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zus888

Is There Anyone That Doesn't React When Glutened?

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Just wondering if there is anyone out there that can't tell when they've been glutened? My dietitian says he has no symptoms and that there are many people who have no reaction to gluten when they eat it while on the gluten-free diet. But he also stressed that even though you may not "feel" it, there's still an autoimmune component going on that is a risk to your health.


Suzanna

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I don't have any reaction. I've been gluten-free for only a few weeks, though, and I understand that over time you become more sensitive. So I expect that might change for me in the future. It's nice not to have a bad reaction, but at the same time, it makes it very hard to know if you've had any CC or accidental glutening. I figure for me the only way to gauge my diet will be through blood tests.


Positive tTG IgA Ab, Gliadin IgA & IgG

Decided against biopsy

gluten-free 2/14/11

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Just wondering if there is anyone out there that can't tell when they've been glutened? My dietitian says he has no symptoms and that there are many people who have no reaction to gluten when they eat it while on the gluten-free diet. But he also stressed that even though you may not "feel" it, there's still an autoimmune component going on that is a risk to your health.

I think that is definitely true. I was diagnosed 6 months ago but only started getting sick about a year ago. Nothing before that but my villi were totally damamged, the GI doc said this has been going on for years.

After bloodwork but before biopsy last summer I went gluten-free for a month. Then I had to eat gluten for 6 weeks before the biopsy and I felt absolutely no different.


TTG >200 (normal <10)

IgA gliadin 24 (normal <11)

IgG gliadin 38 (normal <11)

Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy

Started gluten-free diet Aug 31, 2010

Only real symptoms are huge weight loss and neuropathy

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I am one of the few that doesn't react violently to gluten. I just had another upper endoscopy and my villi are very bad! Dr. said I am NOT on a Gluten Free diet! I am following the diet but I do suspect that I can not trust foods to be gluten free anyplace except home! Even though they claim to be. The symptoms I experience are constipation, psoriasis, and depression. Maybe dry skin is a side effect too. I don't know... I am feeling very discouraged.

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I don't react, and it has me stressed for two reasons: first, I'm worried that I won't know about cross-contamination and could be hurting myself without knowing it. And the second reason is that there are a few people in my life that insist that I shouldn't worry so much about cross-contamination since I don't have symptoms. They act as if I'm being paranoid for no reason.

And so I'm actually hoping that I'll start to develop symptoms so that I'll know - crazy, right?


Jess

Celiac Dx through blood work and biopsy, Feb. 2011

Also Dx Non-Hodgkin's Lymphoma (2006) and Thyroid Cancer (2011)

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I agree. I was just telling my friend today that I hope I'm the kind of person that reacts when glutened so that I KNOW if I'm being affected. If there's no reaction, I could be constantly glutened and not even know it and consequently be unable to remove the source.


Suzanna

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Just wondering if there is anyone out there that can't tell when they've been glutened? My dietitian says he has no symptoms and that there are many people who have no reaction to gluten when they eat it while on the gluten-free diet. But he also stressed that even though you may not "feel" it, there's still an autoimmune component going on that is a risk to your health.

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


<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.

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I just can't imagine how hard it would be to stick to gluten-free if there were not symptoms to remind me just WHY I have to do this.

Being reminded by the occasional glutening incident is what keeps me on the straight and narrow.

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I just can't imagine how hard it would be to stick to gluten-free if there were not symptoms to remind me just WHY I have to do this.

Being reminded by the occasional glutening incident is what keeps me on the straight and narrow.

It's extremely tough as I have to be super dilligent(well, we all do). But because there are no reminders sometimes I wonder if the biopsy results were actually mine?! :huh: Plus I enjoyed being on the gluten challenge a little too much - I was pigging out on all my favourites with no ill effects (except for my insides). My family members are extremely good but others don't get it because I don't get sick or look ill so always wonder why I bother. :angry:


<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.

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I just can't imagine how hard it would be to stick to gluten-free if there were not symptoms to remind me just WHY I have to do this.

Being reminded by the occasional glutening incident is what keeps me on the straight and narrow.

For me, being diagnosed with two types of cancer makes it VERY easy to stick to it. I mean, I HATE it and soooo wish i could eat some of my old favorites, but i haven't considered cheating yet (im still new to this, though <_< )

I can't prove that the cancers are related, but I'm not taking any chances. I think that's why I'm so paranoid about not knowing if I've been glutened.


Jess

Celiac Dx through blood work and biopsy, Feb. 2011

Also Dx Non-Hodgkin's Lymphoma (2006) and Thyroid Cancer (2011)

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Never thought I would say this, but I feel sorry for all of you who are asymptomatic. I certainly wouldn't want cancer to be my first symptom.

It's almost like those kids who do not feel pain and don't know when they are putting their hands on a hot burner.

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Do you have any symptoms, including those that aren't GI related? i.e., migraines, anxiety, palpitations, etc. ALL of my symptoms are neurological and now that I'm starting to see improvement after 6 months of being gluten free, I'm convinced most of my problems are gluten related.

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Do you have any symptoms, including those that aren't GI related? i.e., migraines, anxiety, palpitations, etc. ALL of my symptoms are neurological and now that I'm starting to see improvement after 6 months of being gluten free, I'm convinced most of my problems are gluten related.

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! :(


<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.

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Do you have any symptoms, including those that aren't GI related? i.e., migraines, anxiety, palpitations, etc. ALL of my symptoms are neurological and now that I'm starting to see improvement after 6 months of being gluten free, I'm convinced most of my problems are gluten related.

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.


Jess

Celiac Dx through blood work and biopsy, Feb. 2011

Also Dx Non-Hodgkin's Lymphoma (2006) and Thyroid Cancer (2011)

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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.


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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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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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


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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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! :)


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

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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??


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!!!

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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...).


<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.

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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.


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!!!

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: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:


<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.

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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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