were again dry itchy patches too. However, generally afaik (since I'm not an expert....) there will be something resembling blisters or acne or maybe just raised bumps. And I now have it behind my knees.

I think the biggest clues with what you described is the location, and the itchiness sound very much like it could be DH. It may be something in addition to gluten sort of triggered it, it seems to involve a sensitivity to iodine, and in my case also a sensitivity to MSG.

If you're going back to the dermatologist, he (or she) may be inclined to do a biopsy, which would have to be done right next to a 'fresh' outbreak, from what I gather. Even then, it appears that there's a good percentage of false-negatives with the biopsy. Afterwards, you might want to go on a strict gluten-free diet, as well as a temporarily reduced iodine diet (go to the thyca.com website to get their pdf diet file...) and see if that helps.

[rosetapper23]

It certainly sounds like DH, and if it is, then you definitely have celiac disease, which is at the root of many (if not all) of your ills. As the poster above mentioned, you'll need to cut way back on iodine until you get a handle on this rash, and you'll need to be extremely stringent about following a gluten-free diet. You can certainly get a biopsy if you wish, but I personally have a very low opinion of dermatologists and their competence level. If the rash gets better after you eliminate gluten and iodine, you have your answer.

[squirmingitch]

Oh Jane it surely sounds like you have dh. In fact I would lay money down on that one in your case. And dh means celiac. To get it to go away you have to be STRICT gluten free. And ciamarie has good advice too.

And in answer to your question in your last paragraph ~~~~ YES!

I'm getting shivers just thinking about what you're going through. Been there, done that! Witch hazel helps. Shower with the coldest water you can stand ~~~ hot water aggravates it & makes it itch worse. Bactine, Walgreen's pain relieving cream, Orajel all have Benzocaine in them ~~~ it's the best for stopping the itch.

(((HUGS))))

[JaneWhoLovesRain]

Thank you so much for your responses. I'm shocked to think I might have celiac. Nothing is sure at this point though. My first thought when I was reading about dh in the medical encylopia last night was, my gosh, this describes my rash, symmetrical, very itchy and my second thought was when I read that it is usually related to gluten was, well I guess this can't be my problem after all because I have been gluten-free for two years. But while I don't eat obvious food that has wheat, there is most likely cross contamination.

Rosetapper, I also unfortunately have a low opinion of most doctors in gereral, after going through all the vetigo problems I've had in the last 4 years. It's unfortunate, isn't it? When I went to the dermo two weeks ago he spent about 15 seconds with me and quickly diagnosed lichen simplex chronicus. What I didn't realize at the time is that this is a seondary disorder and there must be an initial itch that created the problem. Worse, LSC is usually diagnosed in people who are anxious or depressed and I know once one has that as a label it is hard for the doctor to see anything else.

Ciamarie, I didn't know about iodine, I'll have to look further into that. I eat very low sodium, so I'm not getting any iodine from my salt intake. I'll check the website you mentioned.

Squirmingitch, oh your name so describes how I feel, lol!! I hope my dermo visit goes well on Tuesday and hope to heck he doesn't tell me I just need to give the ointment more time to work.

Jane

[ciamarie]

Thank you so much for your responses. I'm shocked to think I might have celiac. Nothing is sure at this point though. My first thought when I was reading about dh in the medical encylopia last night was, my gosh, this describes my rash, symmetrical, very itchy and my second thought was when I read that it is usually related to gluten was, well I guess this can't be my problem after all because I have been gluten-free for two years. But while I don't eat obvious food that has wheat, there is most likely cross contamination.

I very much understand feeling shocked when thinking you may likely have celiac. After it sunk in for me, I keep wishing I'd have known long ago. I even had a co-worker several years ago that had celiac disease, and she suggested I may have it also. When she told me about needing a GI biopsy for a dx, I said 'no thanks'. I could have just tried a gluten-free diet anyway, but nooo.... I thought I was ok with spelt (and rye) and very rarely a nice piece of cake with wheat flour.

Ok, I got sidetracked. I did want to add that avoiding wheat as an ingredient is important, but that alone isn't being gluten-free. There are some foods that may not have wheat, but they do have barley (malt), or other gluten ingredients so you're still possibly getting gluten. There's a link at the top of the forums with an FAQ that has some helpful links, some of which are for safe and unsafe foods. Just FYI.

[rosetapper23]

I agree that there are MANY products that contain gluten that you may be unaware of: lipstick and other cosmetics (and shampoos, etc.), supplements, medications, oats (unless certified gluten free), frozen hash browns, condiments, soups and broths, chips, etc. Also, it is important to know that for many people, once they go pretty much gluten free, they become much more sensitive to even the slightest contamination. This could be why you developed neurological problems like vertigo in addition to the rash during the time that you tried to be gluten free. I've been gluten free for eight years, but even the smallest amount of contamination causes me to break out in DH and have dizziness, headache, and joint pain. You have to understand that NO amount of gluten is acceptable for people who have celiac. Regardless of whether your incompetent dermatologist makes a diagnosis of DH or not, believe me--you will feel 100 times better when you completely eliminate gluten. If you have a favorite aunt who wears lipstick and kisses you, you'll need to start offering her your cheek; if you have a significant other who drinks beer or eats sandwiches, you'll need to have that person brush his teeth thoroughly before kissing you; and if you have kids who eat gluten...you get the point.

Also, if you have DH (and I think you do), you'll need to avoid personal products that contain gluten because you can touch them and then touch your mouth. Most products, unfortunately, do not state whether or not they contain gluten. Dessert Essence Organics shampoos and creme rinses are all gluten free as are the products sold by EO (they all state that they are gluten free). Even though the official information on DH states that external gluten cannot cause a reaction, there are many of us here on this forum who have experienced DH when simply touching it. There has not been enough research done on DH for the scientific community to make such blanket statements. Instead, the experiences of those who actually have DH may offer more insight on how to deal with this disease.

I sincerely hope that you'll be able to avoid gluten in the future, because I predict that you're going to have a very healthy life from this time forward.

[eatmeat4good]

You are probably reacting to cc now.

Your gluten lite diet helped keep from getting super sick.

But now the antibodies are in the skin and the DH rash develops.

I had DH for years without knowing what it was.

It is terrible..just as you describe.

Doesn't have to be watery but if you keep eating gluten it can become that way

Mine started as bug bite type bumps and progressed to all out blistery DH

It took many months to heal.

DH is very sensitive to any gluten CC or traces of gluten.

Watch your iodine.

Some people have to limit it

Go to thyca.com to find low iodine diet and follow both gluten free and low iodine until you heal.

good luck.

Just so you know- traces of gluten can cause a reaction that lasts for weeks.

That has been the case with me

Congratulations on finding us!

[Ryniev]

Starting in July, my first bump was on my bottom. I thought it was a spider bite or something and actually went an accute care clinic and was given a topical steroid. Then I started getting them all over and thought my house was infested with bugs. I couldn't figure out why no one else was being attacked. Then I realized it was October and all the bugs were pretty much dead. I thought maybe I had fleas bites from my dog. Then they started spreading to my knees, elbows, upper back arms, then feet, then my neck and finally even my face. They would itch so bad and if I scratched they'd pop open and just bleed. I went to the dermatologist and said they were hives and gave me prednisone and a steroid cream AND a sedating antihistimine so I could sleep. I'd wake up every 1 1/2 hours itching so intense that I couldn't stand it. NOTHING helped. Went to Internal Med M.D. and got more prednisone AND xanax so I could sleep. After a positive skin biopsy in early Feb have been gluten-free for almost 4 weeks and although I'm still pretty itchy, I'm having less "blood spots" and can shave my legs without bleeding or wanting to throw up from the pain.

I now refer to myself as Spotted-American because of all the scaring which I hope will eventually go away. I'm tired and achy still but sleeping a little better. I have been using an aloe/apple cider vinegar concoction with Whole Foods Mint lotion (it's cooling and gluten-free) along with the orajel someone suggested. I smell like a minty salad, very sexy but hey, it helps me sleep.

I hope you get relief soon and just know, other people here really do know how it feels.

[JaneWhoLovesRain]

Thank you so much for your responses. It seems hard to believe that a tiny speck of gluten can cause so much problems. But then again, so can 1 bee sting to those that have that allergy, same with peanuts.

The rash seems to be spreading more, I can't wait to go to the doctor Tuesday, I only hope it is a productive visit. Ryniev, sounds like your visit(s) to your doctor were very unproductive. I also thought initially I had bug bites. I was just looking up differential diagnosises with DH and see scabies is a possibility, my gosh, the pictures look so similar and the the itch of both is unbearable and causes insomnia. I pray that isn't my problem.

Jane