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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.

Bugs Crawling On Skin Feeling?
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8 posts in this topic

A lot of the time I always have this itchy feeling of bugs crawling one me, or I am just plain old itchy all over despite not having a rash (well i have a chronic rash on my knee's/elbows and sometimes it shows up on my outer thighs). I'm just wondering if this could be a symptom. My face is always dry/flaky looking, theres always red/flaky skin around my nostrils, and my scalp ALWAYS has scabs and itchy bumps, seriously my scalp itches so bad sometimes I just can't sleep.

Has anyone else experienced this?

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A lot of the time I always have this itchy feeling of bugs crawling one me, or I am just plain old itchy all over despite not having a rash (well i have a chronic rash on my knee's/elbows and sometimes it shows up on my outer thighs). I'm just wondering if this could be a symptom. My face is always dry/flaky looking, theres always red/flaky skin around my nostrils, and my scalp ALWAYS has scabs and itchy bumps, seriously my scalp itches so bad sometimes I just can't sleep.

Has anyone else experienced this?

Sure sounds like Dermatitis Herpetiformis...

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How long have you been eating gluten free?

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I get this feeling any time I'm using lotion/soap/shampoo that isn't gluten free.

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im not gluten free yet. I don't know if I'm going gluten free. My doctors office called and said all results were ok. But they didn't give me the details of the results so I don't even know what the numbers are. Do you think I should call for a copy to be sent? I tested for a moderate gluten allergy and I tested sever for a milk allergy but i've never had a reaction to dairy other then a stomach ache (maybe headache and rash, hard to say)

I don't have blisters though, isn't that what DH is? I just get scabs on my head and I don't know if its from scratching it at an earlier time. Sometimes my head doesnt itch at all. Maybe i should take notice to when it starts to itch and what i ate before the itching started.

I'm just frustrated that my doc said the results are ok because I don't feel ok.

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Not had that experience thankfully but have you thought about psoriasis ?

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You should ask for copies of your tests. You can post the results here and there is usually someone who can read those results. I had sores on my scalp for years. At one point I thought I must be sensitive to something in shampoos. I stop using them but still had the problem. Once I went gluten-free the problem has mostly solved. I still have an itchy scalp but seldom have any breakouts. I'm wondering now if I cut the dairy completely out if it would help the itchiness has someone else had suggested. I'm paying attention this week if on days when there is no dairy if I'm less itchy.

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Nothing really to add except a chance to use a word I learned recently:

Formication is the medical term for a sensation which resembles that of insects crawling on (or under) the skin.

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    • 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? 
    • Confused
      I have not. I'll talk to my doctor about it
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