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What Does Super Sensitive Mean?


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41 replies to this topic

#1 Di2011

 
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Posted 12 October 2011 - 03:03 AM

I am undiagnosed and can't afford medical treatment at the moment.

Sometimes we have to go with what works for us so please don't be afraid to experiment with diet and exposure despite what "tests" indicate.

I had problems earlier ( NO breakfast, no fan of pasta, pizza etc etc; bloating, gut sleeplessness etc etc etc etc) but working in a bakery for 9months (2010) created the real and obvious problem. I thought ingesting wheat / glutens might be my problem but after a few months off gluten I know now (I work in kitchens and with lots of breads and toast around I have been able to track) I can't handle the floating glutens in a normal kitchen. Eating now has nothing to do with my undiagnosed gluten/wheat problem but is about getting a new job out of the food business.

From reading a lot online and particularly on this forum it is really obvious that everyone has their own particular onset and ongoing issues with gluten. From reading experiences on this forum I think I probably have about a 18 months (MINIMUM) to get things sorted.

I have been researching and reading so much but what does "super sensitive" mean to you? There doesn't seem to be medical definition
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#2 dilettantesteph

 
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Posted 12 October 2011 - 03:14 AM

Sometimes it is called hyper sensitive to gluten. It means that you react to lower levels of gluten than the typical celiac.

The Fasano study used to establish the safe level of 20 ppm for typical celiacs excluded someone from the study because that participant suffered a full relapse. That person was probably a super sensitive celiac.

Super sensitives need to limit their consumption of gluten free processed foods. They often react to distilled gluten such as vinegars and alcohols. They may have problems with things stored in wheat paste sealed wood barrels. They may react to airborne gluten and need to stay away from bakeries. They probably need gluten free households. They need to be careful about toiletries and cleaning products.

They may even have problems with naturally gluten free foods depending on the growing and packaging practices. If shared equipment or fields, or gluten containing bug or weed controls are used, they could be a problem for super sensitives.

The medical community hasn't fully embraced the concept of super sensitivity, but it is getting much better. My definition comes from my own personal experience with the three super sensitive celiacs in my family.
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#3 RiceGuy

 
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Posted 12 October 2011 - 06:15 AM

I think what dilettantesteph said is accurate. For me, products labeled gluten-free can still be a problem, especially when grown, transported, or processed using shared equipment. The 20 ppm limit is too high for me. If I catch a whiff of wheat bread or toast, I know I'm gonna have a reaction.
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A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

#4 weluvgators

 
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Posted 12 October 2011 - 07:44 AM

I think that dilettantesteph sums it up nicely. We are a family with one parent and three children that are super sensitive. We react to gluten in places that typical celiacs do not. Some (maybe all?) of us in my family also have gluten allergy, so we get the privilege of recognizing gluten in ways that many celiacs may not.

One comment I do want to make is about this:

Super sensitives need to limit their consumption of gluten free processed foods.


I think that ALL celiacs need to limit their consumption of gluten free processed foods, as even Dr. Fasano states that a 20 PPM ruling only allows celiacs to eat about a pound of "gluten free" food per day - that is his general comment about general celiacs made based on a study that eliminated super sensitives and on such a severely small percentage of the population with celiac (97% of celiacs remain undiagnosed according to the University of Chicago Celiac Research Center).

But, yeah, as super sensitives, we react to gluten in places that the currently diagnosed celiac population has generally not yet complained about (or is it that the complainers were unable to fund the research to demonstrate their point?). Our doctors just shake their head in wonder and continue to document our gluten hypersensitivity. There really isn't much more to do than that at this point.

And there are some good companies out there trying to help celiacs achieve wellness while still maintaining our supplies of processed foods, so you don't necessarily have to get out of the food business all together. Yes, I know that they are rare, but there are some that I think are admirable in their efforts . . . not that I know the ins and outs of their business all together, but they seem to be taking extraordinary precautions in their efforts to produce safe food. And there is always the option of starting your own food business too! I have supported a local gluten super sensitive food manufacturer extensively over the past two years.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#5 T.H.

 
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Posted 14 October 2011 - 09:06 PM

At this point, my own personal definition is that:

The average celiac can have average servings of <20 ppm of gluten gluten-free food throughout the day and will not react.

The sensitive celiac can have <20 ppm gluten-free foods throughout the day, but may reach a threshold and react if not careful of quantity.

The super-sensitive celiac is unlikely to tolerate much, if any, of the <20 ppm gluten gluten-free products.


With all of these, I think there's really a range. I know some celiacs who have a clean bill of health, and they never seem to react, and yet eat at places that make other celiacs quite ill. I figure they're like the opposite of a super-sensitive celiac. ;)

I know that even with the group of folks I would consider super-sensitive, there is definitely a range. I know some who can tolerate foods that are 5 ppm of gluten, and I know some who get very ill on foods with that amount of gluten.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#6 violentlyserene

 
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Posted 22 October 2011 - 03:02 PM

Where do celiacs who don't react to anything but something like a piece of cake fall on that spectrum?
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#7 mushroom

 
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Posted 22 October 2011 - 03:21 PM

Where do celiacs who don't react to anything but something like a piece of cake fall on that spectrum?


My personal opinion is that that celiac would fall on the "playing with fire" part of the spectrum :unsure:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
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Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#8 Lisa

 
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Posted 22 October 2011 - 04:09 PM

Where do celiacs who don't react to anything but something like a piece of cake fall on that spectrum?



Yes, I agree with Mushroom! Being non-symptomatic, requires far more diligence.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#9 violentlyserene

 
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Posted 22 October 2011 - 04:09 PM

My personal opinion is that that celiac would fall on the "playing with fire" part of the spectrum :unsure:


If they ate it, certainly! If they don't react to anything less than that, does that mean they can put themselves in the average celiac category and be careful or is that more towards non reactive celiacs who need to be super careful?

I seem to have missed your point. I'm curious since that's roughly where I fall right now and can't tell whether I'm being crazy paranoid or sensible. My instinct says sensible but since it also says EAT ALL THE WHEAT...
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#10 mushroom

 
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Posted 22 October 2011 - 04:53 PM

If they ate it, certainly! If they don't react to anything less than that, does that mean they can put themselves in the average celiac category and be careful or is that more towards non reactive celiacs who need to be super careful?

I seem to have missed your point. I'm curious since that's roughly where I fall right now and can't tell whether I'm being crazy paranoid or sensible. My instinct says sensible but since it also says EAT ALL THE WHEAT...


The problem with celiac disease is that it is not just an autoimmune DIGESTIVE disorder. Celiac disease works on the nervous system, your joints, the thyroid, the pancreas, the skin... so many other body parts and you may not be aware what harm it is doing to you until you wake up one morning with rheumatoid arthritis, Type II diabetes, hypothyroidism, lymphoma, lupus, pancreatic cancer.

So the sensible celiac does his/her best to avoid ALL gluten. If a little does sneak in it is usually not too much of a problem unless you are a super sensitive where it can be a big problem. So you should never set out to eat any gluten. Some of us can eat products that are processed in facilities that also process gluten; some of us can't. Some of us can eat products that are made on the same lines as gluten products, because they clean the lines thoroughly first; some of us can't. Each person finds their own level of sensitivity. If you do not react then you will probably just have to decide how much of a risk you are willing to take.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#11 T.H.

 
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Posted 22 October 2011 - 08:49 PM

Where do celiacs who don't react to anything but something like a piece of cake fall on that spectrum?


I suppose if there was a 'not as sensitive the average celiac,' that might apply...it feels wrong to call people with this 'insensitive celiacs,' eh? :lol:

Or it could be someone who is a silent celiac, as damage can be done without any overt symptoms showing themselves.

However, I know that in a recent survey of multiple studies that looked at Celiacs' healing, there were some people who cheated fairly frequently on their diets and had healed villi and low antibody levels, so you never know, it could be that if there's super-sensitivity, there could be the opposite, too, you know?
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#12 Di2011

 
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Posted 26 October 2011 - 02:55 AM

I suppose if there was a 'not as sensitive the average celiac,' that might apply...it feels wrong to call people with this 'insensitive celiacs,' eh? :lol:

Or it could be someone who is a silent celiac, as damage can be done without any overt symptoms showing themselves.

However, I know that in a recent survey of multiple studies that looked at Celiacs' healing, there were some people who cheated fairly frequently on their diets and had healed villi and low antibody levels, so you never know, it could be that if there's super-sensitivity, there could be the opposite, too, you know?


A good comedic response! Thank you! I needed to read this today :rolleyes:
I had a few (4-5) small bits of squid that were supposed to be corn flour .. stupid me .. possibly not just corn and probably in a shared fryer. I started itching immediately, grumpy with the family soon after and scratched all the way home. I had a strange new symptom to add to the list - a nerve pain unlike any other I've had anywhere in my middle toe. The past 3 weeks I have been super strict and this included 4 days away again. My suitcase was about 2 kilograms of what I knew to be safe food, fruit (which I had to put in the bin because of quarantine :blink: ((another lesson)) ) I located shopping etc quick and now I am home four days later and the skin/nerve reaction/digestion etc are still in reasonably good order .. :D
People use to, a long time ago, like my sense of humour and maybe that is also recovering :D :D :D :) :blink: :P :) :D :D :D
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#13 T.H.

 
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Posted 26 October 2011 - 11:27 AM

I had a strange new symptom to add to the list - a nerve pain unlike any other I've had anywhere in my middle toe.


Oh man, that sort of thing is SO weird when it happens! I'll get some weird nerve pain in the joints, but it'll be just one joint in my pinky, or one area of my toe, etc... What the heck is up with that? So weird, isn't it?

People use to, a long time ago, like my sense of humour and maybe that is also recovering


I wonder how many of us end up feeling this way? I used to love to tell jokes and silly, snarky comments, and it all kind of faded away with the depression and pain. Just really in the last few months I notice I'm enjoying life more, laughing more, being able to play and be silly with my kids again. Makes me sad that they got to see so little of 'that' me all these years, but at least now I don't feel like I lost that part of myself forever, you know? I hope that the same turns out to be absolutely true for you, too! :-)
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#14 Charli61

 
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Posted 12 November 2011 - 09:49 AM

The more posts I read, the more AHA moments I have. Guess maybe I am pretty sensitive too, thought a lot of my issues (joint pain and nerve pain) were just 'me' Sad to say it appears lots of us have these issues. ;)
And, note to self............Keep smilin' Life is good!
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#15 beebs

 
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Posted 12 November 2011 - 02:06 PM

I am undiagnosed and can't afford medical treatment at the moment.

Sometimes we have to go with what works for us so please don't be afraid to experiment with diet and exposure despite what "tests" indicate.

I had problems earlier ( NO breakfast, no fan of pasta, pizza etc etc; bloating, gut sleeplessness etc etc etc etc) but working in a bakery for 9months (2010) created the real and obvious problem. I thought ingesting wheat / glutens might be my problem but after a few months off gluten I know now (I work in kitchens and with lots of breads and toast around I have been able to track) I can't handle the floating glutens in a normal kitchen. Eating now has nothing to do with my undiagnosed gluten/wheat problem but is about getting a new job out of the food business.

From reading a lot online and particularly on this forum it is really obvious that everyone has their own particular onset and ongoing issues with gluten. From reading experiences on this forum I think I probably have about a 18 months (MINIMUM) to get things sorted.

I have been researching and reading so much but what does "super sensitive" mean to you? There doesn't seem to be medical definition


Nothing to do with Super sensitives but because you have bakery experience maybe you should get a job at deeks - grain free bakery/cafe in Canberra. https://secure.deeks....au/index2.html
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HLA DQ8, gluten-free since January 2011




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