megsybeth

I think there are lots of health professionals who should be playing a part. I think I've had celiac for at least thirty years undiagnosed. I went to doctors over the years for many different pains and issues that might have been a flag. But I know that knowledge was really limited of the disease so I can sort of get over it.  But what really kills me is that less than two years ago I saw a fertility specialist to conceive with my second son after a year of trying. I knew from charting that I was not ovulating (I got lucky the first time I got pregnant naturally with my other son because I was barely ovulating then but thought my thermometer was broken). I think she should have tested me for celiac just based on unknown infertility (or at least asked about my overall health to see if I might warrant testing).

I'm lucky to have two wonderful boys and my second son seems very healthy. But the fact that this doctor gave me clomid and helped with a pregnancy that could so easily have ended in horrible tragedy really gets me angry.

I actually plan to write to all of the health care professionals my son (also celiac) and I have delt with over the years who would have benefited from knowing. Not an angry letter but some articles on how celiac relates to their specialty, and how it was presenting for us when we saw them. I think if we all did that, it might be a start.

Thanks everyone. This is a continuous work in progress I'm learning. But my husband has finally joined in and he was the one to think of our broom and dust bin. I don't eat off the floor but I cannot say the same for my children. I know it will take time but it feels really good to be making progress.

I think I read the 1-2% fasle negative statistic on the University of Chicago website but my general experience has not been that doctors test properly. I'd easily believe that half the doctors do the wrong tests or insufficient numbers of tests which would make this number a bit larger. My son was first flagged for celiac because of failure to thrive at 18 months and was told that he tested negative. After looking back through his records I see that he wasn't given a blood test at all for celiac (blood work was done for other things), they based it on assessing fats in the stool, which is not an accepted means. A second doctor did the same at age 2.5. This is a little more extreme, but plenty of adults are given the wrong or insufficient blood tests and told they are negative.

And then there is lab error, lack of skill in the technician. I think the reason these tests are sent out from most labs is that it takes some subjective skill at reading the tests, it's not as clear as a strep culture or something. So I suspect the 1-2% is what a researcher would find in a study of their patients tested by skilled pathologists, with results scored by skilled technicians. I'm very skeptical that this reflects most people's care.

Thanks, Ladies. I think that's a good idea, Ravenswood, to say that I think everyone should be screened for it. I do make a point of telling people that I didn't have certain symptoms prior to my diagnosis because I think people are still stuck on the idea of it being a purely GI thing. I will try to bring it up with her again after I see a specialist in San Diego. I think since we both have it it makes sense for me to ask if she's heard of this doctor and to let her know the "latest" practices such as testing my asymptomatic baby. I do think it's so funny that her son is so drawn to mine.

And, Ravenswood, just looking through your signature for the first time and I'm so sorry what you and your family have been through. It makes me really appreciate that my boys might get the treatment they need when they need it. I spend so much time grumbling about a health care system that missed my celiac for thirty years and my son's for three short years, but we are so lucky that we finally are in a moment where the care we need is out there and there are forums like this to help us out. I hope you and your sons continue healing.