Quote:
Originally Posted by MotherMoon
was tested for celiac last week as I have been diagnosed with vitamin B12 deficiency. One of the main causes of this deficiency in adults under retirement age is celiac. There is a history of it in my family. Well, I went mostly GF 5 months ago. I have had infractions as I am not as diligent with myself as I am the girls. I was getting wheat at least once a week. When I discovered the B12 deficiency and that the dr wanted to test me for celiac given the family history, I started eating wheat at every meal. I had already had some for three days in a row the weekend before. I ate it every day for 6 or so days. My test came back negative. My question is this -- given the family history, the obvious malabsorption issue with the B12 deficiency, and that I was never really gluten free, if I was celiac, shouldn't the test have come back positive? I know there is a high failure rate on the tests. I know I can't eat gluten - I get extremely grumpy (a huge understatement) and really constipated (again a huge understatement, I have been completely GF for 10 days and am still dealing with this).
I guess I am really just venting. I can't seem to get a definitive diagnosis for anyone in my family. The two people most likely to get a diagnosis won't get tested. Dad was diagnosed at 3 years old but that was over 50 years ago. He admits he probably does have celiac but won't do anything about it. His sister has all the classic and non classic symptoms but choses to ignore them but harrasses me about denying the girls a normal childhood.
Michelle
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This is pretty much my story too. No one in my family has been diagnosed. The two likeliest candidates for a diagnosis were my twin and I. However, we got so sick, and so little help, we went GF on our own before we could be tested. By the time we figured out this was wrong, we were way too scared to ever eat gluten again.
By the way, I don't think 6 days will give you a positive result. Dr. Fasano (natl expert) wanted to keep my nephew was gluten for 2 months.
Don't be discouraged. I am pretty confident that the medical community doesn't understand the extent to gluten intolerance and that "celiac" is only a small part of the puzzle. I took both my kids off gluten as a result. I just couldn't take the chance that they were running at 75...65...55% throughout their childhood. I want them to be able to run at 150%.
Grace