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How Do You Know If Someone Is "super Sensitive"?


teresasupermom

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teresasupermom Rookie

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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ravenwoodglass Mentor

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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GFinDC Veteran

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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psawyer Proficient

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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kenlove Rising Star

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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dilettantesteph Collaborator

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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teresasupermom Rookie

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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lolipopins Newbie

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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Muffy Rookie

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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dilettantesteph Collaborator

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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padma Newbie

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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      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
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    • Moodiefoodie
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