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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.

How Do You Know If Someone Is "super Sensitive"?
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11 posts in this topic

I am beginning to think my dd is super sensitive. She definitely can't handle living in a gluten house. We have gone gluten free for everyone, but I really am suspecting she is super sensitive. How do you define super sensitive and how do you go about figuring out someone's threshold? (Obviously not exposing her to gluten, but I mean restaurants, processed foods, etc.)

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In my own case it was finally figured out when I kept getting 'glutened' by products that had ingredients that were gluten-free but prepared on shared lines and having obvious gluten reactions to gluten grain derived ingredients that are supposed to be gluten free by processing like distilled alcohols and vitamin E derived from wheat as examples.

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That' pretty much my story too. I kept getting siock from things that were supposedly gluten-free but were made on shared lines. So I avoid those products now. But I also found that I have multiple other fod intolerances that were causing symptoms and keeping me in a constant state of irritation and making me more sensitive always. Now that I have identified those other food intolerances and got them out of my diet, I have much less trouble generally. But I still avoid shared lines food products and most processed food also.

Hey, did anyone notice they made a new sub-forum for super sensitive psillys here? :D

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Hey, did anyone notice they made a new sub-forum for super sensitive psillys here? :D

It is new and was created on Wednesday. :)

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I can echo what the others said about getting sick from supposedly gluten-free items. In addition i would get sick from just walking by the door of working bakery or something like a breadcrumb on the counter-- Because of the we just don't have any gluten items in the kitchen. My wife may keep a bag of cookies in her junk room but she never brings them out in the open.

cross contamination is a big issue for me

I am beginning to think my dd is super sensitive. She definitely can't handle living in a gluten house. We have gone gluten free for everyone, but I really am suspecting she is super sensitive. How do you define super sensitive and how do you go about figuring out someone's threshold? (Obviously not exposing her to gluten, but I mean restaurants, processed foods, etc.)

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I'm glad to see a sub section for super sensitives!

I found out by trial and error too. I kept reacting to things that others didn't react to. It was extremely frustrating to read about how safe and delicious something was and then react to it. I reacted to something that was tested by the company to below 5 ppm even. Then I knew I was super sensitive. Even a little bite of a tested to below 20 ppm item got me. The best way to find out is to get healthy with a whole foods diet and then try adding various processed foods. But not more than one per week.

In my case, the only other food intolerance I've found is kumquat skin. Also lactose, but only if I get glutened. Other things like tomatoes and potatoes, I have found sources which I can tolerate and sources which I can't. There seems to be an issue with some pesticides, sprout inhibitors, fumigants and edible coatings used on produce. Sometimes it seems like it is wheat straw mulch which get me. I'm still figuring it out and it's been over 3 years now.

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I'm glad to see a sub section for super sensitives!

I found out by trial and error too. I kept reacting to things that others didn't react to. It was extremely frustrating to read about how safe and delicious something was and then react to it. I reacted to something that was tested by the company to below 5 ppm even. Then I knew I was super sensitive. Even a little bite of a tested to below 20 ppm item got me. The best way to find out is to get healthy with a whole foods diet and then try adding various processed foods. But not more than one per week.

Right now I am trying to eliminate everything because my dd's celiac antibodies are still highly positive and I really think she is not directly eating anything with gluten in it. It's so hard for me to explain to people and even my dh is frustrating. He thinks the problem is just that my other kids are messy and getting our house gluten-free will fix all problems. I do think that our whole house being gluten-free will help of course, but I still think there are other places besides our house she is reacting to. It's hard to figure out what she is reacting to of course with her antibodies still high. She still is complaining about her stomach hurting often. Anyhow, glad this subforum is here because I have a feeling we are going to belong here.

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I'm guessing I'm very sensitive...got negative blood test, but have had great improvement with all areas of my life since going gluten-free. However I've realised I can not touch gluten foods nor eat most foods deemed gluten-free without reaction. I'm in bed again today with sever gut pain and am coming to the conclusion I will not be eating anything but fruits veggies and meat nor use any skin care product that is affordable. I'm feeling lost in the Pandora's box of the gluten-free world.

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I am super sensitive, although I struggle with accepting this strange reality. I react to processed foods, products, distilled alcohol, flour particles in the air, and I suspect VOC's from cooking wheat products as well. And those are just my wheat issues. dry.gif I am still figuring it out and get CC'd everywhere I go so it has been hard for me to process everything. And sounding like a crazy person doesn't help. Well, I suppose I AM a crazy person when CC'd and in my funky foggy moods. Oh, did I mention I think I am in one now? :angry:

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Well, I suppose I AM a crazy person when CC'd and in my funky foggy moods.

You aren't alone there. It makes it so much harder to figure things out.

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Wow, you all said it so clearly. I am new and posted a question elsewhere on this subtopic a question related to this thread.

Our bodies are complex and celiac is just one part of the big picture. For example, I am MCS and have a list of 22 food allergies that I avoid also. It was so overwhelming to find out all this stuff after I was tested. And even harder to actually get my gut well. The literature says just stop eating gluten, but that wasn't enough for me. I have tried so many things to get well. Plus, I kept getting into gluten unknowingly. Argh! Fortunately, I have had about 6 years with rare exposure, until this past year.

For those of us who are zero tolerance people it is easy to see and feel what makes us sick. As soon as I am totally gluten free my gut quits hurting. Even putting my fingers in my mouth with a few wheat bread crumbs on them makes me very ill.

I am at a new phase of needing help again. That is why I looked for a forum.

I don't want to know how to substitute Twinkies or other junk. I just want to figure out how to eat healthy food and stay pain free.

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