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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 Celiac.com's FREE weekly eNewsletter   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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Lauriann

Having Sores That Show Up

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Hi..

First I want to apologize if my last topic insulted anyone, that was not my intention at all. Was diagnosed with Celiac and I feel that doctors leave you to figure it out all on your own. I was diagnosed and then told I didnt have and told I did have it. Then that was it, no explanation of symptoms or what to expect.

My concern is, I have been getting sores in my ears...I would say my skin has become very sensitve I think to shampoos and my conditioners..they scab up and take a long time to heal. Also, I know that getting canker sores in ones mouth is one of the symptoms... but I get ... I would call them cold sores of the nose. I get these once a month...they look awful I spoke to my doctor about it..he wrote it down and said nothing in response to this...

Does anyone else have any of these things going on..or something close to it and maybe some advise.

thanks...Lauri :(

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I have similar problems with shampoos. I have to check to make sure they are free of gluten contain products. Oats are very common in shampoos and conditioners and wheat is also often used. I get a burning itch and sores and scabs that burn even more when I wash my hair. I seem to get it to clear up but after a while it comes back. I have found that it is best (for me) to alternate shampoos. Using a medicated shampoo for dandruff and then a daily clearifyer. I also have found that I am allergic to other items in shampoos. Nettle is one that I have to avoid is it is very common also. Currently I am rotating Equate Cooling Dandruff Shampoo and Conditioner and Suave Daily Clarifying Shampoo. That seems to be working right now.

I really think I have the Dermatitis condition that goes along with gluten. But the doctors just call it eczema. You would think they would put it together. Especially since it does break out with contact to gluten. The worst areas I get it right now is the back of my years. Even with the shampoos I am using I still have to apply cortisone to that area frequently to sooth the burning. It is not so bad now as it was before I found these two shampoos that seem to work together.

I am curious. Do you have a real bad itch inside your ears also? It is driving me nuts and thedoctors can not find anything wrong there.

Mark

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lauri, wish i knew the answers...i get what seems to be eczema or dandruff in my ear folds...it's very scaly and drives me crazy. it seems to come and go.

I also get a dreaded nasal sore that shows up periodically. I've had it maybe three times all year. A little ointment helps it go away faster.

I don't know if it's Celiac related or perhaps some other autoimmune thing. I know nasal sores can go with Lupus, but I don't believe I have that.

Mouth sores are part of my typical symptoms of being glutened...I grew up with them and still get them mildly when I get glutened. The fact that I can get the ear eczema and nasal sores in the absence of other glutening symptoms makes me think they're not the result of being glutened.

Do check your diet and shampoos carefully, though.

I do well with a strong dandruff shampoo...I try to get a bit in my ears and then rinse it. I do use regular shampoo sometimes, but I have to use dandruff shampoo a few times a week for control.

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I don't have those symptoms, but I have had acne for 40 years and I get big chin ulcers and have scarring. I also break out when exposed to the sun. I've noticed that my skin has improved over the six years since I was diagnosed, and especially since I finally tracked down my other food intolerance problems. Your liver processes toxins, and if you are celiac you get hit with toxins every time you get glutened. Your liver can get stressed. Your skin is also an organ that deals with toxins and it gets stressed as well. Perhaps you have other allergies? Or perhaps you were recently diagnosed and are still healing?

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April,

Your symptoms sound just like mine. The mouth sores and nasal sores went away after I went gluten free and other then one time in the last fifteen years I have been free of them. As far as the eczema behind the ears I have never been able to get rid of it completely. I have had allergy tests and I am allergic to so much it makes it hard to find products that do not bother me. I have also found out that fabric softeners are really bad. My daughter also has reactions to it. Her doctor said that he sees about three cases a week that are rashes caused by fabric softeners. The only one that I have been able to use and not get a rash is manufactured by Lame Advertisement.

Mark

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I have been getting sores on my scalp for years. I assumed I was sensitive to shampoos , I guess I was, & I would switch around to different brands every bottle. The symptoms always came back. Finally I stopped using shampoo completely. I had fewer outbreaks but really had success when I went gluten-free a year ago. This week I had a new breakout. Surprise! Gluten reaction!

My routine is this, first I "wash" my hair with a light weight gluten-free conditioner, then rinse. I sprinkle my scalp with apple cider vinegar and let that soak while I perform other necesities, then rinse. Then I finsh with a heavier gluten-free conditioner ( I have very thick hair that will be a bird's nest w/out help!) and rinse after massaging apple cider vinegar on my skin, makes it soft.

Now I have had the itchy internal ear problem. After I dry my ear with a swab, I take another swab & put a bit of castor oil on it and swab again. No more bug in my ear sensation! My GH is prone to ear aches & infections when he referrees outdoors but since he started using oil in his ears, no more.

I hope something here is helpful to you. I don't have your exact problems but who knows?

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The only place I have had sores was the ear- they were maddening- itchy painful and horrid. They usually precipitated an ear infection. After going gluten-free three years ago, they went away completely over time.

I had a flare about two weeks ago (and it was after I had gotten glutened).

Hope you find some answers and relief!

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I have those symptoms too. I am also allergic to MSG and dairy products. Avoid caramel colorings unless you know that they are made in the US. Pepsi products are gluten free according to a newsletter. Other cokes and deserts may contain wheat in their caramel coloring if the caramel coloring is made outside of the US. Caramel coloring is made from carbohydrates. Some companies make caramel coloring from beets. Do some research of the specific product before you consume.

Soy sauce contains wheat. Alcoholic beverages use yeast in the fermentation process. I don't go near them personally. Yeast comes from wheat and it is used to break down sugars during fermentation. Check to see if you are also allergic to milk or MSG. Many celiac patients are also allergic to those things and don't even know it. There are lactase pills over the counter which may help break down the lactose if you consume small amounts of dairy. I do and I am safe. A small Frosty here and there with a lactase pill is fine. A large Frosty three days a week would be a living hell. Normal stomachs produce lactase which aid in the breakdown of lactose, but my stomach does not produce the enzyme. The enzyme pills are only $10 for 30 days worth. You only need to take them if you consume dairy. Take them at the same time you consume the dairy product. You don't have to take them on a daily basis.

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lauri, wish i knew the answers...i get what seems to be eczema or dandruff in my ear folds...it's very scaly and drives me crazy. it seems to come and go.

I also get a dreaded nasal sore that shows up periodically. I've had it maybe three times all year. A little ointment helps it go away faster.

I don't know if it's Celiac related or perhaps some other autoimmune thing. I know nasal sores can go with Lupus, but I don't believe I have that.

Mouth sores are part of my typical symptoms of being glutened...I grew up with them and still get them mildly when I get glutened. The fact that I can get the ear eczema and nasal sores in the absence of other glutening symptoms makes me think they're not the result of being glutened.

Do check your diet and shampoos carefully, though.

I do well with a strong dandruff shampoo...I try to get a bit in my ears and then rinse it. I do use regular shampoo sometimes, but I have to use dandruff shampoo a few times a week for control.

Check to see if the shampoos or soaps have wheat germ oil. That will cause skin problems for celiac folks like us.

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Sores or skin problems in the ears for individuals with Celiac Disease. I have Dermatitis Herpetiformis, I am Celiac and so are my two sons and my siblings. My elbows are scarred from years of being undiagnosed and although they get smooth and look close to normal everything is set back after accidently consuming gluten. Now for the interesting part, my ears and scalp are affected same as my elbows. You can't see the scalp issue under the hair but it is maddening. I too used dandruff shampoos to no avail, nothing worked until I was diagnosed about 5 years ago. However, like I said if I accidently consume gluten it is no holds barred itching and pain. If you continue to have issues with your ears or scalp it is a good bet that you are consuming gluten from something that you consider safe.

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Sores or skin problems in the ears for individuals with Celiac Disease. I have Dermatitis Herpetiformis, I am Celiac and so are my two sons and my siblings. My elbows are scarred from years of being undiagnosed and although they get smooth and look close to normal everything is set back after accidently consuming gluten. Now for the interesting part, my ears and scalp are affected same as my elbows. You can't see the scalp issue under the hair but it is maddening. I too used dandruff shampoos to no avail, nothing worked until I was diagnosed about 5 years ago. However, like I said if I accidently consume gluten it is no holds barred itching and pain. If you continue to have issues with your ears or scalp it is a good bet that you are consuming gluten from something that you consider safe.

Just an FYI - This thread is 4 years old. I don't thing any of those posters have been active on the board in several years.

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    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
    • I've actually been glutened by shampoo with hydrolyzed wheat protein, and I wasn't even the one using it. It was my husbands! I swear I don't go around eating my husbands hair.  I am pretty sensitive though, so it's entirely believable that the trace amounts in his hair were getting onto his and my hands and then making its way to my mouth, etc. etc.  It was a slow and steady low grade glutening that eventually built up to something that I was able to recognize as more definitively "a glutening". Once we ditched the shampoo and I recovered, I realized that I'd been feeling it for weeks.  It's going to depend on your level of sensitivity, but even if you don't feel it, it could still be doing damage. Also... I second that. Starch is a carbohydrate, protein is a protein (obviously), there is no simple process that would convert one into the other. Also, as gluten is a protein, converting starch to protein wouldn't be expected to do anything to gluten ANYWAY.  Speaking as a biologist here. I call poppycock. 
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