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Montana Julie

Help - How Long Until You Get Better And What Sets You Off?

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Hi, All-

I was recently-diagnosed with celiacs, and I've been trying to learn everything I can.

I've been on my new diet about 1.5 months, and I've overall been lots better. However, I sometimes get recurrences of my old symptoms, and I really don't know why. I did make some mistakes early on (oats) but I'd like to think I got those ironed out.

I ate some Korean food with suspicious soy sauce (I asked, but I don't think they checked the label) on Sunday, and was "off" on Monday and I'm really hurting today.

Could that be the cause? Seems like it's been too long... How long do you guys go between eating something bad and feeling bad?

Also - for you "veterans" - how long does it take for the new diet to really work and for you to stabilize? Do you get recurrences? Perhaps stress-induced?

Anyway - I'll appreciate your help!!!

Thanks!

Montana Julie

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Most soy sauces are fermented with wheat. If you can ask to check the lable next time or bring your own wheat free soy sauce and have them make your food with that it might be safer.

For me it usually start with gas, bloating and fatigue within a few hours and then by about 8-12 hours the pain starts. This lasts for a few days. The diarrhea hits usually by day 2-3, and last a few days. The fatigue lasts usually for about 2 weeks and that is one of the worst parts about it. I also get DH (the Celiac rash) and the sores take usually a month or two to go completely away. I currently have some on my neck, back and thighs from a glutening 2 weeks ago. Needless to say I try really hard not to get glutened!

That was the first time in months that I have been glutened and I am still not sure how it happened. It was either at the VBS my kids were at that week or when we ate out. Most likely the VBS, since my daughter was already feeling bad the day before we ate out and the pain hit me wihile we were eating out, which didn't fit my normal pattern. I was assisting the kitchen at the church with my kids gluten-free snacks, but the CC potential was extreme! Expecially when they fed my daughter's gluten-free snack to someone else and had to make her a new one when I wasn't there...They swear they didn't give her any pretzels in her "trail mix", but I feel there must have been enough crumbs around to contaminate it. I could have picked up enough gluten just from being in the kitchen, but who really knows. In fact i didn't know for sure it was gluten until I got the rash. I ONLY get that from gluten. The other symptoms could have been something else.

Sorry I'm rambling...


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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