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How Careful Do I Have To Be?

Aeva

By Aeva
in Coping with Celiac Disease

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Aeva Rookie
Aeva
Posted

I was diagnosed with celiac 3 months ago, after a lifetime of stomach issues. I seem to be improving a bit, but have these insane stomach cramps on and off, which I think may be constipation/gas pains, with no improvement or worsening when I eat. Is this typical, and if so, what can I do to relieve it?

Also, how do I know how careful I have to be? I know some people can't drink from the same water bottle as somebody who's eaten gluten...how do I know if I have to go that far? How serious is cross-contamination (will I be ok if I take the burger off a bun or use the same toaster as my non-gluten-free parents?) Since my body is still adjusting, it's hard to know if something is really making me sick, or if I'm just healing. Are there any basic rules that every celiac needs to follow in these such cases, or does it vary from person to person?

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Rizz Newbie
Rizz
Posted

I wish I could help with the cramping but have you looked back over sources of contamination? I have been gluten-free since June and started feeling better immediately. I know everyone's symptoms are different but my entire life was plagued by GI issues similar to yours. I was finally diagnosed at 38 and for a person who loves food this had been hard on me but I have never felt better and more alive. You have to be diligent.

Also, how do I know how careful I have to be? EXTREMELY, Cheating or skimping on your food standards can not be an option.

I know some people can't drink from the same water bottle as somebody who's eaten gluten...how do I know if I have to go that far? I was told to even verify my wife's lipsticks, hair products, and create a gluten-free area in my kitchen.

How serious is cross-contamination? As for me I have been told specifically contact to wheat anyway is bad, off a bun/grill/toaster all the same,I know it sucks. I have a separate toaster and container of butter for my gluten-free toast in the morning. Even using the same knife in the morning on my boys bagels would be a no-no. Some gum wrappers and even dusted latex gloves are dusted with wheat, so you guesses it, they're no-nos.

Are there any basic rules that every celiac needs to follow in these such cases, or does it vary from person to person? When in doubt unless you can verify it as being clean, AVOID IT. For the first couple of weeks I avoided everything unless I cooked it or bought it.

good luck

Yup Apprentice
Yup
Posted

Hi there,

I would completely avoid sharing the same toaster and drinks with a non gluten-free person. Your burger should never touch a non gluten-free bun. Your body is still getting gluten if you are having these issues.

I know it is SUCH a pain. Hang in there and I hope you feel better soon.

Skylark Collaborator
Skylark
Posted

I was diagnosed with celiac 3 months ago, after a lifetime of stomach issues. I seem to be improving a bit, but have these insane stomach cramps on and off, which I think may be constipation/gas pains, with no improvement or worsening when I eat. Is this typical, and if so, what can I do to relieve it?

Also, how do I know how careful I have to be? I know some people can't drink from the same water bottle as somebody who's eaten gluten...how do I know if I have to go that far? How serious is cross-contamination (will I be ok if I take the burger off a bun or use the same toaster as my non-gluten-free parents?) Since my body is still adjusting, it's hard to know if something is really making me sick, or if I'm just healing. Are there any basic rules that every celiac needs to follow in these such cases, or does it vary from person to person?

Basic rules are avoid every single bit of gluten you know about because some of the dratted stuff is going to sneak in anyway. Tiny amounts probably won't hurt you (nobody knows for sure how much gluten it takes to do villous damage), but the tiny amounts you don't know about plus tiny amounts you DO know about will start to add up.

Removing the bun from a burger leaves crumbs on your food, as does using the same toaster. Drinking from a water bottle with someone eating gluten may not make you sick, but it's still not the best idea unless you have no other choice.

Aeva Rookie
Aeva
Posted
  • Author

One thing I'm also really worried about is kissing. I know several people that get "glutened" if they kiss their significant other, and they've just eaten pizza/been drinking beer, etc. My boyfriend is very diligent about making sure I'm safe when we go out to eat (and his caterer mother is a sweetheart and always makes me gluten-free meals), but I'd feel so horrible making him brush his teeth before he can kiss me after every sip of beer! Is that type of thing necessary?

Thanks for all the great answers, guys!

mushroom Proficient
mushroom
Posted

Yep, I'm afraid a gluteny kiss could get ya. You could always talk him into drinking Redbridge though ;) It might be worth it for him.

Aeva Rookie
Aeva
Posted
  • Author

He doesn't mind Redbridge, but he is a connoisseur of all things alcohol, especially beer (just got his bartenders licence last week actually), and I wouldn't make him give that up. I guess we'll just have to be extra careful. Grrrr.

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Skylark Collaborator
Skylark
Posted

He doesn't mind Redbridge, but he is a connoisseur of all things alcohol, especially beer (just got his bartenders licence last week actually), and I wouldn't make him give that up. I guess we'll just have to be extra careful. Grrrr.

Time to teach him to appreciate fine wine and good scotch. ;)

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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
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      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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