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Years Of Searching For An Explanation


njmpm18

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njmpm18 Newbie

I'll try to be brief, and I REALLY appreciate everyone's time. I'm slowly realizing that gluten might be my problem. Here are some reasons...

1) bloating and gas my whole life, 4 years straight of athlete's foot in high school

2) college and after - complete sickness after drinking, especially hard alcohol, no matter what amount

3) 2006 - age 37, horrible stomach virus with C and D. Extreme pain in left stomach region, onset of twitching, fatigue,weakness lasted months. Tested negative for everything under the sun. Endo negative, neuro stuff negative, thyroid negative. Told will always have twitching/fatigue/tingling (called benign fasiculation syndrome by neuro). Left side of stomach/back still hurts sometimes.

4) 2007 - awful GERD, swollen eustachian tube for 5 months. finally did another Endo for which I fasted for 24 hours. The fasting cured me. Seriously. And my twitching syndrome went away for awhile.

5) 2008 - High stress time and my stomach just went out on me. C and D for weeks, so I just stopped eating. Lost 15 pounds but it cured me, and my twitching syndrome went away for 4 months.

6) When I eat a bagel I get dizzy and have to lie down (that's sounds weird, but it's true)

7) Not a cavity in my LIFE but just had a small one that turned into a root canal.

In short, I think my problem is inflammation. And Im beginning to think that my inflammation is caused by gluten. Here are my questions. Would the GI doc have picked up on that during my 2 endos? If I went gluten free for a few days and then had wheat and it made me REALLY sick, is that further indication that gluten is my problem?

Thanks so much for your opinions! I've had enough of docs to last a lifetime and they were unable to offer me answers, so I'm convinced I will hunt this down by myself!


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Lisa16 Collaborator

An intestinal biopsy can miss celiac.

If I were in your shoes, I would go completely gluten-free for at least one week and watch what happens. If you get better, then you know. Sometimes it takes longer than 1 week, esp[ecially if you accidentally get a little bit.

The idea of going gluten-free and then trying wheat again (in large quantity) will also tell you if you have aproblem with it.

I iwsh you the best of luck.

Oh yes, the symptoms you describe could be celiac (but not necessarily). So if you do well gluten-free, then you have your answer. You might not know if you are celiac or gluten intolerant, but in the end it doesn't matter at all. Same outcome.

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      Thanks for the reply. 
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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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