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


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10 replies to this topic

#1 teresasupermom

 
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Posted 11 February 2011 - 06:55 AM

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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#2 ravenwoodglass

 
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Posted 11 February 2011 - 07:29 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 GFinDC

 
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Posted 11 February 2011 - 07:39 PM

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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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#4 psawyer

 
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Posted 11 February 2011 - 09:08 PM

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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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#5 kenlove

 
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Posted 11 February 2011 - 09:19 PM

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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"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

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#6 dilettantesteph

 
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Posted 12 February 2011 - 06:09 AM

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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#7 teresasupermom

 
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Posted 12 February 2011 - 06:29 AM

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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#8 lolipopins

 
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Posted 12 February 2011 - 07:31 AM

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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#9 Muffy

 
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Posted 12 February 2011 - 08:07 AM

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. Posted Image 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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...Muffy

Grain-free
Dairy-free
Soy-free
Canola Oil-free
Refined Fructose-lite

#10 dilettantesteph

 
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Posted 13 February 2011 - 06:01 AM

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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#11 padma

 
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Posted 14 February 2011 - 07:27 PM

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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