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Is There Anyone That Doesn't React When Glutened?

zus888

By zus888
in Coping with Celiac Disease

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jeslk Apprentice
jeslk
Posted

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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zus888 Contributor
zus888
Posted
  • Author

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.

love2travel Mentor
love2travel
Posted

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:

etta694 Explorer
etta694
Posted

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.

finlayson Explorer
finlayson
Posted

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.

jeslk Apprentice
jeslk
Posted

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.

LOVE the dog idea! And while the second idea may be cruel, I did tell my cousin that I was happy she showed symptoms because it would help me know what to avoid. :o I really am not a horrible person - I swear!

jeslk Apprentice
jeslk
Posted

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.

I'm still new to this so all I know is that I need to do follow-up testing in 6 months. I plan to see a celiac specialist around that time and ask about continued testing.

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Tigercat17 Enthusiast
Tigercat17
Posted

LOL!! Mark Dinga? :D

Small world!

Ha-ha! That's right! He's great! I always remember what he told me when I was first diagnosed -"It's just food." I can't tell you how many times I say that to myself! :D

It's nice to see someone here from my area! :)

Tigercat17 Enthusiast
Tigercat17
Posted

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.

Thanks etta! I'm a Huge animal lover! :)

zus888 Contributor
zus888
Posted
  • Author

If you have silent celiac, then how do you get diagnosed? Did you ever have any symptoms?

love2travel Mentor
love2travel
Posted

If you have silent celiac, then how do you get diagnosed? Did you ever have any symptoms?

My sister was told after during scope that she most likely had celiac disease - turns out she is gluten intolerant. So, I decided I had better get tested as there are a few distant family members with celiac disease. Turns out I'm another unlucky one! My doctor, husband, family and I were all shocked. But now the lifestyle has more or less become routine.

Tigercat17 Enthusiast
Tigercat17
Posted

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.

It's common to have the blood work done every six months, but I also think it depends on your insurance and your doctor. I know in the last 18 months my GI doc ordered the IgA Tissue Transglutaminase(tTG) test for me seven times in one year. It was positive for a long time before it finally started to lower, so my GI doc was following me closely. I really wasn't feeing that bad either. I just had a little sore throat from mild acid reflux, but at least after getting the results of the blood work I was able to see that I was still getting gluten in my diet somewhere. It took me a long time to figure it out. :blink:

Also, you can have false negatives and positives with this test as with all of the celiac blood work. I actually had a false negative the second time I had the blood work done, but thankfully my first result was 100% positive and plus I had a positive upper endoscopy result.

It's also a good idea to stick with the same lab for blood work since every lab has a different kit to test for celiac testing and results can vary.

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