Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Does Super Sensitivity Exist?


  • Please log in to reply

53 replies to this topic

#16 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 21 February 2012 - 06:11 AM

I am not convinced the ones some folks say are "not safe" are unsafe for EVERYONE.

I hope that I haven't given the impression that I believe that because I don't. Really, most celiacs don't have any symptoms even on a total gluten diet. Those are mainly the ones that haven't been diagnosed.

I hope you heal up fast. It has taken me quite awhile too.
  • 0

Celiac.com Sponsor:

#17 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 21 February 2012 - 07:08 AM

This argument about super-sensitivity exists IMO largely because other celiacs are afraid of it. What is more frightening than realizing that it's within the realm of possibility to react to the loaf of GFCO certified gluten-free bread in your refrigerator that you thought was safe? Or that there are people with celiac disease who cannot consider eating out... ever? It's much easier to tell the person who is threatening your entire, carefully-constructed, gluten-free world that they must be reacting to fat.

I think it's reasonable to remind people that super-sensitivity seems less common than reactions to other foods and food chemicals, and to remember to consider ALL the ingredients in what they ate. I think it's a jerk move to tell someone they are obsessing. Aren't we questioned enough by family, friends, and doctors?

Maybe some people just have a hard time conceiving that there are some more sensitive than they are. This could be especially so if they were very sick.

Unfortunately, that attitude can be very damaging to someone who is more sensitive. It can convince them not to consider the possibility of super sensitivity. That is what happened to me, and my son and I were sick for many additional months because of it.

This certainly isn't a one size fits all condition.
  • 0

#18 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 21 February 2012 - 07:34 AM

I am not complaining, but it does perhaps go to show how wide the spectrum of symptoms, and their severity is. And I know from reading many of your stories here how tough many of you have had it prior to diagnosis, and how hard you all work to find your way back to good health, in particular those of you who are suffering from super-sensitivity, multiple intolerances or other serious health conditions. It is your posts, current and past, who help me decide day-by-day and week-by-week how to manage my own healing process.


Those of us DXed later in life always take longer to heal, from what I have read and understand. And figuring out what ELSE may be going on is a bugger. :rolleyes:

It is so gratifying to hear you say that anything you read on here has helped. It helped me IMMENSELY. In fact, it was while researching my symptoms repeatedly for 3 years, that the links kept coming back to member stories on CELIAC.com. :)

I hope your symptoms continue to improve!
My doctor tells me "Be Patient". I am, I am!!...but it is not easy as I am in terrible pain and I cannot take a thing for it. :(

I think there is a wide spectrum of gluten sensitivity, but I am still learning and reading medical literature before I think I "must be" super sensitive. For all I know, I could have refractory sprue (God forbid) I am not "going there" in my head and neither is my doc!

So, we help each other and trust that in time, we will all get better.

I met a woman in her 70's who is gluten-free for 8 years now and she told me "THIS IS THE BEST I EVER FELT IN MY LIFE! Every year gets better and better! I had no idea what feeling great felt like--I was always feeling lousy--my whole life. I thought that was "normal".

She moves/talks/walks like a 50- year- old. :)

I said to hubs "Great--I'll be a healthy old broad!!" :lol:

Best wishes to you!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#19 Gemini

 
Gemini

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,153 posts
 

Posted 21 February 2012 - 08:55 AM

This argument about super-sensitivity exists IMO largely because other celiacs are afraid of it. What is more frightening than realizing that it's within the realm of possibility to react to the loaf of GFCO certified gluten-free bread in your refrigerator that you thought was safe? Or that there are people with celiac disease who cannot consider eating out... ever? It's much easier to tell the person who is threatening your entire, carefully-constructed, gluten-free world that they must be reacting to fat.

I think it's reasonable to remind people that super-sensitivity seems less common than reactions to other foods and food chemicals, and to remember to consider ALL the ingredients in what they ate. I think it's a jerk move to tell someone they are obsessing. Aren't we questioned enough by family, friends, and doctors?


Afraid of super sensitivity? How is that different than coming very close to death from this disease? That is real fear of which I and many others I have met faced. When I reacted to labeled gluten-free foods, I didn't automatically assume that it was from gluten. There are other ingredients in most gluten-free processed foods. It is always the smart route to investigate all possible sources of a reaction.

As far as being easier to tell a person they may be reacting to fat, maybe it is easier because it's extremely common for Celiacs to have trouble digesting fats, even after recovery. It's called pancreatic insufficiency and it's not a subject heavily discussed. Instead, people become overly focused on one thing...gluten contamination. There are many reasons people react to foods, which should remain the focus when someone becomes symptomatic, which you have been good enough to state in your post.

With regards to obsessing....to be perfectly honest, it happens. I don't regard it as a jerk move to state the obvious.
  • -2

#20 UKGail

 
UKGail

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 185 posts
 

Posted 21 February 2012 - 09:41 AM

IH - "My doctor tells me "Be Patient". I am, I am!!...but it is not easy as I am in terrible pain and I cannot take a thing for it."

I am sorry to hear this, particularly as you are so positive and upbeat in your numerous posts here. I think I read elswhere that you lost a lot of muscle when you were ill before diagnosis, and suffer from major nerve pain. I had a similar problem, albeit not as badly as you, about 9-10 years ago after a car accident. I had soft tissue damage in my neck, shoulders, spine and knees, plus some sort of nerve damage to one shoulder. I was in awful pain, couldn't move, couldn't look after the children or the home.

Normal physiotherapy didn't help as the inflammation just got worse whenever I excercised. Osteopathy helped a bit (but not enough for the money!), cranial osteopathy helped more, as it seemed to send messages to my body to calm down a bit. What really did the trick though was 2 things combined together 1) a gluten free diet - accidental, I was just trying to get healthy - and 2) specialist pilates-based rehab work.

Pilates did three things, firstly it trained my body to relax using gentle breathing exercises and gentle repetitive movements; secondly it worked on stretching out those tight muscles in those hard to reach places; thirdly it worked on building up the core muscles around the abdomen and spine (and the neck too). Once I got there I could restart a more general aerobic exercise regime. It was slow going, taking about two years, but it worked very well. The gluten free diet was a prerequisite, as once I gradually slid back to eating normally once I was fully better (and busy with work and family), the muscle inflammation came back, and stopped responding to the pilates regime.

Do you have someone works like this with you? If you don't, it might possibly help if you can find someone suitable?

Got to go. Got a report to write tonight.
  • 0

#21 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 21 February 2012 - 10:32 AM

Do you have someone works like this with you? If you don't, it might possibly help if you can find someone suitable?



Thank you so much for your thoughts! I DO have someone working with me and she employs a number of therapeutic modalities--including core strengthening. I have been cautioned to go slowly by several doctors (ortho, spine, GI celiac specialist) however, and so my rehab is tortoise- like :lol:
(I figure, it was he who won the race, however...)

If I overdo it, I am in burning pain. :unsure:

Thanks for your thoughts. May I PM you with questions I may have? I do not wish to hijack the thread from the original topic.
IH
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#22 UKGail

 
UKGail

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 185 posts
 

Posted 21 February 2012 - 10:43 AM

IH - please do. Happy to chat about my pet topic! There is more than I wished to put into a brief post.

And slowly is absolutely the way to do it, as you can only go as fast as your body can cope with!
  • 0

#23 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 21 February 2012 - 07:22 PM

Maybe some people just have a hard time conceiving that there are some more sensitive than they are. This could be especially so if they were very sick.

Unfortunately, that attitude can be very damaging to someone who is more sensitive. It can convince them not to consider the possibility of super sensitivity. That is what happened to me, and my son and I were sick for many additional months because of it.

This certainly isn't a one size fits all condition.

It sure isn't one size fits all! Maybe you're right about people just assuming all celiacs are the same.

I made the exact opposite mistake as you. I assumed I was reacting to traces of gluten and finally figured out I'm probably getting sick because of a dairy sensitivity. :lol:
  • 0

#24 T.H.

 
T.H.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,816 posts
 

Posted 21 February 2012 - 11:18 PM

I made the exact opposite mistake as you. I assumed I was reacting to traces of gluten and finally figured out I'm probably getting sick because of a dairy sensitivity. :lol:


SO hard to figure out this stuff sometimes, isn't it? I swear, it would be so much easier if we had, say, little Star Trek medical scanners we could use whenever we have some kind of reaction so we could know what was actually going on. I thought for the longest time that my gluten reaction was an allergy of some kind and my allergies were my gluten reaction. Then realized that it should be flipped around. :D And even now, I'm thinking a couple of the issues I thought were allergies might actually be sulfites.

I think one of the more frustrating challenges we celiacs have to deal with are those 'what the heck' reactions, the ones where we can't see why we're reacting, or what it's from. Is it an allergen, sulfites, chemicals, gluten? And WHAT got us? And how long was the delay before we reacted?

When you add in super-sensitivity, it makes it even more of a challenge. And I think that applies whether it's super-sensitivity to gluten or anything else (like an allergen). When a reaction is not simply to known ingredients but can involve incidental ingredients or cc, it's just another layer of information that one has to sort through while trying to figure out what is safe and what is not. And what the reasons are for reaction X vs. reaction Y vs. reaction Z, and whether it's to the same ingredient/chemical or not.

Sometimes I think that by the end of all of this, we each have more than earned a PhD in 'how our bodies work!' :D


When I reacted to labeled gluten-free foods, I didn't automatically assume that it was from gluten. There are other ingredients in most gluten-free processed foods. It is always the smart route to investigate all possible sources of a reaction.


I don't think anyone would disagree with your statement that it's a smart route to investigate all sources of a reaction. From what I've seen, most people here do eventually check out pretty much everything they can think of, and keep some in mind just in case it might prove to be an issue later. I think it's normal in the beginning to have that moment of thinking everything might be gluten, but it rarely lasts. People seem to expand their search pretty quickly to other foods and other physical conditions as possible problems. At least that's been my experience

But sometimes, things come back to gluten because, well, low level gluten cc is still a part of 'everything' that may need to be investigated. I don't think most here automatically assumes a reaction is from gluten until they've looked at lots of possibilities. But after some research into their own reactions and what they've contacted and consumed, sometimes gluten seems to be the best fit. And even with that, there's always the possibility that it could be something else that happens to coincide with the avoided gluten. I know that's something I keep an eye out for all the time, just in case there's something I'm unaware of that might change a previous conclusion.

With regards to obsessing....to be perfectly honest, it happens.


I would agree - it can happen. I think one problem is that none of us know when it actually is happening unless we know a lot more about someone's life than we typically do in the limited venue of an online forum. We don't usually know a lot about someone's medical history, their reactions, or their full diet. We don't usually know even a large part of what they explore OTHER than gluten, or what methods they've used to determine what they react to and why.

And without that, or at least asking about that, I don't see how we can make an accurate assessment of someone's choices or their mental health.
  • 1

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


#25 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 22 February 2012 - 06:25 AM

It sure isn't one size fits all!



This certainly isn't a one size fits all condition.


If I knew I was going to be quoted on the "there is no one size fits all" line, I would have copyrighted it. :lol: :lol:



I am just kidding, guys. :)
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#26 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 22 February 2012 - 06:29 AM

... finally figured out I'm probably getting sick because of a dairy sensitivity. :lol:


Same here.
As much as I had hoped I could put dairy back into my diet, I am thinking NOPE! It is very frustrating to have a limited diet.

I don't care about the gluten, but cheese? damn it!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#27 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 22 February 2012 - 09:06 AM

I don't care about the gluten, but cheese? damn it!

Me too, I was so glad to be able to add dairy back to my diet. I think I am very rare to be so sensitive and still be able to tolerate dairy. Of course, it is carefully sourced. Plus, when I get glutened, lactose intolerance is one of my most noticeable symptoms.
  • 0

#28 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 22 February 2012 - 09:36 AM

Me too, I was so glad to be able to add dairy back to my diet. I think I am very rare to be so sensitive and still be able to tolerate dairy. Of course, it is carefully sourced. Plus, when I get glutened, lactose intolerance is one of my most noticeable symptoms.



Interesting ! My doctor speculated my recent reversal of being able to tolerate dairy came on the heels of the accidental glutening I told you about. (I had kept it out the first 9 months gluten-free and then, I had introduced it just fine)I was doing all right....and then, I wasn't. :(
Makes sense.

Maybe dairy and I can be friends once more someday. :) I never give up hope. I have been accused of being an eternal optimist. :lol:
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#29 mysecretcurse

 
mysecretcurse

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 311 posts
 

Posted 22 February 2012 - 07:16 PM

Super sensitivity definitely exists.. I've been gluten free since 07... discovered my other sensitivities and finally got my situation under control in 09/10... (other sensitivities: soy, dairy, corn, and all other grains even rice).. found it was too much trouble reading labels and went entirely unprocessed/high raw in 2011.

My home is allergen free and I do not eat out so I basically have everything 100% under my control. I haven't had a reaction for a long, long time--and then I flew out to California to visit family for the first time in ages this past week. I made sure to prepare. Brought all my own spices. Brought all my own nuts/seeds that I know I don't react to that are processed in gluten free facilities (I've been using the same brands for ages with no issues)... but when it came to forks/plates/cookware I decided to just bring my own fresh sponges, soap that I know is safe, and deep clean my family's dishes and cookware. I thought I'd be fine.

I was so, so, so wrong. It only took two days before I had a severe, severe glutening. I know for a fact that the contamination came from either the plates, cutlary or possibly tupperware. No one was eating gluten at the table around me or anything and they had cleaned the house pretty well as my family understands my condition but they also didn't know it was THAT sensitive.I got so sick they almost had to take me to the hospital, it was terrifying. And devastating because I honestly had no clue I was THAT sensitive either. I never used to be.

How does this happen? I feel like the more I protect myself from it the worse the reactions if I am exposed. And I scrubbed and scrubbed everything I touched... all the pots and pans were stainless steel, not teflon or anything that might have held remnants... I just don't get it.

I keep hoping I will get less sensitive over time but no, the opposite seems to be happening.

After this incident I went out and bought an entire new kitchen set. Silverware, cutlary, plates, mugs, glasses, cookware, tupperware, everything. I am going to keep it in a box, across the house and have my family just store it for me for when I come to visit. It's the best I can do, but when I hear of people being contaminated just from BEING IN the house where there is gluten--that scares me so much.

I don't have any answers but thought I would share my experience.
  • 0

#30 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 22 February 2012 - 08:20 PM

I don't care about the gluten, but cheese? damn it!

Yeah, losing cheese is hard. Damn it is right! (I use stronger language in my head. LOL!) At least I figured out that canned coconut milk is good coffee creamer. I can survive with something decent in my coffee.
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: