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Is There Anyone That Doesn't React When Glutened?


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36 replies to this topic

#16 etta694

 
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Posted 07 March 2011 - 03:00 PM

Had migraines but they have stopped about 10 years ago, thankfully. One thing that is likely related is having several miscarriages (no children). I also have a severe back injury (3 years ago - herniated discs, myofascial pain, IT band syndrome, sciatica and so on) and that pain is growing worse. Must usually stand up to eat and lie down on the floor to watch TV. If I go anywhere in a vehicle we must stop every ten minutes to stretch. Can rarely go to church because it is so hard to sit. When I do, I must constantly walk around in the back. Going to a restaurant is doubly bad because I must sit with a lumbar support and get up and walk around every ten minutes, let alone coping with gluten-free. Have to get up at night frequently to walk around. Although I had an actual injury perhaps the increasing pain is due to celiac disease. Not sure on that one.

Some medical people have told me they believe I also have fibromyalgia - am awaiting to see yet another surgeo on that. Our waiting lists in Canada can be 12-18 months! I would give almost anything for my back/legs/shoulders et.al. to be healed. ;)

So, I have had not one single day without lots of pain in three years but thankfully no tummy stuff, rashes, migraines. I indeed can empathize with those who have pain. It is debilitating and downright nasty. As I have great difficulty with getting much exercise I have also gained weight which doesn't help out one little bit! :(



I hear you on wait times.. I'm from SK. One of the things that has changed for me in 9 mths is that I went from feeling like 80 to feeling like 35..okay.. 50 (but a GOOD 50) again. It would take me a minute or 2 just to straighten up from sitting and all my joints were sore and stiff. I still have some soreness and stiffness but not anything like I did before starting the diet.
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Anemia and IBS through my life
2005 Joint pain, exhaustion, general feeling of not being well 2006 Beginning of testing for everything but Celiac 2008 Bloating, more muscle stiffness, feeling sicker, more exhausted-testing 'normal' 2010 March insides begin to shut down, cough that won't go away 2010 June Colonoscopy, Endoscopy, biopsy - all show no problems
Self diagnosed gluten intolerant - went gluten free. Within 3 days feeling better.
After 5 days - insides began to move
Now - feel better than I have felt for 15 years (except when I gluten myself.. which I'm good at)

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#17 Gail Marie

 
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Posted 07 March 2011 - 06:23 PM

it takes a lot of gluten for me to experience symptoms. I ate some rice krispy treats the last week of Dec. 2010. I ate like the whole box, yes, I pigged out! Rice Krispies has malt flavoring which is made from barley :(, found that out a lil too late. The last week in Feb. I realized I was "begining" to feel a lil better. That's a long time! Anyone else take that long to start to feel better? of course it was LOTS of gluten. My symptoms are mostly fatigue and some constipation. Which Mag 07 works wonders for constipation.

Health & Happiness to all!
Gail
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#18 etta694

 
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Posted 07 March 2011 - 07:29 PM

A few tiny Ichiban noodles in one bite of salad locked me up for 3 weeks.... I'm not surprised that you were out of commission for 2 mths after a whole box. It feels good when it's over... :P
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Anemia and IBS through my life
2005 Joint pain, exhaustion, general feeling of not being well 2006 Beginning of testing for everything but Celiac 2008 Bloating, more muscle stiffness, feeling sicker, more exhausted-testing 'normal' 2010 March insides begin to shut down, cough that won't go away 2010 June Colonoscopy, Endoscopy, biopsy - all show no problems
Self diagnosed gluten intolerant - went gluten free. Within 3 days feeling better.
After 5 days - insides began to move
Now - feel better than I have felt for 15 years (except when I gluten myself.. which I'm good at)

#19 Tigercat17

 
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Posted 08 March 2011 - 09:47 AM

I don't think I do. The only thing I can point to is that I've been slightly depressed for a few years now - I've always attributed it to the stress of my first cancer diagnosis, plus the daily stresses of work, kids, etc. - now I'm wondering if maybe the celiac has something to do with it. Even if it does, though, it really is not much to speak of - a little bit lower energy and a bigger desire to watch TV :rolleyes: - but I've continued to be very functioing.



I, too don't have violent reactions when I get glutened, but I've learned that I'm really sensitive now and I can't eat a lot of gluten free processed products. I usually get a sore throat and a slightly tender stomach, but that's usually it. I've been gluten free for 18 months now, but I know I've had a form of silent celiac disease for at least twenty years. I didn't have any GI symptoms until three months before I was diagnosed. And it was just acid reflex, but it was really bad. But I was always sick and always going to the doctors for one thing or another. I also had trouble with feeling tried, depression along with anxiety and insomnia. And I was being closely followed for lymphoma for the last eight years and then in 2009 I was diagnosed with a rare form of thyroid cancer. It wasn't until a year after I had the radiation treatment that I finally was diagnosed with celiac disease. I had to get deathly sick for that diagnosis.

I do think I've gotten more sensitive to gluten now. I do keep a food journal and I document all of my reactions, but they are very mild -just the sore throat and tender tummy. I always get the sore throat the next day after I get any cross contamination. It takes a while for my body to react, but everyone's so different.

The good news is a lot of these health problems will go away! :) I haven't had a sinus infection or bronchitis since going gluten free! (I was getting them 4 times a year) I sleep great, depression and anxiety are gone. And I don't have to get CT scans anymore for the docs to watch me for lymphoma. I've been cancer free for almost three years now! I feel so much healthier!


zus888- I think we might have the same dietitian! :)
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Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09

#20 zus888

 
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Posted 08 March 2011 - 11:43 AM

LOL!! Mark Dinga? :D

Small world!
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#21 catsmeow

 
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Posted 08 March 2011 - 01:22 PM

Absolutely no clue if I have been glutened. I almost never eat out, am extremely cautious with CC and incredibly vigilent with whatever I eat. However, I am concerned that what if there is something I am ingesting such as my lipstick or some weird thing like that is not truly gluten-free. I was TOLD it is but without a reaction how the heck do I truly know for sure? My dietician told me it is more dangerous for silent celiacs than those with lots of symptoms. Having said that, I feel bad for those who get so terribly ill - that would be awful.

When I was on my 5 month gluten challenge I felt soooooo good eating gluten. That is what makes this extra tough for me. :( So I try to envision my little villi all straight like little soldiers that are working hard inside me. :D



What is CC??
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You've cat to be kitten me right meow

Wheat Allergy-April 2010
Gluten Intolerant-April 2010
Dairy/casien intolerant-Aug 2012
Lactose intolerant- Aug 2012
Soy Intolerant-November 2012
October 2012- I learned that I am 1/2 Irish with a strong family history of Gluten Intolerance/Celiacs. I will never know If I am Celiac because I will never eat gluten again in order to test postive, it's poison and I do not ever want to feel the way I felt before implementing the gluten free diet EVER again!!!

#22 love2travel

 
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Posted 08 March 2011 - 02:19 PM

What is CC??



CC=Cross Contamination (i.e. making gluten crepes without thoroughly cleaning before using the same crepe maker to make gluten-free crepes and so on...).
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#23 catsmeow

 
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Posted 08 March 2011 - 02:51 PM

CC=Cross Contamination (i.e. making gluten crepes without thoroughly cleaning before using the same crepe maker to make gluten-free crepes and so on...).



Thank you.....I hate cross contamination!!!! It's got me in trouble to many times!

I can't believe I didn't figure that out, I was putting the word Celiac with it and trying to figure out what the other C was..... I'll have to learn the boards acronyms.
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You've cat to be kitten me right meow

Wheat Allergy-April 2010
Gluten Intolerant-April 2010
Dairy/casien intolerant-Aug 2012
Lactose intolerant- Aug 2012
Soy Intolerant-November 2012
October 2012- I learned that I am 1/2 Irish with a strong family history of Gluten Intolerance/Celiacs. I will never know If I am Celiac because I will never eat gluten again in order to test postive, it's poison and I do not ever want to feel the way I felt before implementing the gluten free diet EVER again!!!

#24 love2travel

 
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Posted 08 March 2011 - 03:26 PM

:lol:

Thank you.....I hate cross contamination!!!! It's got me in trouble to many times!

I can't believe I didn't figure that out, I was putting the word Celiac with it and trying to figure out what the other C was..... I'll have to learn the boards acronyms.


No worries! I remember wondering what it was, too (as well as DH and a whole bunch of others!). :lol:
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#25 c12

 
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Posted 08 March 2011 - 04:06 PM

Severity of the disease definitely varies from person to person.

If I eat something that has gluten in it as a hidden ingredient, my symptoms are usually subtle...fatigue, brain fog, irritability, skin break outs - all of this usually lasting only a few days. It's more annoying than debilitating. I only get the obvious gastrointestinal sickness if I accidentally eat significant amounts of gluten - which truthfully almost never happens.

And I'm not sensitive at all to cross-contamination.
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#26 jeslk

 
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Posted 08 March 2011 - 06:26 PM

Severity of the disease definitely varies from person to person.

If I eat something that has gluten in it as a hidden ingredient, my symptoms are usually subtle...fatigue, brain fog, irritability, skin break outs - all of this usually lasting only a few days. It's more annoying than debilitating. I only get the obvious gastrointestinal sickness if I accidentally eat significant amounts of gluten - which truthfully almost never happens.

And I'm not sensitive at all to cross-contamination.



This is part of the confusion, though. My understanding from doctors and nutritionists is that EVERYONE is sensitive to cross contamination - some just don't have immediate outward symptoms (in my case, I'm really worried that the damage could be worse). I'm pretty sure I've read that the disease is equally sever for everyone, some of us just don't know it is happening.
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Jess

Celiac Dx through blood work and biopsy, Feb. 2011
Also Dx Non-Hodgkin's Lymphoma (2006) and Thyroid Cancer (2011)

#27 zus888

 
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Posted 08 March 2011 - 06:54 PM

This is part of the confusion, though. My understanding from doctors and nutritionists is that EVERYONE is sensitive to cross contamination - some just don't have immediate outward symptoms (in my case, I'm really worried that the damage could be worse). I'm pretty sure I've read that the disease is equally sever for everyone, some of us just don't know it is happening.


There was a recent symposium in San Diego (I think) and they discussed this very issue. I think the average for side effects is 50 mg of gluten, but one person was affected by 10mg. I can't remember if this was looking specifically at villi damage or at just outward symptoms, like nausea, cramping, etc. I would expect that if it's an immune system response that it shouldn't matter the amount because any contact would trigger it. I mean, a virus is pretty freakin' small and it triggers the immune system. I'm no immune system expert, though, so who am I to say one way or the other.

I do agree though, that it is serious for everyone. I think the one poster said it well with the silent celiacs having it harder. They can't outwardly tell if they're being glutened on a regular basis since they have no outward symptoms to tell them so. Whereas, someone who is particularly sensitive will be able to know quickly if they've been glutened with even a small amount and can take measures to avoid the source in the future. Although both subjects will have and autoimmune response against the villi in their small intestine, only one will know about it and be able to avoid it in the future.
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#28 love2travel

 
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Posted 08 March 2011 - 07:00 PM

There was a recent symposium in San Diego (I think) and they discussed this very issue. I think the average for side effects is 50 mg of gluten, but one person was affected by 10mg. I can't remember if this was looking specifically at villi damage or at just outward symptoms, like nausea, cramping, etc. I would expect that if it's an immune system response that it shouldn't matter the amount because any contact would trigger it. I mean, a virus is pretty freakin' small and it triggers the immune system. I'm no immune system expert, though, so who am I to say one way or the other.

I do agree though, that it is serious for everyone. I think the one poster said it well with the silent celiacs having it harder. They can't outwardly tell if they're being glutened on a regular basis since they have no outward symptoms to tell them so. Whereas, someone who is particularly sensitive will be able to know quickly if they've been glutened with even a small amount and can take measures to avoid the source in the future. Although both subjects will have and autoimmune response against the villi in their small intestine, only one will know about it and be able to avoid it in the future.



That is my understanding as well - it is severe for all of us. I am one of the silent celiacs who finds it very difficult - what if I am using a product that is causing serious internal damage and I have no idea? Scary and sobering thought. :huh:
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#29 etta694

 
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Posted 09 March 2011 - 06:20 AM

Makes you want a 'gluten service dog'. SNIFF Rags! and he would detect all the gluten in the house. Unfortunately... they are not sold at Walmart.
Or if we could travel in pairs, one sensitive with one that doesn't have symptoms...but that's just cruel.
I love your avatar Tigercat17.
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Anemia and IBS through my life
2005 Joint pain, exhaustion, general feeling of not being well 2006 Beginning of testing for everything but Celiac 2008 Bloating, more muscle stiffness, feeling sicker, more exhausted-testing 'normal' 2010 March insides begin to shut down, cough that won't go away 2010 June Colonoscopy, Endoscopy, biopsy - all show no problems
Self diagnosed gluten intolerant - went gluten free. Within 3 days feeling better.
After 5 days - insides began to move
Now - feel better than I have felt for 15 years (except when I gluten myself.. which I'm good at)

#30 finlayson

 
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Posted 09 March 2011 - 06:53 AM

I don't have any symptoms either when I'm glutened. I'm assuming at some point I must have been since I live in a house with 4 non-celiacs. My question to other fellow silent Celiacs, is do you get tested regularly, via bloodwork, and if so, how often do you do this? I'm assuming that is the only way to tell how things are going, although I realise you can't get tested every week (which would be great!). I find not showing symptoms one of my greatest stresses, because any slight change in the way I feel makes me wonder if it's gluten.

It's comforting to know there are others like me out there - I almost feel envious of those who react violently. At least you can backtrack and hone in on the culprit - not that I would wish that on anyone.
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