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FranDaMan

Scalp Outbreak?

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I've been gluten-free for a bit over a year now. I rarely eat out and I do the shopping and food prep. Our house has also been "altered" to be gluten free. I am a DH sufferer and have been on Dapsone for a year now. Initial dosage was 100mg and it kicked the rash very quickly. After 5 months I stopped taking it to see if I was good to go or if it was still in me. (I'd only had one outbreak and was diagnosed quickly so maybe not too much buildup)It took 13 days for the dots to begin so back on the Dapsone but i cut them in half and that worked for the past seven months. I have several months supply and thought it was time to try to get off it again after the new year. So far the old areas (elbows, knees, etc.) haven't flinched. However, I now have many areas on the edge of my scalp that are breaking out like I have acne. Let me point out that it has been forty years since I experienced that! Anyway, they begin as hard bumps under the skin and then surface just as a pimple might but there is never a proper head for a pimple, no itching to speak of and no burn like in "proper" DH. I could get back on the program for a week or so and see if it magically clears up but wouldn't really know if that was it or not.

Anyone have this type of outbreak? I'm not really afraid of the Dapsone per se but if I don't need it all the time I'd just as soon not be taking it.

Thanks

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Have you made sure your shampoos, conditioners, hair coloring (if you use it) lotions, makeup etc are gluten free? Are you strict about CC issues? I refused the drug and it took a while for the antibodies to clear the skin but once I got strict with both stuff I injested and the stuff I used on my skin the outbreaks got much less frequent and eventually stopped.

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I've been gluten-free for a bit over a year now. I rarely eat out and I do the shopping and food prep. Our house has also been "altered" to be gluten free. I am a DH sufferer and have been on Dapsone for a year now. Initial dosage was 100mg and it kicked the rash very quickly. After 5 months I stopped taking it to see if I was good to go or if it was still in me. (I'd only had one outbreak and was diagnosed quickly so maybe not too much buildup)It took 13 days for the dots to begin so back on the Dapsone but i cut them in half and that worked for the past seven months. I have several months supply and thought it was time to try to get off it again after the new year. So far the old areas (elbows, knees, etc.) haven't flinched. However, I now have many areas on the edge of my scalp that are breaking out like I have acne. Let me point out that it has been forty years since I experienced that! Anyway, they begin as hard bumps under the skin and then surface just as a pimple might but there is never a proper head for a pimple, no itching to speak of and no burn like in "proper" DH. I could get back on the program for a week or so and see if it magically clears up but wouldn't really know if that was it or not.

Anyone have this type of outbreak? I'm not really afraid of the Dapsone per se but if I don't need it all the time I'd just as soon not be taking it.

Thanks

My dd had those bumps you described, on the backs of her upper arms. Keratosis pilaris (chicken skin) is what it looked like and they didn't itch. Two yrs later we found out she is gluten intolerant. Her head kept itching...wheat in her shampoo. She bought a new bottle...same thing. We got a wheat free bottle and no more itching. Sometimes around her hairline she was breaking out with pimples but she had wheat flour burritos those times...ugh...shes 18. She has no symptoms now that I know of.

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I second the shampoo comments. My scalp DH didn't go away until I stopped using shampoos that contain chemicals and what not.. even if they didn't say "wheat" on the label anywhere I had the same reaction. Now I use Desert Essence Organics Green Apple and Ginger gluten free shampoo... it smells amazing and my scalp is perfect!

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Just a follow up to my original post. I finally did kick the Dapsone. I have zero outbreaks (other than funny itches on the scalp). On the plus side I was diagnosed very quickly with DH during my first outbreak so it's not like I had the rash for years and built up all the antibodies in ridiculous quantities.

To be honest I was quite nervous about stopping it as the itching seemed to me equal if not worse than ivy and I'm unfortunate enough to find that at least once a year.

I'm also fortunate to live near Rochester, NY (if you exclude our marvelous winters) as there is a very active gluten-free community with stores and restaurants that "get it" and actually respond to our needs. Fortunately I'm not highly sensitive (since I wasn't breaking out or worse for a long period of time) but I'm still very strict on what I eat and where I eat.

Anyway, blemish free for about eight weeks so I think the diet has worked its magic.

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I'm also fortunate to live near Rochester, NY (if you exclude our marvelous winters) as there is a very active gluten-free community with stores and restaurants that "get it" and actually respond to our needs.

Could you be a bit more specific? For example I know PF Changs is safe at Eastview but what others are? Is the gluten free community you refer to the support group in Rochester? I plan to get out and about here very soon and it would be great to know some safe places to go.

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I live on the west side (Mumford) and spend a lot of time at Agatina's Restaurant in Gates. Not only do they have a gluten-free menu but if you select from the main menu they will check with the kitchen to see if it is naturally gluten-free or if they can alter it to be so. They also have for desert a gluten-free cholocate truffle with raspberry sauce that is to die for. Our favorite waitress knows now to pull a piece from the fridge when I'm halfway through dinner so it warms up before serving it. Nick's Deli and Pizza (also west side...Chili) has pizza shells, bread, cookies, pumpkin loaves, etc. as well as gluten-free pizza. I'm partial to the white version.

The Rochester Celiac Support Group is at: http://www.rochesterceliacs.org/ and they are very active. I've only attended three meetings as my work schedule just doesn't fit but they are an awesome bunch. Wegmans of course is really on board. They have recently remodeled the Natures Goodness areas (I think that is what they call them) and expanded the gluten-free area and better labeled it.

Hope this helps.

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I keep learning more and more every time I come here!

This caught my eye: Keratosis pilaris (chicken skin)

I have this! Never knew it had a name. Never thought to have it looked at or treated. I just thought it was my Irish skin :-) The back of my upper arms and my lower legs have it. It's not itchy. I've tried scrubs, lotions, exfoliation, salts, sponges.... nothing would take away the bumps. The skin on my legs is tight and not as bumpy as my arms but each follicle is bright red and it's unsightly to me. If you look closely at legs you'll see they are speckled with red dots.

However after being gluten free for 8 months and soy free for 3 my skin on my upper arms has gotten so smooth. There are some bumps but not nearly as much as there were. Just peeked at my legs and hmmm... no improvement there. Yet!

Maybe once it improves I might actually get a tan? Soak up some well needed vitamin D? (not sure if kp affects either - just thinking out loud)

Without getting too off track I came to the thread because my scalp breaks out all of the time. I have switched to gluten and soy free shampoos which seems to help. But sometimes it just flares up and drives me nuts, lasting more than a week. I use apple cider vinegar to curb the flakes and itching. I spray it on and rub it in before going to bed. I smell like a salad for a bit but then it fades. It seems to work pretty well. I'm still not sure if it's dandruff, dh or just dry skin.

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I second the shampoo comments. My scalp DH didn't go away until I stopped using shampoos that contain chemicals and what not.. even if they didn't say "wheat" on the label anywhere I had the same reaction. Now I use Desert Essence Organics Green Apple and Ginger gluten free shampoo... it smells amazing and my scalp is perfect!

Where do you buy this shampoo?

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I also have to be really careful with my hair products/lotions, etc. I have had great luck with Garnier Fructis and Dove products. Be cafeful at your hair salon b/c a lot of the high end hair products (usually used at hair salons) contain hydrolyzed wheat protein.

I'm also from the Rochester, NY. There are a ton of great resturants ... here's a list of them (http://rochesterceliacs.org/restaurants.htm). I always go to Dino BBQ, Simply Crepes, Distellery, PF Changs, Bone Fish, Chili's, Outback, Carrabba's, Five Guys, Chipotle with no problems at all. I also love, love Wendy's Chili (sometimes you just need something easy and quick). I also wanted to note the two great gluten-free bakery we are so lucky to have in Rochester. Donna Marie's www.donnamariesbakery.com and Eco Bella www.ecobellabakery.com. Oh yea, the pizza and baked goods at Nick's Pizza (www.nicksdeliandpizza.com)are amazing!!!

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    Sounds awful. My hit me a few days later this time. But I still feel the same three weeks later. Well, a little bit better as my headaches have worn off but I am still so dizzy and have numbness and tingling. It's so hard to concentrate. I feel horrendous but have been to the docs and hosp numerous times and they can't do anything.
    I sorta bump into walls a lot more, misjudge distances and hit my shoulder on door frames in a sort of totter fashion, catch myself almost falling sometimes on stairs, drop stuff, find I lose heat and cold sensitivity and often burn myself, or cut myself. These stick around for a while and slowly taper off. My ataxia normally hits hard the first day within hours of consuming the offending food I can lose full motor control and end up on the floor.
Thank you so much for your response. Do you get dizzy, well it's not dizzy, it's weird feeling where you feel like you are walking in space. And my skin just feels different, all nervy and more sensitive but not, like I can't feel as much.
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