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What Level Of Sensitivity To Trace Amts Is This?

sreese68

By sreese68
in Coping with Celiac Disease

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sreese68 Enthusiast
sreese68
Posted

I've had a person with celiac and a person with gluten intolerance say I sound "really sensitive" when I've told them the following, and I'm wondering if I am or if I'm more on the "normal sensitivity" end. I KNOW I'm not super sensitive after reading some of the posts by the people who really ARE super sensitive! Anyway, on July 4th, my daughter spent a long time in the petting zoo at our local fair. She fed the animals a lot. Without my knowledge, she opened, drank out of, and closed our shared water bottle. Unfortunately, I drank right after her and got glutened, which lasted about 6 days. So her glutened hands touching our water left enough of a trace to get me.

I ate my usual diet at home, and we have a gluten-free home, so no risk of cc there. And I know I didn't react to another food because gluten gives me neuro problems - no other food does. I've only been gluten-free for a few months. Does this level of sensitivity sound normal? Oh, I may have gotten the smallest of trace amounts on Thursday while drinking my coffee from home in the crumb-filled waiting area at my kids gymnastics class. Or maybe from the grocery store afterwards. I only reacted for a couple of days that time. Not sure, but won't bring my coffee again!

And will my sensitivity decrease as I heal??

Thanks! Sorry to go on for so long! Can't seem to be able to keep my posts short! LOL!

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Harpgirl Explorer
Harpgirl
Posted

I've had a person with celiac and a person with gluten intolerance say I sound "really sensitive" when I've told them the following, and I'm wondering if I am or if I'm more on the "normal sensitivity" end. I KNOW I'm not super sensitive after reading some of the posts by the people who really ARE super sensitive! Anyway, on July 4th, my daughter spent a long time in the petting zoo at our local fair. She fed the animals a lot. Without my knowledge, she opened, drank out of, and closed our shared water bottle. Unfortunately, I drank right after her and got glutened, which lasted about 6 days. So her glutened hands touching our water left enough of a trace to get me.

I ate my usual diet at home, and we have a gluten-free home, so no risk of cc there. And I know I didn't react to another food because gluten gives me neuro problems - no other food does. I've only been gluten-free for a few months. Does this level of sensitivity sound normal? Oh, I may have gotten the smallest of trace amounts on Thursday while drinking my coffee from home in the crumb-filled waiting area at my kids gymnastics class. Or maybe from the grocery store afterwards. I only reacted for a couple of days that time. Not sure, but won't bring my coffee again!

And will my sensitivity decrease as I heal??

Thanks! Sorry to go on for so long! Can't seem to be able to keep my posts short! LOL!

Honestly, it may depend on the perspective of the person you are talking to. I read in Living Gluten-Free for Dummies that even people with celiac can handle a certain amount of gluten, but that amount is a fraction of a crumb. My grandmother has celiac, but apparently only thinks of it as a GI issue. When I told her about my reactions (I too got sick after drinking from a straw that I didn't realize my hubby drank from), she said the same thing, "Oh, you're extra sensitive." However, I can see now that she has always had brain fog and severe joint/muscle pain, and she is not at all careful about cc. She has even gone back to taking regular wheat communion at church because its not enough to make her "sick". After reading more in these forums as well, I think that if she had been truly gluten-free for longer, her GI symptoms may have become more intense with each glutening. My last glutening lasted 2 more days than the previous one (5 days). But I've only been gluten-free for about 5 weeks.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I really think it is all relative. There isn't really a "normal" level of sensitivity but what you described are things I have experienced (the water bottle thing and stray crumbs in a non-gluten-free environment). I consider myself to be very sensitive but I know there are people MORE sensitive and LESS than I am. The thing is, with people you talked to that said you were more sensitive than they are it could be one of two realities: 1. You really ARE more sensitive than them and need to be more careful OR 2. They don't take their diet as seriously and still think certain symptoms are "normal" for them or attribute those symptoms to another health condition they have. In my opinion number 2 reality is more likely. Not many people are willing to go to the lengths some of us go to avoid CC and many people diagnosed with celiac have other health conditions that can cause similar symptoms. A few people may be asymptomatic and so they don't avoid cc as much but in my experience most of the celiacs I meet in real life are not as careful with their diet as I am with mine and they attribute symptoms to other things. I knew someone once that only had DH as a symptom. She was completely gluten-free when she made her own food but if she went to someones house and they offered her something that "looked safe" (no visible flour, bread, etc) she would eat it. She had multiple miscarriages and a host of other health issues and she could never figure out why. I tried to explain to her that gluten can cause other things besides DH or digestive problems. She looked at me like I was crazy and said she wasn't that sensitive so I never brought it up again. People can get really defensive when you try to tell them how to eat. I think the best you can do is tell people YOU are supersensitve, explain all that YOu have to avoid and (if they are interested) gush about all the symptoms that have gone away since you went "strictly gluten-free".

love2travel Mentor
love2travel
Posted

CC makes me paranoid. Nearly OCD in a way. I am the strictest celiac I know (in person, not on these boards because most of us are VERY strict!). As I have been asymptomatic as far as GI symptoms go it is difficult because I do not know yet whether I have been glutened. (I was once accidentally a few months ago but did not get sick at all. I only found out after a company that had told me on the phone their product was safe and it was only after I consumed it they contacted me to apologize - it was NOT gluten-free after all!) I cannot tell and am terribly in tune with my body. As I suffer from other ailments (i.e. chronic pain, insomnia and fibromyalgia) I am in constant pain. I just cannot ever escape it. However, I do believe they are linked to celiac so am really praying I see an improvement in all these in the future. So, although I may not be as sensitive as others I treat it as though I am. And there is no way I am deliberately ingesting gluten to see how I would react. It is not worth it to me. Nope - cannot do it! People on this board frequently seem to become more sensitive as time goes on and I am not willing to find out just how sensitive I am.

anabananakins Explorer
anabananakins
Posted
I am the strictest celiac I know (in person, not on these boards because most of us are VERY strict!)

This. And it's actually quite scary because we're only a teeny fraction of the people out there. I ate lunch with two people with celiac in the months before I went gluten free. Looking back now, at how they handled that, I don't think I'd want to eat at one of them's house. On the other hand, I have a friend who I do trust even though she's not gluten free, because she's demonstrated time and again that she gets it and she never makes me sick.

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