Lupus Of The Skin

[Gad Girl]

Has anyone with Celiac had a problem with rash on forehead - doesn't itch - much - but looks awful. The rash gets worse with stress and then "calms" but never goes away. My derm. said it was lupus of the skin - don't remember the long technical name. But, I'm suspicious that it is related to Celiac. I've tried everything I know (except the steriods he prescribed) to no avail. Thanks for any helpful info.

[ravenwoodglass]

Has anyone with Celiac had a problem with rash on forehead - doesn't itch - much - but looks awful. The rash gets worse with stress and then "calms" but never goes away. My derm. said it was lupus of the skin - don't remember the long technical name. But, I'm suspicious that it is related to Celiac. I've tried everything I know (except the steriods he prescribed) to no avail. Thanks for any helpful info.

I just did a quick search using the words celiac and lupus and gluten and lupus. There is actually quite a bit out there on the subject including articles that refer to the misdiagnosis of lupus that was in reality gluten related. There are also articles that talk about having the symptoms of lupus go into remission on the gluten-free diet. Has your derm done any biopsies to look for DH antibodies in the skin next to the lesions? Also you may want to go super strict on the gluten-free diet for a bit, including all topicals like lotions, makeup, shampoos etc. If the skin reaction is gluten related it can take a long time for the antibodies to leave the skin, up to 2 years, and even a tiny amount of gluten injested or applied will keep these lesions active. Don't loose heart with the 2 year figure, I had severe skin lesions when diagnosed and although for the first couple years I had a lot of outbreaks after going gluten-free they lessened almost immediately and would heal much more quickly. Gluten enteropathies can cause autoimmune reactions in any of the bodies organs. Doctors are just now starting to realize that celiac is much more than just a GI disorder and that it does have a strong link to many autoimmune issues.

[wowzer]

I'm glad you brought this up. I have had a dry itchy patch on my forehead that is reddish. It doesn't seem to go away no matter how much moisturizer that I use. Also Ravenwood's reply makes sense to me. I haven't been officially diagnosed with DH, but I am sure that is what I have. I have been gluten free for 18 months now. I do still get little really itcy small bumps. I have had so many positive results going gluten free and no I can't go back to gluten.

[ravenwoodglass]

One last thing, your doctor did tell you to avoid the sun right? The best way is to use clothing that is specifically designed to act as a sunblock. At the very least you should be wearing a hat with a wide brim but ideally you should also have the rest of your body covered. The thought of wearing long sleeves, a hat and pants or full length skirt may seem idiotic when it is 90% but the companies that make many of these articles build in vent systems that make them really cool to wear. Folks with the skin form of lupus will at times even react to sunlight through windows so try to be viligent. If you are concerned about vitamin D formation, which needs sun, just 10 minutes of sunlight on even a small area like your hands is enough.

[Gad Girl]

I just did a quick search using the words celiac and lupus and gluten and lupus. There is actually quite a bit out there on the subject including articles that refer to the misdiagnosis of lupus that was in reality gluten related. There are also articles that talk about having the symptoms of lupus go into remission on the gluten-free diet. Has your derm done any biopsies to look for DH antibodies in the skin next to the lesions? Also you may want to go super strict on the gluten-free diet for a bit, including all topicals like lotions, makeup, shampoos etc. If the skin reaction is gluten related it can take a long time for the antibodies to leave the skin, up to 2 years, and even a tiny amount of gluten injested or applied will keep these lesions active. Don't loose heart with the 2 year figure, I had severe skin lesions when diagnosed and although for the first couple years I had a lot of outbreaks after going gluten-free they lessened almost immediately and would heal much more quickly. Gluten enteropathies can cause autoimmune reactions in any of the bodies organs. Doctors are just now starting to realize that celiac is much more than just a GI disorder and that it does have a strong link to many autoimmune issues.

[Gad Girl]

Many thanks for your reply. I had recently decided to go through all the topical products (including shampoo, which I hadn't thought about before). I'm ok with the the 2 yrs - it is totally worth it to feel and look better and live longer. I did have a biopsy on the lesion, but I just wasnt convinced that the pathologist wasnt looking for what he had already decided I had. I just wasnt satisfied and felt "dismissed". I have searched for some holistic methods to help clear up the rash and while no miracle, I have been using a bar soap made with manuku honey that seems to "calm" the rash. It has also worked great on my daughter's ance. Who knew?

I was diagnosed about 18 months ago; I'm 49 yrs old and like so many others had lived with all kinds of "reasons" for my symtoms. A caring female internist and I came to an understanding that I was not going to leave her office until we found out what was wrong with me because I knew something was - despite all the years of tests that came back negative. The happy ending was finally knowing what was wrong and that I could "fix" it. I felt better after 3 days of gluten free and have continued to get better and better and lost tons of weight (another misconception is that all celiac folks are thin and dont eat; i just ate more because I was never satisfied and was so used to the pain that I thought it was normal). My daughter, who is 14 now, had also lived with a "stomach ache" her entire life. We had been to ever specialist in Atlanta and the ER on more times than I care to remember, all to be told "there is nothing wrong with her, she just has a nervous stomach". She is now feeling wonderful and has become a walking talking testament to "get tested", which has caused more than one misunderstanding - smile. I'm still trying to get my 81 year old mom to get tested or at least go gluten free anyway. I know she'll feel tons better. Thanks to all who share what they find that works for them!

[ravenwoodglass]

I am so glad to hear that things are going well. One last note, you mention that the derm biopsied the lesion that you have, (or had hopefully). If he biopsied the actual lesion he was clueless or not looking for DH. The DH test requires biopsy of the tissue adjacent to the lesion. That is where they will find the antibodies. If the actual lesion is biopsied the results will be negative. I am happy to hear that you have checked all topicals, that will help a great deal. Be sure to check out the thread on the gluten free makeup in the products section, if you haven't already. They have some great stuff and the sample sizes are wonderful for folks to play with.

[Mariela]

Has anybody heard of a rash that looks like little blisters deep in the skin that itch only occasionally?

I have had this in my right hand since I was about 8 or 9 years old, from the middle of my wrist lined up to the end of my middle finger, another "line" on the out side of my hand, and another line or branch towards my thumb. This has expanded throughout the years and only once a year I would say that it is very itchy. It looks like deep blisters that pop out ot the skin, but they never actually bursted or anything like that. I have pinched them, no liquid in them. I have cut them with nailclippers, but they grow back.

Now it's spreading not in line any more but randombly in my right hand and since two years ago, two or three blisters on my left hand. It just spreads but generally does not itch.

I have no idea what it can be, since I never showed it to any doctor, and no cream (antifungal or antibiotics that I tried topically) has worked.

It may not be related to Celiac Disease, but there are so many disorders that can be linked, may be one of you has this also and did not think it was important. I just would like to know what it is.

Thank you everybody for writing, it is so comforting finding that other people have the same or similar problems and things going on related to Celiacs, it makes me feel that I am not alone in this.