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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.

Gluten On Surfaces...
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8 posts in this topic

How many people here think they've been glutened by touching door/fridge/cabinet handles, taps, remote controls, etc. that were touched by people who ate gluten foods? (and then touching your face/mouth/nose)

I'm being super careful about not letting my foods get contaminated, not eating any processed foods, etc... but this is the one thing I wonder about. I live in a mixed household and there isn't really any way I can move out or make the house gluten free. I wonder if I am getting glutened from touching surfaces with gluten on them... but it's so hard to know because my celiac symptoms are not overt. Is it possible to not get glutened in a mixed household if I wash my hands a lot and don't touch my face/mouth/nose?

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I was glutened in a gluten household where I brought my own food and ate it from the container I brought it in. I did drink a cup of tea from the household cup. The gluten either came from the teacup or from my touching something that had gluten on it and then handling my food.

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This happened to me. I also live in a shared household where I cannot make it gluten-free. A couple of weeks ago, I had my hands on a leather chair in the living room where there is gluten dust everywhere from crackers and snacks, I left to take an allergy pill, and I forgot to wash my hands. A few seconds later, I had bad stomach cramps.

What I do now in order to live on the level of a super-sensitive is to use paper towels to turn on faucets, switch off lights, turn door knobs, open cabinets, etc. And I wash my hands right after I touch any shared surfaces. I found my level of CC dropped dramatically once I set my standards super high. If I relax them even a little (not use a paper towel), I get CC'd again.

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Wow... looks like I do need to be more careful. Thanks for the replies.

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One time I ate at a friends. We ate outside and I brought my own food and sat with my chair pulled back from the table. Everyone else was eating gluten and we kept going in and out of a sliding door. I think I got glutened from touching that door and then not washing my hands. I guess I'll need to have wet wipes next time I'm in a situation like that.

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I got glutened recently at a big morning tea where about 150 people were eating cake. Grrr. I had a cup of tea, not sure if that got me (it wasn't near the food) or if I touched something someone else touched. I have a rule to wash my hands (and make others wash theirs) as soon as I get home.

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Is it possible to not get glutened in a mixed household if I wash my hands a lot and don't touch my face/mouth/nose?

I think that may depend on where you store your food and cooking implements, how sensitive to gluten you are, and how close you are to any airborne gluten.

When I go on vacation, I bring a huge plastic box with me (only done it a few times now). It contains my pots and pans, plates, spoons, dishrag, tinfoil, salt - whatever I need, it's in that box. I don't use anything not outside that box. I cover whatever counter space I use with tinfoil or papertowels, and only cook when everyone else is not so there's no splashing, etc... If there's lots of crumbs with a meal, I will usually eat early before everyone starts, or eat after everyone is done.

I have yet to make it through a vacation without getting glutened, nonetheless. In fact, when I am staying at homes where they eat a lot of gluten, I tend to get glutened at least every other day. I try to stay paranoid to keep safe, and sometimes that works, but...it's very, very hard to keep that mindset.

Basically, anything you touch, you have to wash your hand. Open the fridge and wash, open a cupboard and wash, touch the counter and wash, put a hand down the arm rest of a chair and wash - my hands were chapped from washing so much, one winter, and I STILL got glutened. :( And one of the houses is a shared household, with one gluten free member, so they're very careful to avoid the gluten cc, but it didn't help.

I couldn't say whether it was inhaled gluten, or if I simply forgot just once to wash my hands before touching my mouth or my food, but for me, it was pretty much impossible, sadly. Sucked, too, because it makes any vacation a very stressful experience rather than an enjoyable one, you know?

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Thank you all for sharing your experiences. I believe I have become pretty sensitive to small amounts of gluten (for example, I developed dermatitis herpetiformis on my face when I started using a hand soap containing hydrolyzed wheat protein). I used to get cramps and diarrhea from ingesting gluten, but now I only get constipation, which makes it harder to know if I've been glutened (I think sometimes I have C for reasons other than being glutened). But I have chronic health problems that have gotten worse and worse since being gluten-free, and I suspect that small exposures to gluten are contributing. I think I need to live in a gluten-free house, so I'm going to try to find a way to make that happen.

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