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Posted 22 September 2012 - 12:41 AM

[quote name='Adalaide' timestamp='1348060390' post='824286']
I wasn't sure what to say, but I guess I can tell you what it is like for me after consuming gluten accidentally. First, there is the GI symptoms that last for a few hours. Not so bad to be perfectly honest, but it is exhausting. Then, I'll really and truly be exhausted. I will sleep for more than half a day, usually more like 20 hours a day for about half a week maybe. When I can finally find the strength to keep myself upright in a chair for more than an hour at a time I'll still be so weak and tired (physically) that I can barely do anything for weeks afterward. I'll find myself going hungry because I can't find the energy to walk to the kitchen and actually make something and actually get a fork to my face afterward. There is nearly unbearable all over pain. Think like having the flu, only worse. I'll become so tender to touch that my husband loving resting his hand on my arm will be so painful I'll just start to cry. This symptom by itself is the reason I have a separate bed that I have to use for about 3-4 weeks if I've been glutened.

I promise, this is not the sort of thing you want to do to yourself on purpose. Not to know what it's like. Not to know if you are on the right track. I used to wonder that myself but as time wore on and I steadily improved a bit at a time I realized the small things I had been doing wrong but also all the things I had been doing right slowly added up. We've all done so much damage to ourselves for so long with gluten. We just need to have patience. I know it's hard. I assure you I am the queen of not having patience, but there is nothing to do in this case but simply wait. Put one foot in front of the other, get out of bed every morning with renewed purpose. Or with running feet and a full bladder... you know, whichever suits you. :P

Feel so sorry for you .
God Bless you
pray for speedy recovery
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Posted 22 September 2012 - 10:00 AM

I dont have Celiac, but I am Gluten Intolerant. Through the last 6 months of being tested and poked, prodded and sedated, I went through various stages of being gluten free. I went totally gluten-free for a while and felt amazing. My dr told me I was fine and gluten was NOT my problem, so I went back to eating and feeling lousy. I had another dr tell me the same thing, so I kept eating it.

I finally saw a new dr who actually believed in intolerance and told me to stop, but I didnt.

I think it took another 2 more months to convince myself to stop. I go back and forth with trying to eat a little "just to see what happens" and it is the same thing...every time. I get dizzy and exhausted within 15 mins, and then a few hours later, I get a screaming headache. I get so mad when I think of the drs who told me since I didn't have Celiac Disease then it was "safe" to eat gluten. Sure, I may not have intestinal damage, but this is NOT "ok"!!1 It is NOT ok to feel lousy after eating food. I have learned the hard way...that if you react negatively AT ALL then you are having a reaction to what you ate and you should cease to eat it. Plain and simple.

It is really hard. I KNOW it is good for me to avoid it. I HAVE alternative products to eat when I feel like having a muffin, or bread. I KNOW how to cook gluten free and thankfully for me, I am not affected by cross contamination but still..when I see a warm, gooey chocolate chip cookie..its hard not to cave. But Then I think of how I will feel, even the next day and at some point I have to tell myself...no.
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Posted 22 September 2012 - 10:07 AM

Yes, our own experience can trump what a doctor tells us. They do not know everything; only we know how our body feels. Researchers and doctors are only just becoming aware of non-celiac gluten intolerance.

You really must, if you do not wish further harm down the road, resist the temptation of that gluteny gooey chocolate; goodness only knows there is enough gluten free gluteny gooey chocolate fairly readily available, even if you have to wait an hour until you bake some :)
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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