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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Skin Issues
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29 posts in this topic

I've been having some major issues, and they may very well not be related to my celiac disease at all...I'm reaching. I have major amounts of itching, and nothing seems to help for much time at all. I itch so much that I'm tearing up my skin.

I don't know anything about DH, and I doubt that it's my problem since I'm reading about blisters and such and I just have some rashing and the wounds that I've caused myself.

Does anyone have the same problem? Or advice on what I can do? Please help.

filititi :(

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Hello-

I was having itchy scalp and redness and sort of a rash. . .it was nto fun at all. My hairdresser commented on it she goes "Does your shampoo have wheat in it?" Wow I thought. . .so I looked and it did! I stopped using it right away and my scalp is now fine. maybe you are using lotion or something that irritates you? that's all I have to offer. I am sorry to hear of your problem.

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I've had dermatitis herpetiformis since I was 15, now I'm 67 so I guess I'm pretty much an expert on itching. As for shampoo, I think I have developed an allergy to lauryl sulfate, which is in most shampoos. So I finally found one that does not contain lauryl sulfate. That is California Baby shampoo for sensitive skin. It is expensive, but only takes a small amount and really stretches a long way. As for the rest of the itching skin, I use a Kiss My Face lotion + when the itching really gets bad a cortizone ointment with aloe. Shirley Whitley

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Hi -

I agree, Shirley. This new board is going to take some getting used to, but I think I'm going to like it a lot. There are still, however, several features that I haven't figured out yet. B)

I mentioned my itchy scalp problem under the thread "How long have you been gluten-free and how are you feeling?". I won't repeat all the details here, just my question. Anyone know if salicylic acid is gluten-free? It's an ingredient in aspirin - a preservative and flavoring agent - and I think I read or heard somewhere that it is NOT safe for celiacs, but I can't remember the source. Anyway, after using Neutrogena's "Healthy Scalp" anti-dandruff shampoo only twice, my scalp began itchin' like crazy again. Neutrogena had e-mailed me a list of their gluten-free products and this shampoo is on the list, however, it contains 1.8% salicyclic acid. Salicylic acid is the active ingredient, the ingredient that's supposed to help prevent dandruff, but I'm wondering if it contains gluten and so only makes the problem worse for me.

I'm hoping that someone who reads this will have some info to share. Thanks!

Happy Day, everyone - Toni

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I have itchies caused by eating soy, which I am allergic to, and since I started back on gluten last November, in anticipation for a biopsy this month, I have itchy hands. The blisters didn't appear until about a week or so into the intense itchiness. Now the blisters are covering my left hand (back of hand and palm) and are spotty on the right hand. It feels like there are pins pricking my skin and it itches horribly. I have had blisters on my head before while on gluten, but now my head is covered with blisters and itches awful, and my neck and face are starting to break out.

Unless you are coming in contact with or ingesting a lot of gluten, I doubt that your itchiness is from DH and gluten, you may have an additional food allergy(or another allergy) that is causing your problem. Have you been checked by an allergist??

Good luck with stopping your itchies....

God bless.

Mariann

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Toni,

For those of us with DH, we should avod NSAID's like aspirin, ibuprofen and naprosin. It isn't that they are not gluten-free, for some reason they trigger a DH reaction. I found that out the hard way last year with a miserable root canal episode. When I went to my celiac specialist, I thought I had been glutenized and told him the meds I was on. That's when he told me that it was the ibuprofen I was taking (I was taking mega doses and it also caused temporary kidney problems!). He told me to stick with acetaminophen. (Too bad it doesn't work as well for me :(

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Lyn,

That's interesting about the NSAID's triggering DH reactions. I took Aleve for two years (almost daily) for my headaches and joint pain, and although I did have some DH on my scalp (along with the psoriasis) I never had it anywhere else on my body until I stopped taking the Aleve. I now think the Aleve caused a lot of the burning feeling in my intestine I had as I was trying to digest my food. And Tylenol does not work well for me either....

Mariann :(

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I really appreciate all of your help. You guys are great!

I'll check into my soaps and lotions. And I plan on seeing a dermatologist when I have insurance again (less than a month).

Thanks a bunch!

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Hello Everyone -

Mariann: How nice to hear from you on this new snazzy message board! I've been thinking about you lately, wonderin' how the gluten challenge is going and when your biopsy is. YOUR itchies sound quite uncomfortable. I hope your biopsy is REAL soon so you can start focusing on feeling way better. When is your biopsy? I'd like to know so that I can send you my warm thoughts and some positive energy that day. You've stuck it out and I sincerely hope that you get a definitive celiac disease diagnosis. I admire your courage, Mariann, and will be glad to hear when you go gluten-free for life!

As for me and my itchies...I'm beginning to wonder if I'm reacting to something else in my diet, although I don't know what it could be. I haven't eaten any dairy since I became a vegan in 1990. And I'm not eating any soy that I'm aware of. I'm not even eating much corn except for Cascadian Frozen Corn every now and then, although I'll re-check all my food labels. I've never seen an allergist.

Lyn: Thanks for the infor re: NSAID's. I'm curious as to what it is about them that can trigger DH. I'll definitely stay away from them from now on. Hmm...every time I think I'm beginning to get a good handle on this gluten-free lifestyle, something new pops up. Sounds like using a shampoo with salicylic acid was a poor choice for me. I tell ya, I have a bathroom full of body care products to give away! Fortunately, I rarely take over-the-counter pain killers, but it's very good to know not to take ibuprofen. Thanks so much for responding to my question.

Filititi: I've found that it's best to call or e-mail companies when it comes to body care products because the ingredients lists are SO long and who knows what half that stuff is? All of the companies I have contacted have been very helpful and have responded right away. I use Dr. Bronner's soaps. All of them are gluten-free! I like their choice of fragrances and the fact that it's concentrated, so a little bit goes a long way. I hope your itchies have calmed down!

It's so wonderful to be able to talk to people who can relate. Take care - Toni

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Ugh :( I feel like a moron. I've been sure to check every single thing that I've eaten, but it hadn't occured to me to check the things I'm using externally.

After reading the helpful posts of everyone on here, I checked what I'd been using...and I'll be darned, it was right there "wheat germ." This stuff I bought to stop my itching has been making it worse all along.

It really should have occured to me that that could have been an option, but I had no clue that someone would use the forbidden grain in my soap and lotion. :(

I gave the wheat infested stuff to my sister and I'll get some new stuff soon. Hopefully I'll feel better soon.

Thanks for your help everyone!

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Toni--salicylic acid IS the active ingredient in aspirin, I believe, so you should definitely switch products if you need to avoid NSAIDs!

Filititi--have you tried a thick, creamy body lotion (gluten-free, of course) on your rash? If it's not full-blown DH, it might respond to being moisturized!

I hope everyone is doing well!

--Sarah

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I'm trying a gluten-free body wash and some thick gluten-free lotion with aloe to make myself feel better. I've only started about 24 hours ago, so I'll have to give it time to see if it works.

I appreciate the great advice though!

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Along the lines of lotions, has anyone found a good healing lotion that is gluten-free and all natural?

I always used Aubrey Organics, but there line is not gluten free. My skin is sooooo dry since going gluten-free and milk free, never had dry skin too much before, but I do now! :(

Lisa

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Toni, don't feel bad. I did the same thing. I have eliminated all the internal gluten, but it never occured to me to ck the stuff that I use on my skin. ;) As always with this condition, we learn as we go.

Thanks for a great site and keep the good info coming. :D

Sharon

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:huh:So can anyone recommend a wheat free body lotion, that would be good for dry skin? My young son has very dry skin in the winter time, and additionally, when he has a food-reaction, even the following day his skin is still very dry and sore and itchy. I have tried a couple of things but they seem to make him worse or he cries because they sting him. The only thing I've used that doesn't make him cry is straight petroleum jelly, but that is so greasy, I only dare put that on him at bedtime, seeing as I don't really care if his pajamas get grease stained, if it will offer him some sense of relief and comfort. I sometimes feel so helpless and inadequate.

I do know that he reacted when I was using a shampoo with wheat in it. I believe the wheat shampoo contributed to a terrible case of cradle-cap that caused clumps of hair to fall out. (that and a vitamin deficiency that we've countered with a daily supplement.) So it is NOT only internal exposure to the offending foods that make folks react, in my opinion.

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MY son uses Lubriderm for his dry itchy skin. Also another thing might be is, Glaxal base. I did not call the company on that one but it is supposed to be pure. It's a base cream used for things like cortizone(sp) creams etc.

Tracy

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I use lubriderm without any problems, also, my hands get so bad they crack and bleed, then I'll put A&D ointment on overnight & wake up with new, baby soft skin. I also use it on diaper rash. works better than anything else I've tried. They also sell lubriderm bar soap, I just used it for the first time and LOVED it, no more scalling skin.

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Does anybody know of a gluten-free mainstream Body lotion for sensitive skin? Also a body wash? I have always blamed my lotions and bodywash for skin prone to breakouts but I wonder if it is because wheat was in them. I always seem to get little bumps on my stomach which ironically is where I start with my poof (sp?)

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I have found that when I have a dermatitis herpetiformis breakout, that PURE Tea Tree Oil applied 1-3 times daily, help it dry up faster, and helps control the pain/itching.

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Speaking of external sources.... When I had an annual TB test a few years ago, he nurse who checked the site commented on the redness around the site where the cloth medical tape had been used to keep the site sterile. wadda ya think ? A little wheat based adhesive? I have made sure now that I get the more transparent looking tape vs the cloth and haven't had any other problems. And of course the glue used on stamps and envelopes.

steve

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I know I've read that the glue on stamps and envelopes is NOT gluten free, but I was wondering exactly what it was that the glue is derived from that contains the gluten? ie wheat, oats, rye, or barley

I hope that doesn't sound like a silly question!

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Terri-Anne, I'm not positive about the source of envelope/stamp glue, but my guess is that it is wheat-based, sort of like the flour-and-water paste kids use to make papier-mache or like wallpaper paste used to be (and sometimes still is!). I hope this helps!

P.S. I turned around to check on what my toddler was watching on TV just in time to see a girl mixing flour and water to make papier-mache paste! Is that weird or what?

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I don't know if this will help anyone, but have you tried aloe vera. I am not sure what additives they put in the bottled stuff, but you could always get a plant and cut the stems and rub that on your skin. I don't have Dermatitis Hepetiformis, but it works wonders on sun burns.

Laura

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Laura, You're absolutely right about aloe vera. It works wonders on my skin. I also use, on the itchier spots, an aloe and 1% steroid ointment instead of the expensive stuff my doctor prescribed. Works just fine and only costs about $2 a tube as opposed to $60 a tube for the prescription. Shirley

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I am new to this board too...just posted for the first time a few weeks ago. Thanks for all the info and help. I have been celiac for about 5 years and also thought we (8 yr old daughter and myself) we doing pretty good. I have had a rash on my leg for 2+ years now and have gone to the Dr. about 4 times because it bothered me so much. Well, I finally just this week got it diagnosed as DH. It was my suspicion all along but could not get any Dr. to agree. Finally I got to see a specialist and had the biopsy done on Tuesday. He has put me on Dapsone...just wondering if anyone is or has taken it and what I need to watch for as far as side effects! I am taking 100mg once a day. I am very anxious about taking it. Had the pills since Tues and just took the first one last night! We have been gluten free for so long I really hoped I would not have to worry about DH too. Sniff sniff. Kinda overwhelming sometimes!!!

Anyway....let me know if anyone has had problems with dapsone!

Thanks,

Lynette

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