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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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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.

Is The Problem Skin Contact Or Inhalation?
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8 posts in this topic

I spent an hour in Panera two days ago for a work meeting. I didn't consume anything, not even water. I was very careful not to touch my face and watched my hands as soon as we left. I still got glutened.

I called the Panera and confirmed that they don't make their bread from scratch in that location, but they do bake bread that arrives as pre-formed dough.

I would really like to figure out why I sometimes get glutened if I'm in a highly gluteny area. Is it inhalation of gluten particles in the air, or skin contact? I know there's controversy around both, but I'm 100% certain that I was glutened just by being in the Panera and I've read enough comments from other highly sensitive posters to know it happens to others as well.

If I could get a handle on whether the problem is skin absorption or inhalation, it would help to know what to avoid.

Just a few weeks ago I successfully ate gluten-free flatbread at a flatbread restaurant (first attempt in 8 months) so I know I don't always react to being around gluten.

For those of you who are sensitive around gluten, what do you believe is the trigger?

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I think that it could be both. I have seen several studies of inhaled gluten being a problem. I haven't seen any studies of skin contact being a problem. I think that studies exist which show that it isn't. There hasn't been much done with super sensitives, however, so we are stuck with guessing.

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I reacted to bread by touching the bag. I reacted to mini donuts by smelling them. I think it could be both or either one for some of us.

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I reacted to bread by touching the bag. I reacted to mini donuts by smelling them. I think it could be both or either one for some of us.

Wow...that's pretty extreme. How do you "react"? BTW, I HATE the smell of donuts. Always have, even before my dx.

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I spent an hour in Panera two days ago for a work meeting. I didn't consume anything, not even water. I was very careful not to touch my face and watched my hands as soon as we left. I still got glutened.

I called the Panera and confirmed that they don't make their bread from scratch in that location, but they do bake bread that arrives as pre-formed dough.

I would really like to figure out why I sometimes get glutened if I'm in a highly gluteny area. Is it inhalation of gluten particles in the air, or skin contact? I know there's controversy around both, but I'm 100% certain that I was glutened just by being in the Panera and I've read enough comments from other highly sensitive posters to know it happens to others as well.

If I could get a handle on whether the problem is skin absorption or inhalation, it would help to know what to avoid.

Just a few weeks ago I successfully ate gluten-free flatbread at a flatbread restaurant (first attempt in 8 months) so I know I don't always react to being around gluten.

For those of you who are sensitive around gluten, what do you believe is the trigger?

The gluten molecule cannot penetrate the skin. But, then, some may have a gluten allergy and can have a histamine reaction. I'm not too sure there would be enough gluten floating around at Panera to get into your nasal passages, but who knows.

Disclaimer: I'm not ultra sensitive. B)

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My daughter doesn't have celiac but used to be intolerant (IgG allergy) to wheat and gluten. She could not walk through the bakery department in the store. Her skin would start to itch and she would feel sick to her stomach. I really don't know exactly what the cause was. She also has a problem with peanuts and can't be in an area where a peanut butter grinder is.

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I reacted to bread by touching the bag. I reacted to mini donuts by smelling them. I think it could be both or either one for some of us.

I feel the glands in my neck. Sometimes I cough. I notice extra mucous. Sometimes I notice my abdomen swell. I think I have an allergy to wheat and yeast. I am 3 months from gluten free. I am hoping my body will settle. None of these reactions are painful and severe.

DT

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I was meeting a friend today at a place much like Panera and had only intended to have a drink there, but standing in line to order, my eyes started burning, and I felt I could not breath, by the time she arrived I asked if we could please just go next door, I could not stay there another moment.  Inhaled Gluten?

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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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