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 What do you do when Gluten sneaks up on you?

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Bete'avon!
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Number of posts : 578
Location : Philadelphia, Pennsylvania USA
How long since diagnosed? : 4 years misdiagnosed 15 years
Vegitarian : Partial
Registration date : 2007-10-02

PostSubject: What do you do when Gluten sneaks up on you?   Mon Oct 15, 2007 7:58 pm

I just thought we could get a little more personal here and help each other. These are our bodies and we know what we go through so we shouldn't be ashamed or too embarrassed.

I will start, by asking how long does it take when you have eaten gluten ( unknowinly or knowingly I guess) for you to react? Also after the initial trip to the bathroom, do you continue to have diaheria many times after? How do you treat it? What about the belching? do you continue to belch hours or the next day after or does that only happen when you have ingested it in some manner within a certain few hours? What about the rumblings?

does this act like a 24 hour flu with you or more or less?
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HadassahSukkot

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Number of posts : 254
Location : Germany
How long since diagnosed? : a long while now
Registration date : 2007-10-11

PostSubject: Re: What do you do when Gluten sneaks up on you?   Mon Oct 15, 2007 11:52 pm

well, for me the reaction is fast now.

It used to be hours or a day or more.

Now, if I touch it, I begin itching. If I put it in my mouth, it is like unto a reaction to food allergens like tongue swelling or mouth sores... that kind of thing.

I'd say it's moved so fast to minutes.


I didn't think to ask about the spices/salt that is put on fries at the Turkish Döner places in Switzerland and Germany because I knew the meat was ok and the fries GF... and not but a few minutes after I had ingested in June, I got to turning pale (I could feel it) and really sick. I had to beg DH to find a bathroom and fast, and I wasn't being choosy.. We crashed a restaurant next door and he ordered a soda. I have no idea how long I was in there, but it seemed like hours. Then we walked to the hotel. I thought I would ne'er make it.... and got the urge again. Shocked and the only bathroom was a public pay one at the tram pickup area about half way.. I got my money's worth and had to figure out how to use it all at once while hovering... there was a water problem (plus rain had gotten in) so nothing one did helped. I think the time limit in there was 10 minutes and by the time I made it out, there was a long line... lol!

DH had to practically carry me to the hotel from then, and I spent time between the bed laying flat with a cold washrag on my forehead and wrists, and running alternately to our bathroom.

And we couldn't figure out what it was to save our lives, until I sat down and began writing down everything we'd eaten scratch and Döner was the only difference!

it took about a month to begin bouncing back... August was when I started feeling better but wasn't quite "Up to speed" - and that is when my hands decided to manifest any time I was in contact with gluten, whether I ate it or touched it or whatever. I also noticed my acne comes back with a vengeance when I am in contact with Gluten...

I found if I smell glutenous products in a bakery, sometimes that can cause me a reaction - and I have gotten semi paranoid about touching surfaces in stores that have bakeries (like, 99.9% of food related grocery stores here in Germany), and I have considered getting gloves to assist.

The biggest issue is that my inlaws eat around the coffee table, so little crumbs can be found in the furniture or on the coffee table when I least expect it - and the only cream that was helping when I had reactions has a steroid, which is off limits now that I am pregnant. Rolling Eyes


My sister and dad also react "within seconds/minutes" but they have been on the diet longer than I have 'full time'.

This can't even compare to a "normal flu" (the kind that can last two weeks), it compares closer to Mononucleosis with me.... kicks me for a loop for about a month and then has long lasting effects.

It has really thrown a monkey wrench into my memory, as far as what I can remember, long term and short term, and once I have been glutened I am tired all the time ( Sleep ), grouchy (pms x3), and don't even want to be around people...

What it does to my intestines is so not fun. After I am sick, it feels like I have been cleaned out with sandpaper on my insides... Belching is the least of my worries. LOL, I get the icky farts to be honest; and my BM is like lead. (hope that isn't tmi) it takes a loooooong time for my gut to recover. I think it took about 3 months for things to be normal in that department like the DRs generally want to see and as far as regularity. As far as "the rumblings".. oh my.. that takes almost as long to get rid of... it's one way I know when I have gotten into something really bad, because "Normal rumblings" sound different and move differently.

What kills me though, is this is so rampant on my mom's side of the family and everyone writes it off as "(Family surname) Bellyaches"... and go no further. I am afraid for my youngest aunt and the cousin that is closest to my age. The Drs diagnosed "IBS" and has them on a medication, but did not persue it further and their intestines are in such bad shape.


One thing I've noticed, we in the Celiac community seem to be the most open society (other than Germans) about discussing bathroom issues lol!
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Yentl

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Registration date : 2007-10-08

PostSubject: Re: What do you do when Gluten sneaks up on you?   Tue Oct 23, 2007 1:19 am

It almost sounds as if the more you stay away from it, the more sensitive you get, I sure hope not, I make too many mistakes. Duh!


I'll have to buy stock in Toilet Paper

lol!
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Bete'avon!
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Number of posts : 578
Location : Philadelphia, Pennsylvania USA
How long since diagnosed? : 4 years misdiagnosed 15 years
Vegitarian : Partial
Registration date : 2007-10-02

PostSubject: Re: What do you do when Gluten sneaks up on you?   Wed Nov 28, 2007 6:09 pm

Somehow it got to me after the holiday. I was very careful what I made, so I know it wasn't that, but I was thinking more about my guests than myself and suggested to one that she bring a traditional crust pie in case they weren't satisfied with my offering. We never cut it but my husband had a piece on Sunday night and I think must have spilled some crumbs somewhere. On Monday I had some leftover Pumpkin soup and 1 1/2 hours later started with the pains and the belching. I am still belching today. I was very weak yesterday and demanded he take the culprit to work and eat it there. I found crumbs in the refridgerator, so I guess somehow one got into my soup. I didn't have diaheria until this morning so I guess it was a minute amount but still. It affected my whole body, I got very tired, and did basically nothing for the last two days.
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