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Getting Tested For Celiacs


apac

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apac Newbie

After 3 years of being sick, many tests, a misdiagnosis of IBS, and a great deal of research I chose to take myself off of gluten. I now have been gluten free for almost 8 months and feel a great deal better. I was tested for Celiacs in March which was negative. I was informed at the time that it could have been a false negative due to the fact that I had been gluten free for 3 months when it was done. I still have issues off and on but lately they seem to be more often than not and my body is making it harder for me to deal with it all. Each time I get sick it is exactly the same. I don't know anything about other food allergies because all of my focus has been on gluten. Do others represent themselves in the same as as gluten...i.e. diarrhea, nausea, vomitting, bloating? I talked to my GI doctor and he suggested I eat gluten for a month. He then will do an upper scope to get the biopsy along with a blood test. I am debating this for the obvious reason - who wants to make themselves sick for just to see if it is celiacs; but also because I lost a bit of faith in him when he swore up and down that I was a "poster child for IBS".

Would I benefit at all from testing positive for celiacs - or do I just try to figure out why exactly I am not on my "A game" every day?

Signed....so overwhelemed!


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Coinkey Apprentice

In my own recent experience, it was not worth eating gluten again to get tested- purely because it was negative and the pain was awful. You could try a proper elimination diet to try and find another culprit- many others on here are sensitive to milk and soy as well as gluten. Your off and on issues could also be due to cross contamination. For me having that positive test would have simply given me reassurance that it's not all in my head and also because the Canadian government helps with the cost of gluten free food through medical expenses used against the taxes (they won't do it if you do not have Celiac diagnosed through biopsy). So, think about why you want your positive tests and weigh them up against your reasons to stay gluten free. I only went through the blood test, and for me, it's not worth it to go back on gluten just to be properly diagnosed, I'd rather remain my sane happy friendly and enthusiastic self.

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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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