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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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misslexi

Does This Sound Like It Is Caused By Gluten?

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My mother has an extremely painful 'rash' on her hands that is now occasionally spreading to other parts of her body. The dermatologists cannot find a cause or diagnose it. They have done all sorts of allergy testing, including all the products she works with. No reactions to anything at all except I think she had a very mild one to nickle.

Originally creams and steroid creams helped clear it up, but as its gotten worse the only thing that helps now is taking prednisone. Which causes a whole boatload of it's own issues. She does have a cream recommended by one of her doctors that relieves some of the symptoms though, with no medications in it so she can use it as often as she likes. I got mad at her before for using steroid creams more often than she was supposed to.

She gets water blisters on her palms, and on her fingers (palm side and sides). Now it is kind of just this giant mess of pain. Her skin will split and her hands are extremely dry no matter what, she can barely open her hands flat and when she does, its painful to do. They scale up pretty bad, and are swelling alot. She hasn't been able to wear her rings in a long time now because they are so swollen. Her hands also radiate heat like little ovens.

It used to clear up a bit on it's own, and then come back. But now it will only clear up with the steriods.

She had the celiac blood test, but she was negative. I had it too and I was negative, but I had been gluten free for some time already. (the doctors insisted it didn't matter.) I have a clinical diagnosis of celiac, but no biopsy results because none of my doctors would listen and told me it was in my head. I was half way to dying before my rhumatologist just told me to go gluten free and get better.

The thing is, I spent the summer with her and my family and she was mostly eating what I ate, aka gluten free. Her hands weren't too bad at all and they would get bad, clear up, get bad, clear up. She was feeling better overall by eating less gluten. Now in the last 3 months she has been eating wheat again frequently and her hands are extremely bad.

They just say it must be eczema but we don't know why. It is also occuring slightly on her feet. She currently has a spotted rash on her back, that looks more like hives (but that may have been caused by some antibotics they had her try recently to clear up her hands). Growing up she always had this painful rash on her legs. It was spots that would bleed, but probably because they were so itchy she would itch in her sleep. Again, absolutely no reason for it and it went on for years. Thinking back now, the rash on her legs may have gone right around the same time as her hands started up. And her hands are so itchy she can always find something to rub them on, and does it without even knowing it.

Does this sound like it could be caused by gluten, and is there any tests they can do to find out if it is? Besides the blood test or a biopsy on her intestines?

Besides the rash, she has stomach troubles, and nasty spells that sound like what some people have described here. Last only minutes, dizzy, her world kind of just stops.

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Definately sounds like your mom is reacting to something she is eating, or perhaps touching.....plants even. Is she eating spices like cajun salt? This broke my hands out with raised red bumps under the skin. All I did was boil crab legs in the water with the salt. I had what I thought were moles on my back that would come and go which have completely left since being gluten-free. She could be reacting if she is coming into physical contact with wheat and her body cannot tolerate the wheat. All possibilities to think of.

The dizzy spells may or may not be related. If it is only for a little bit of time and she isn't having any sinus or cold issues, I would guess she is reacting to a something she is taking in. Unfortunely the list of itemms it could be is pretty long.

I can only speak for myself, we all tend to be but different with our symptoms here. Somethings that effect me immediately and will give a spinning feeling for 3 days are guar gum, high fructose, and carrageenan. Gluten will make me off-balance all the time for 3+ weeks.

Testing is not real reliable. Since she tested before, my thought is just to try a gluten-free diet and see if there is any improvement. Keeping a jouranl would be very helpful so she could look back and see what she ate that might be giving her issues. Dairy and soy are a couple more foods that could be giving her issues.

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She is lactose intolerant, so very little dairy. Some lactose free milk in her tea in the mornings. Occasionally some cheese. My brother is even less tolerant of lactose than her, so they no longer have dairy in actual meals very often anymore.

I have dizzy spells, she has...don't even know what to call them. But you can tell immediately that she is having one. It is far more severe and even potentially dangerous...

She barely touches plants, and not alot of spices in the house. Nothing uncommon anyways.

Thing is, she works with her hands. So right now she cannot work at all...shes an aesthetician, thats why they allergy tested all of her products. And none of the ones she uses regularly have wheat in them as far as I know.

Everyone is at a loss as to whats causing this. I'm positive stress isn't helping, her hands get bad and cause stress which makes them worse etc. And another family member has been having health complications which hasn't helped anything for anyone. I think it might be difficult to get her to really commit to going completely gluten free...she didn't go through what I did, that has made me stick with it. Thats why I was wondering if anyone had a similar skin condition that cleared up with going gluten free...to help show her that other people had similar problems and they got better with it.

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You know, you both could very well be gluten-intolerant and there's no test for that. And its often just as bad as any "official" Celiac diagnosis. The only difference is that a true Celiac can say they have a specific disease, where we intolerant folks can't. "Intolerant" gives the impression that its not serious, when in fact it can be just as nasty. And gluten-intolerant can't write off gluten-free food costs on our taxes, like those that are official can!! Other than that....you gotta just decide that when something you eat gives you problems when you eat it and those symptoms get better when you don't.....as the old joke goes, "Well, then don't DO that!" :) But you can talk till you are blue in the face and until they (given they are adults) decide to accept this is their problem, you are talking to the wind. I know a couple of people that I KNOW BEYOND A SHADOW OF DOUBT that they are at least gluten-intolerant. But I have talked to them a number of times, given them information and they choose to just whine about having gut pain, joint pain, foggy mind.....etc., instead of doing anything about it. They think going gluten-free is just too impossible and they'd miss those foods. Well, I miss those foods too, but I certainly don't live miserable!!

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misslexi: Possibly Dermatitis Herpetiformis, especially considering the intolerance to milk, and the stomach problems. But what you describe doesn't sound typical. You might consider searching the web for photos of DH. As soon as I saw them, I knew what I had.

The thing is, if it's DH she would have to go entirely wheat free. 98% isn't good enough in my experience. The relief all comes in the very last exclusion of wheat.

There seems to be many skin conditions that relate to gluten intolerance. If it is DH it will likely have some or all of these symptoms. Stinging rather than itching, inflamed areas around the sores that are bright red or purple, tendency for the sores to run in lines, tendency to be similar on both sides of the body, blisters that yield bloody fluid when broken. Often worse on areas of the skin that have been traumatised but not limited to those.

It can take a long time to get rid of DH (months or years) but in my experience after a couple of weeks of extreme exclusion of gluten symptoms improved. Especially gastrointestinal symptoms, which disappeared in a few days.

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Sounds exactly (no exaggeration) like my hands. I've PM'ed you so please get in touch:)

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Doesn't really sound like DH, but if it is, dapsone would clear it up. If it isn't dapsone would do no good.

richard

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itchy, Are you saying that you sting rather than itch?

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I just looked up some pictures on google, and some of them look very much like her hands. Except her hands are completely red, and in many pictures only the actual spots and the immediate area are red. If it is Dermatitis Herpetiformis, could the redness be from our thinner skin? She may have even done extra damage with the steroid creams. I also don't believe she has ever really had anything on the backs of her hands/fingers.

I will definately ask her if she has tried dapsone.

"Stinging rather than itching, inflamed areas around the sores that are bright red or purple, tendency for the sores to run in lines, tendency to be similar on both sides of the body, blisters that yield bloody fluid when broken. Often worse on areas of the skin that have been traumatised but not limited to those. "

Her hands have appeared purple in spots, especially when they are particularly sore and swollen. I think you might say they flare up in lines, she will have them appear along a finger at the same time, or down the side of her palm, etc. Both of her hands are bad. I know they are like blisters, but I don't know if the fluid is bloody at all. Her hands have never been traumatized but her skin does get a real workout there. Because of what she does, she is constantly using them, massaging, using skin products (including scrubs)...I don't really think that counts as traumatized though.

The rash on her back at the moment looks more like smaller hives spread out a bit than dermatitis herpetiformis. It doesn't look that severe.

Could gluten intolerance aggrevate eczema? I was kind of hoping she would be able to find a cause for her pain, just so she would know how to make it go away...I'll work on convincing her to go completely gluten free anyways. I imagine its much harder as a "real adult" than a young person to give up everything you're so used to. Pretty unlikely that going gluten free could make anything worse right? In theory? lol. I know its caused some problems for me, but problems I'd much rather live with than what life was like before gluten-free.

Thanks for your help everyone :) If anyone else has something to suggest or add I would love to hear it!

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She could go to a "knowledgeable" dermatologist and ask for a skin biopsy for DH. They have to biopsy the clear skin adjacent to a lesion and not the actual lesion. It has to be done properly to get an accurate test. A diagnosis of DH is a diagnosis of celiac. I don't have DH and others on here know more about the biopsy procedure than I do. Many on here go low/free of iodine(for awhile) in addition to gluten free. Iodine can aggrivate DH I guess.

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squirmingitch: Yes, they sting. They only itch in the very last stage of healing. During the worst times large sections of my skin would be actually painful.

Couldn't call myself stingy, though, could I? :-)

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Well I don't sting. I ITCH!!!!!!! Like the very devil! And most of the people here say they ITCH. The literature says intense ITCHING.

So I would not want misslexi to get the wrong impression that it stings more than itches. Perhaps it does with you itchy & that's okay if that is your take on it. But you might wish in future posts to make it a little more clear that stinging is what YOU feel but others describe ITCHING.

You did the same thing in your response to me that 1st time I posted; even going so far as to tell me what I was feeling was a sting more than an itch. I'm old enough to know the difference & others are too.

Now, other people besides you may experience stinging more than itching and they can say so but to act like we all feel stinging & not itching is a misnomer.

I might add that I don't bleed unless/until I scratch it to the point of bleeding. Otherwise my lesions exude a clear fluid when the blister breaks & after that the lesions exude a clear amber, sticky-ish fluid.

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I'm sorry I upset you.

Obviously there are a lot of different responses to gluten, and apparently many skin conditions caused by gluten exposure. All us us suffer miserably from this plague, regardless of the specific sensation we feel.

The literature I recall suggests stinging and pain as typical of DH, but I'll check my facts before posting further.

I would never presume to tell you what you are experiencing.

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To the OP:

I have self-dx'ed DH (well, my ND thinks its DH, too).

Anyway, I was on steroids - topical and oral prednisone and it did help; however, coming off them was HIDEOUS. The rash was worse after the steroids (and after withdrawing them) than before the steroids.

See if your mom can get a biopsy from a dermatologist. In the interim, go gluten-free and think about trying a low iodine diet to help snuff down the DH flame. If your mom did better off gluten before, DO IT AGAIN.

Best of luck to both of you!

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