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Finally

KMMO320

By KMMO320
in Coping with Celiac Disease

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KMMO320 Contributor
KMMO320
Posted

After months of being told I was possibly gluten intolerant but definitely NOT Celiac, my GI dr today tells me that after looking at all my labs,doing research, talking to colleagues and having another patient exactly like me, she is diagnosing me as having Celiac Disease. She believes it is what she calls "latent Celiac", that what I am experiencing is the very early stages, before damage has begun.

She had me on high doses of Vitamin D and prilosec for my ulcers..both of which have not been doing much. 4 months later, I am still very low on Vit D and I have constant acid refulx. Not to mention all the symptoms I complained about have not only NOT gone away, but have gotten worse.

Finally...I feel like I am being believed. FInally I dont feel crazy, or like a hypochondriac.

She is sending me to a nutritionist next week and wants to see me 6 months after I have been 100% gluten-free, and if I am still feeling lousy then we need to find out what else it could be, but if I am feeling better then we know I was right.

I could have done this without a Dr. I would have saved thousands (my Co-pays and deductibles have added up!)

but any way..there it is

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mushroom Proficient
mushroom
Posted

She is finally becoming celiac aware at your expense!! At least you have the consolation that she might test the next patient who presents with your symptoms. One by one, we can make a difference. :D

frieze Community Regular
frieze
Posted

what form of Vitamin D?

KMMO320 Contributor
KMMO320
Posted
  • Author

I am not sure? She just told me that my vitamin D is still low and to continue on my high dose supplement.

BabsV Enthusiast
BabsV
Posted

Congrats on a diagnosis. Isn't it nice to know that you aren't crazy and that those antidepressants the docs wanted to put you on wouldn't have helped. Or at least that was how I felt after a few months and bunches of dollars spent on tests!

I can tell you my wicked GERD symptoms finally did subside but it took several months gluten-free to get to that point...but now I'm off PPIs and don't have reflux problems. Yay!

Good luck and welcome to the club officially. :rolleyes:

KMMO320 Contributor
KMMO320
Posted
  • Author

Congrats on a diagnosis. Isn't it nice to know that you aren't crazy and that those antidepressants the docs wanted to put you on wouldn't have helped. Or at least that was how I felt after a few months and bunches of dollars spent on tests!

I can tell you my wicked GERD symptoms finally did subside but it took several months gluten-free to get to that point...but now I'm off PPIs and don't have reflux problems. Yay!

Good luck and welcome to the club officially. :rolleyes:

thanks...I think. lol

She originally wanted me on the prilosec long term. When I went gluten-free for a while over the summer, I stopped taking it and had NO reflux symptoms at all. I went back on bread (donuts and muffins are my weaknesses) and teh reflux came back with a venegence, it would keep me up at night, so I went back on the prilosec. She had also wanted to put me on meds for my anxiety, which isn't that bad but I know it could get worse, but I said no because I really only get anxious shortly after eating so I want to see if my anxious reactions is also gluten related, which I suspect it is. I was a crazy woman the other night. I could feel myself over reacting to something stupid yet I could stop.

pricklypear1971 Community Regular
pricklypear1971
Posted

thanks...I think. lol

She originally wanted me on the prilosec long term. When I went gluten-free for a while over the summer, I stopped taking it and had NO reflux symptoms at all. I went back on bread (donuts and muffins are my weaknesses) and teh reflux came back with a venegence, it would keep me up at night, so I went back on the prilosec. She had also wanted to put me on meds for my anxiety, which isn't that bad but I know it could get worse, but I said no because I really only get anxious shortly after eating so I want to see if my anxious reactions is also gluten related, which I suspect it is. I was a crazy woman the other night. I could feel myself over reacting to something stupid yet I could stop.

Yeah, I had unexplained reflux for a few years (actually more but it was off/on) that all meds did not fix. Then it went away....

I did not have glutening symptoms at first, going gluten-free. But guess what I get now????? Yep. Reflux.

Reflux explained.

Sigh.

I don't take meds, I'm just careful with my diet after I get hit - lots of water to reduce acid, no acidic foods, eat frequently, etc. Lasts about two weeks.

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frieze Community Regular
frieze
Posted

I am not sure? She just told me that my vitamin D is still low and to continue on my high dose supplement.

Is it by prescription, a small bright green "football"? If so, it is just short of useless, it is D2. Go to grocery/vitamin store and get D3.

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