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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.

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

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. :)

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.)

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.

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.

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:

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.

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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    • trents
      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
    • Maura Gissen
      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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