To be diagnosed or not to be diagnosed? That is the question.

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Hi Missingtortillas,
I am a big believer in self diagnosis. Not that docs can't do a fine job (I work with many docs, and unfortunately they only know the basics, or not even that). Here is my story, I will try to keep it short.

I have suffered from abdominal pain for years (we have removed my gallbladder, done endoscopes into my stomach, put me on meds for ulcers you name it). I went on a low carb diet (not atkins) to loose weight. My stomach pain nearly vanished and the rash my doc said was eczema (that seems to be what they call any rash they can't explain) was gone. I felt so good that at Thanksgiving (it will be four years this Turkey day) I had a small helping of stuffing, half a dinner roll and a tiny piece of pie. I was so sick, and suddenly a rash broke out all over my neck. It hurt and it itched, I was miserable.
I went to work after the holiday and a co-worker asked if I had "ring worm" at the same time one of the docs I work with passed. He stopped, looked me over briefly and said, "No, she has celiac sprue." So my regular family doc did a blood test on me and sure enough huge positive and a major change for me.

Here is where self diagnosis comes in. I tried to have a separate house hold. I labeled my stuff and had gluten-free items for me while the rest of my family ate normally. OOH I was always so ill and rashy, the kids would contaminate my stuff. My husband, bless that man, decided he loved me more than bread (it was huge, major, for him to give up his bread) and the entire house went gluten-free. I had had both my daughters (they had minor stomach pain) tested (blood test on my youngest daughter then 7, and both blood and endoscopic biopsy on my then 12 yr old daughter) both came back negative. However, when we made the entire household gluten-free, my youngest; who was failing her classes, couldn't concentrate but wasn't ADD or AD/HD, suddenly went from needing remedial special ed courses to way above average. She became a completely different kid. I whole heartedly believe that she also has celiacs disease, despite what the docs say. You can tell when she has something that contains gluten, she is flakey and can't remember things. She breaks out in a rash around her nose of all places.

So to make this long story short as I can, if you believe you have celiac disease go with it. You will not be harmed by keeping gluten from your diet, there a plenty of other grains to get you nutritional needs from. You don't need a doctor to tell you that you have the problem, and if they come up with a false negative you will do more harm to yourself than is necessary.

Good Luck!

Keri

Thanks Keri! It's mom's like you that help make me feel I'm doing the right thing. Sometimes people who don't relate think I'm being extream. I'm almost a year at being gluten free and still accidently gluten myself here and there. It's going to take some time but I will never ever go back!