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narcissa_bell

Scared That Its Not Celiacs?

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Just had blood work done today (waiting on results) and I have been scheduled for an endoscopy a week from now. This all started because I have been losing my hair like crazy, im bloated CONSTANTLY, always sleepy and foggy, etc... As a child I was always incredibly small (failure to thrive) and they even thought I was autistic for the first 2 years of my life. I have PCOS and low vitamin D and I have this instinct that there is some underlying problem that is exacerbating if not creating the PCOS and low vitamin D.... Looking at symptoms and family history, celiacs or Gluten Intolerance seems to fit the bill... Im scared though that its NOT gluten intolerance because then I don't know what Ill do.. im miserable, and im going bald (im only 27 years old). And since for the past few weeks i have been making sure to eat plenty of gluten because of all this crazy annoying testing and im feeling just AWFUL.. my boss asked me if i was preggers yesterday (not overweight, 5'6' and 145lbs) because im so bloated.

Anybody else scared or was scared that it WASNT gluten intolerance? I just feel with Gluten Intolerance i will know how to manage it, it wont be easy by any means but ill KNOW what to do to make it better... ugh... i hate waiting!

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I can't say that I was scared it wasn't celiac because no one ever told me what it was. My doctors called it Sprue and said just to be happy I didn't have it. I do know how it feels to be so very sick and not have the doctors have a clue. I would go gluten free the day you have the endoscopy done no matter what the results of the blood tests. There are false negatives for both blood and endo but your body will most likely give you the answer. You have come to a great place to learn alot about the gluten free life and you can feel free to post any questions you need to. Welcome and I hope you are feeling better soon.

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I was afraid it wouldn't be celiac disease! I had been sick since Dec, including fainting due to very low BP and even seizures! I went through hell with my health and with a ridiculous amount of tests. When the blood test came back positive for celiac disease I was so relieved - yes, also shocked and had no idea what it was - ...but after I got over the initial shock I was so relieved to finally have an answer so that I could start working at getting better! After the endoscopy wasn't conclusive I've been afraid that it isn't celiac disease but the gluten-free diet has given me great relief and so I know I'm on the right track :) I find out on Aug. 25th the results of the biopsies and HLA typing.

Even if the tests aren't conclusive, go gluten-free as soon as you're done all your testing (as you know, don't go gluten-free before they're all done so you don't get false neg). Whatever the tests say, if you see relief after going on the gluten-free diet then you'll have your answer and you'll start feeling better!

I'm sorry you're going through such a hard time and hope you get some answers soon. Good luck!

Jillian

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I'm so glad you are getting tested and I hope the results are what you want. Most of all, just listen to your body when you are ready to go gluten-free. It will tell you if you are on the right, track.

My niece has PCOS and diabetes. I hope her new endocrinologist is smart enough to test her too. She doesn't really comment on my suggestions that she be tested. I just want her to be healthy again. You are both too young to be so sick.

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Thanks for your replies! The minute I wake up after the endoscopy im not touching any gluten! And i cant wait! im looking forward to feeling light and fancy free :)

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hey!

I think I am not so much scared that what I'm suffering from isn't celiac or a gluten sensitivity, but I will definitely be disappointed if it is not. I have never imagined that something could A- explain my miserable quality of life and B- have a cure that can completely change my life. As much as I will be disappointed... I feel like it's expected, because there have never been answers! So, I totally know what you're feeling, and it is no fun! Just having an answer and a direction seems like a miracle! Good luck to you!

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