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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.

Could This Rash Be From A Glutening? (Photo)
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5 posts in this topic

Hello!

After a year of constant sickness and stumping 4 gastroenterolists, I was finally diagnosed with a rare parasite. Needless to say, my GI is all messed up and I am slowly healing. Upon my many hours of trying to find a diagnosis online (since I seemed to lose hope in modern medicine), eventually it was suggested that I may be gluten intolerant.

One symptom I noticed when I wasn't yet strict on my gluten-free diet were these random welts that I would discover every other week. It seemed like only one would form and then dissolve, then maybe I'd get another one two weeks later. They were incredibly itchy, and honestly I had always thought it was just a spider bite. I went back on a gluten-free diet and they seemed to go away. I thought maybe it was due to gluten, but i'd eat gluten occasionally and it wouldn't happen sometimes.

I've been totally gluten-free for 2 months now. Now on Tuesday, I broke out on the left side of my neck, left forearm and left finger in a whole bunch together -- probably 12-15 total (most I've had at once was 2). I went to the doctor and he seemed confused and diagnosed it as shingles (because they are all just on one side of my body). He said he was "95% sure", despite the fact that I have no pain at all, no sick feelings, and absolutely no blistering which are all symptoms of shingles. The only thing I can think of was I had toasted some bread in a toaster oven the day before the bumps broke out. There is a possibility of cross contamination, but just a few days earlier than that I had done the exact same thing and had no problems at all.

I was wondering if anyone has experienced these symptoms. I added photos, I'm sorry that they are so gross. I was hoping someone would recognize the same type of rash. I honestly don't think it's shingles, but the doctor was confident that it was since it's only on one side of my body. Any suggestions?

Thank You!

http://i3.photobucket.com/albums/y90/jasonstangelo/photo.jpg

http://i3.photobucket.com/albums/y90/jasonstangelo/photo-2.jpg

Look familiar to anyone?

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I haven't had skin problems like that from gluten, but I have had similar skin reactions for other reasons. As a teenager I used to get embarrassing hives. They broke out on my side, my upper arms, neck and lips. My lip would swell as if I'd been hit in it. It usually pointed back to stress or excitement, but now that my doctor suspects I may have been celiac my whole life it does make me question what caused them. Have you tried something like Benadryl to see if it improves the bumps any? If it does then it may not be celiac related, but if no improvement is seen it would surely be something non-allergy or non-stress. I wish I could help more, but I do hope you find a quick answer...and don't share toasters!!! :)

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I haven't had skin problems like that from gluten, but I have had similar skin reactions for other reasons. As a teenager I used to get embarrassing hives. They broke out on my side, my upper arms, neck and lips. My lip would swell as if I'd been hit in it. It usually pointed back to stress or excitement, but now that my doctor suspects I may have been celiac my whole life it does make me question what caused them. Have you tried something like Benadryl to see if it improves the bumps any? If it does then it may not be celiac related, but if no improvement is seen it would surely be something non-allergy or non-stress. I wish I could help more, but I do hope you find a quick answer...and don't share toasters!!! :)

Thanks for responding! I've never gotten hives before so I'm not sure if this could be them. I have taken Benadryl for the last two days and it doesn't seem to help much, but it sure does knock me out lol. It's Day Three and they are still so itchy. And yes, definitely no more shared toasters!

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I'd say if the Benadryl didn't help they sure aren't hives. Plus they don't last that long normally. Hopefully someone will come along with a bit better insight into what it could be.

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Hello!

After a year of constant sickness and stumping 4 gastroenterolists, I was finally diagnosed with a rare parasite. Needless to say, my GI is all messed up and I am slowly healing. Upon my many hours of trying to find a diagnosis online (since I seemed to lose hope in modern medicine), eventually it was suggested that I may be gluten intolerant.

One symptom I noticed when I wasn't yet strict on my gluten-free diet were these random welts that I would discover every other week. It seemed like only one would form and then dissolve, then maybe I'd get another one two weeks later. They were incredibly itchy, and honestly I had always thought it was just a spider bite. I went back on a gluten-free diet and they seemed to go away. I thought maybe it was due to gluten, but i'd eat gluten occasionally and it wouldn't happen sometimes.

I've been totally gluten-free for 2 months now. Now on Tuesday, I broke out on the left side of my neck, left forearm and left finger in a whole bunch together -- probably 12-15 total (most I've had at once was 2). I went to the doctor and he seemed confused and diagnosed it as shingles (because they are all just on one side of my body). He said he was "95% sure", despite the fact that I have no pain at all, no sick feelings, and absolutely no blistering which are all symptoms of shingles. The only thing I can think of was I had toasted some bread in a toaster oven the day before the bumps broke out. There is a possibility of cross contamination, but just a few days earlier than that I had done the exact same thing and had no problems at all.

I was wondering if anyone has experienced these symptoms. I added photos, I'm sorry that they are so gross. I was hoping someone would recognize the same type of rash. I honestly don't think it's shingles, but the doctor was confident that it was since it's only on one side of my body. Any suggestions?

Thank You!

http://i3.photobucke...ngelo/photo.jpg

http://i3.photobucke...elo/photo-2.jpg

Look familiar to anyone?

I have had Shingles and they are painful and itchy. Mine appeared as a cluster of pox like lesions and spread down a nerve run. I can't imagine your rash being Shingles w/o pain. I have seen Shingles on other people that resembled your photos but they too had pain, soreness, itch. Your doctor could be right. . . hmmmm

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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