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Is There Anyone That Doesn't React When Glutened?


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36 replies to this topic

#1 zus888

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Posted 05 March 2011 - 06:11 AM

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.
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Suzanna

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#2 zimmer

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Posted 05 March 2011 - 06:51 AM

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.
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Positive tTG IgA Ab, Gliadin IgA & IgG
Decided against biopsy
gluten-free 2/14/11

#3 adab8ca

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Posted 05 March 2011 - 07:31 AM

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.
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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

#4 Sharonmarie

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Posted 05 March 2011 - 08:02 AM

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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#5 jeslk

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Posted 05 March 2011 - 04:41 PM

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?
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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)

#6 Sharonmarie

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Posted 05 March 2011 - 05:11 PM

Not at all crazy! I know where your coming from! Most people I know think I am being paranoid when I mention cross contamination. It does make me feel badly!
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#7 zus888

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Posted 05 March 2011 - 07:31 PM

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.
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Suzanna

#8 love2travel

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Posted 06 March 2011 - 08:33 AM

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
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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.

#9 aeraen

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Posted 06 March 2011 - 03:40 PM

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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#10 love2travel

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Posted 06 March 2011 - 04:11 PM

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:
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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.

#11 jeslk

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Posted 06 March 2011 - 05:48 PM

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.
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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)

#12 aeraen

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Posted 07 March 2011 - 06:11 AM

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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#13 elk

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Posted 07 March 2011 - 06:36 AM

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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#14 love2travel

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Posted 07 March 2011 - 08:37 AM

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! :(
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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.

#15 jeslk

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Posted 07 March 2011 - 11:33 AM

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.
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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)


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