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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Rash Relief Help?
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16 posts in this topic

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StephieRN    1

Hi all. First I'd like to say I am new to celiac and tomorrow is my first day gluten free.

Can someone help me with tips/pointers on itching relief until the rash subsides? This is the worst I've ever had it, it's on my trunk and butt and arms/neck. It's not as awful as some pics I've seen but the little microblisters are there, and I'm itching EVERYWHERE not just where I have rash. The most annoying itch is my ears, outer part, and scalp. Sometimes wrists/hands. I feel a general "tickle" all day and it's driving me NUTS.

Sooooo.... Yes I've tried Benadryl (can only take it at night because I'm a healthcare provider during the day). Calamine didn't help much either I tried it last night. Anything y'all DH veterans can recommend?

Also.... How long after refraining from gluten does the rash usually get better? I'm miserable :(

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rosetapper23    236

Important: Eliminate all iodine for a while. It's important, when you have DH, to eliminate BOTH gluten and iodine. If you can do this, your rash should stop itching within a few days. This means that you should eliminate dairy during that time, because dairy contains high amounts of iodine in some areas of the country.

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Adalaide    361

After developing the rash I went iodine free. This meant eliminating dairy for a few days until I could find a source of milk that isn't contaminated through the milking process. (I now consume copious amounts of raw milk.) I also started taking prednisone at the same time. Within days I was feeling much better. I am still itchy, and I still have noticeable rash. It has been a week. I don't feel 100% better, but considering how I felt a week ago I am certainly feeling tons better. I questioned whether or not I'd flay all the skin off myself by now.

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StephieRN    1

Oh man I knew nothing about iodine. This is a bit overwhelming.

Well I'm a milk maniac, I will check tomorrow about ours, it will probably be okay though because its Braums (local) and they're motto is no additives/medications/etc

Thanks y'all so much for the info

Love,

ItchyA$s

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Adalaide    361

Th issue with milk isn't any additive. Industry standard is to use a betadine wash on the cows prior to milking to sterilize them, and this is where our problem stems from. You would need to speak to the supplying dairies and ask about the milking practices. I had to call over two dozen dairies before I found safe milk. While the dairy I get milk from does use a betadine wash, they are adamant that the industry standard taints the flavor of the milk and carefully clean the cows again afterward to be sure that none gets into the milk. If you don't have luck with the large dairy, start contacting the smaller ones that sell raw milk in your area. They may be on a small enough scale to take care with this sort of thing. I totally get where you are coming from. I drink gallons of milk a week. I had to make my own butter on Saturday. I am going to a cheese making class on Thursday. This is killing me, but if I wasn't doing it I probably wouldn't have skin left on my back. I was rash from neck to butt crack.

Oh, and here is a site that may help you find raw milk in your area. http://www.realmilk.com/where01.html I'm not a super raw milk advocate or anything. (Although I may never go back to pasteurized.) It's just that it is this or nothing for me, and it may come down to that for you. And if it does, at least you know you can make your own butter and cheese.

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StephieRN    1

That was the most informative and awesome reply ever! Thanks adalaide!

I will investigate the milk issue. I am hesitant to think iodine affects me that much because I love the heck out of seafood and have never ever had any reaction. But again, I don't know much about it regarding celiac disease so I'm definitely rolling to learn and try it.

My daughter had a violent rash from shrimp when she was younger, combined with her wheat allergy I'm now wondering if it was all related?

You have my wheels turning. I'll be reading more about it when I get off work

Thanks again!

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Lady Eowyn    14

Hi all

That milk business is all new to me.

Over the years, have tried applying many creams to my DH (before I knew what it was)! Nothing worked and most things aggravated or hurt it. The only time it vanished like magic was when I took antibiotics and steroids for bad chest infection. Came straight back after. Also took tetracyclines (spelling?) for it from doc - years ago -(who said it was low level infection) for months. Helped slightly I think, but came straight back and when started again didn't help. Useless info, I know!!

Sea salt aggravates mine - shame, because I have some delicious Cornish sea salt - iodine again.

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squirmingitch    494

For the low iodine diet see http://www.thyca.org/rai.htm#diet

For help with the itching etc.... see:

http://www.celiac.co...ing-pain-of-dh/

BTW, regular calamine lotion won't do it --- see the link for the exact product.

Also, make sure your shampoos, conditioners & soaps are gluten free. I use Suave Naturals shampoo & conditioner --- cheap, works great & gluten free.

Read this:

http://www.celiac.co...ewbie-info-101/

Iodine in dairy products:

http://www.celiac.co...dairy-products/

And more info. on dh:

Interesting Reading on DH:

http://www.celiac.co...-reading-on-dh/

Descriptions of DH Types:

http://www.celiac.co...ns-of-dh-types/

Help for the Itching, Stinging, Burning, Pain of DH:

http://www.celiac.co...__1#entry823195

DH Photobank:

http://www.celiac.co...-dh-photo-bank/

And welcome to the board! Ask away. Feel free to vent & whine & stamp your feet --- we get it!

There is no real answer as to how long before it goes away. Everyone is an individual. And the bad news is that dh can present ANYTIME it darn well feels like it even if you have been strictly eating gluten-free. It can do this for 2 years or even longer until all the antibodies get out of our skin. For more info. on that see the link for "Interesting reading on dh"

Now aren't you glad you joined our club? :wacko::D :D

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Lady Eowyn    14

Hi squirmingitch

I have just seen your photos on the link above - am so exited (sorry) - your DH is exactly like mine. I think of it as 'classic DH' as it seems to vary with people.

I am self-diagnosed (apart from anti gliadin high on saliva test) and have had DH since about age 15.

Am thinking about further tests but can't eat gluten for them - i think it might kill me.

Love your posts by the way, mine tend to be beside the point :unsure: .

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squirmingitch    494

Hi squirmingitch

I have just seen your photos on the link above - am so exited (sorry) - your DH is exactly like mine. I think of it as 'classic DH' as it seems to vary with people.

I am self-diagnosed (apart from anti gliadin high on saliva test) and have had DH since about age 15.

Am thinking about further tests but can't eat gluten for them - i think it might kill me.

Love your posts by the way, mine tend to be beside the point :unsure: .

I understood you. :D :D We have to have humor or we will lose it. Well, I am terribly sorry that you have had this since about 15 --- how old are you now? I understand about not wanting to go on gluten for further testing. DH has a way of making sure we stick to the diet --- dx or no. :o

As for me, it looks like I'm going to be a long, long time getting the antibodies out of my skin. :ph34r: I had hoped I would be a "short timer" but from this most recent outbreak & it's severity; I think I'll be looking at longer than 2 years. Sigh.

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That was the most informative and awesome reply ever! Thanks adalaide!

I will investigate the milk issue. I am hesitant to think iodine affects me that much because I love the heck out of seafood and have never ever had any reaction. But again, I don't know much about it regarding celiac disease so I'm definitely rolling to learn and try it.

My daughter had a violent rash from shrimp when she was younger, combined with her wheat allergy I'm now wondering if it was all related?

You have my wheels turning. I'll be reading more about it when I get off work

Thanks again!

When I read about iodine and DH I was standing in the kitchen, stirring shrimp etoufee.

I swore up and down that wasn't my issue. Well, guess what....

You don't have to do LI forever. It's not like gluten-free. It's to get the rash to calm down, then you can add it back to the degree you don't flare.

I promise, it's worth it.

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Lady Eowyn    14

I understood you. :D :D We have to have humor or we will lose it. Well, I am terribly sorry that you have had this since about 15 --- how old are you now? I understand about not wanting to go on gluten for further testing. DH has a way of making sure we stick to the diet --- dx or no. :o

As for me, it looks like I'm going to be a long, long time getting the antibodies out of my skin. :ph34r: I had hoped I would be a "short timer" but from this most recent outbreak & it's severity; I think I'll be looking at longer than 2 years. Sigh.

Hi

I am 51 now. When I was younger I was much worse and it was all over shoulder blades, buttocks and scalp with some on face and upper arms. I still have scarring. Now it is almost entirely scalp, though I still get it sometimes around my mouth or between my eyes, back of neck and in ears. I get the odd really bad one central shoulder blades, upper arms and calves. When I was young tried wearing gloves in bed or plasters on fingers to prevent scratching.

In more recent times had a doc say it was low level infection, psychologist say it was self harm ( :o :o ) and trichologist no idea :o .

I know everyone says how itchy it is, and I am obviously compelled to attack it but to me, it is more sore and very painful and very annoying!

It varies in severity but has never gone away completely except one time when I took steroids and antibiotics. It has been worse lately but I think this might have been from using seasalt - yum.

When glutened, I tend to rub at my face generally and bite my hands - so it has a general irritating effect on me. (Been gluten free from 2011).

My eldest brother has celiac (and DH) and in hindsight, I think my mum had DH and her mother though it was never mentioned.

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squirmingitch    494

From your family history as well as your own history as well as your response to gluten-free diet, it's pretty obvious you are celiac. You know, celiac as well as the dh can go into spontaneous remission especially when we are children. That's why they used to think it was a childhood disease.

Steroids will help but most of us who have been on them know that when you quit them the dh comes roaring back.

Well, welcome to our club. :)

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StephieRN    1

OMGOSH I've had the worst time trying to reply to this. Anyhoooo.....

Thank you tons for all the useful info, squirmingitch!

And pricklypear.... What are the big offenders for iodine? Milk and seafood? I'm not gonna go psycho with it, I'd rather just ride it out then drive myself batty. My DH usually only lasts 2-3 weeks at most. But if there are big obvious things I can eliminate I definitely will. I'm fine without milk for awhile

I'm SO THANKFUL to everyone that responded here its amazing what great support you guys give people

By the way I was going to post rash pics here but I can't figure it out from my iPhone. :(. I will when I figure it out

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OMGOSH I've had the worst time trying to reply to this. Anyhoooo.....

Thank you tons for all the useful info, squirmingitch!

And pricklypear.... What are the big offenders for iodine? Milk and seafood? I'm not gonna go psycho with it, I'd rather just ride it out then drive myself batty. My DH usually only lasts 2-3 weeks at most. But if there are big obvious things I can eliminate I definitely will. I'm fine without milk for awhile

I'm SO THANKFUL to everyone that responded here its amazing what great support you guys give people

By the way I was going to post rash pics here but I can't figure it out from my iPhone. :(. I will when I figure it out

Visit www.thyca.org and read the instructions for a low iodine diet. Lots of things can be high iodine. You have to figure out the worst ones for you.

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