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BrittLoves2Run

Are You "self Diagnosed"?

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Unfortunately you need to be eating plenty of gluten for the biopsy. I had a biopsy 2 years ago, and was gluten-lite at the time because I instinctively felt better that way, after having been in hospital with nil by mouth for a while. The biopsy was negative and I'll never know if it was due to my gluten-lite diet or if my villi were resolutely intact despite my gluten-responsive symptoms.

They won't do any more blood tests for celiac, but I am not sure that they wouldn't do more tests for other things if your tests picked up another abnormality eg thyroid problems. It depends what tests your doctor ordered. I had some secondary blood abnormalities which all went away within 2 months of being gluten free. But that is not everyone's experience.

As you are so close, I would stick it out if you can bear it. Once you are gluten free, if it helps, you won't ever want to go back, so a formal diagnosis becomes very difficult at that point.

If it all comes back negative, or you decide you don't wish to worry about a formal diagnosis, try the diet anyway.

Yes.. You are right. I am so close at this point I want to stick it out to get the most accurate testing. If the blood work does come back fine should I insist on a Upper GI anyway? I think if everything comes back negative I should see how much impact the Gluten free diet has for me.. it would just suck to to have to go back to eating gluten if it does work well, if I need to be tested at a later time.

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Do I count as self-diagnosed if I figured out that I have Celiac before my doctor and I had to request the blood test? :blink:

That's pretty much the situation i'm in. I feel like back when I was told I had IBS, that I should have been tested then. I had to INSIST my doctor to even do the Celiac testing.

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I am self diagnosed for the sole reason I was not aware of how the blood test having false negative issues and also that I needed to be on gluten for good biopsy/blood work results. My GI was not very help with this information. My general practitioner was more informative when I went to him still complaining of issues and said it was worth a shot to stay gluten free (as I already started for two weeks at that point) as people can be gluten intolerant and test negative for Celiac or just have false negative blood work. So on his advice I stayed with it. He also talked to me and asked me if I needed a diagnosis for my own sake. Now he said this very kindly and was willing send me to another GI and get proper testing done if I wanted to get a label of Celiac because that's how confident he was in the fact I have it. However, since it will only get me a label, I didn't feel the need to go back on gluten and feel terrible again. Though in the back of my mind it would be nice to know.

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I am self diagnosed. My mother figured out my gluten intolerance when I was about 10 months old. At 6 months I was starting to eat solid foods and my health went down hill. I lost weight and looked sick. This was 31 years ago and I guess the doctors weren't as aware of gluten intolerance as they are know because they had no idea. my mother said she figured it out when she was chewing on a piece of wheat and it burned her mouth so she put me on a gluten free diet. My health rebounded and the rest is history. The most testing I had done was a blood test but I was, and had been, on a gluten free diet so of course it came out negative. As a kid I would from time to time cheat on my diet and would pay for it. I Like my diet, I work construction and have plenty of energy and am plenty strong. My brother went on a gluten free diet a few years ago also and I believe my 22 month old son is also gluten intolerant and lactose intolerant. I have a five year old daughter and she seems to be fine.

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