I'm still confused about my diagnosis

October 27, 2006

I'm reading through BTVC. It makes so very much sense to me. I have

had an IBD for years. I didn't go in to have it checked out until

about 3 1/2 years ago and I was bleeding very badly (I had just

lost a child to cancer). I was diagnosed with colitis (and not

ulcerative??), basically proctitis. That's all I was told. He gave

me some meds and never said a word about diet.

I don't like taking medication, so I did respond well to the meds, but

come to find out after the fact, it was overkill and they made me feel

ill (mesalamine via enema). So, I quit taking it. Last year or so, I

was back in for a complete colonoscopy, upper & lower (and I remember

x-rays, too). I was convinced before I went in that I was a celiac

although I am not thin. I felt so much better when I'd avoid starches

and flours. I had had a test done at my doctors office checking my

glaidin? levels... someone had told me this can be an indicator of

celiacs. My levels were raised but the digestive care doctor never

explained why they were.

He told me I wasn't a celiac and it looked more like ulcerative

colitis (proctitis) and he said it even looked a bit like crohn's (he

said this sort of in passing and gave the official diagnosis as

colitis). He supposedly did a biopsy to check for the celiac's but

I'm not sure how they officially check for it and I'm even more

confused about it after reading BTVC. I asked him about diet and he

dismissed it. He gave me another prescription for canasa (mesalamine

again only as a suppository because not much of my colon is affected

but it's enough). I asked him how long I would have to take it and he

said probably for the rest of my life . He did not mention diet...

why???? I also have a parent who was diagnosed with schizophrenia way

back in the '60's. I would never have ever thought that an IBD and

that could have been connected.

I am not on the scd diet 100% but I want to be after I gather supplies

so I am sure to be successful with it. I have so many big feelings

about my new found discoveries (scd diet) that I can't even begin to

explain how much of a cloud's been lifted... I don't have to live with

the yucky symptoms of an IBD for the rest of my life... why isn't diet

stressed more??

Christa

mystery IBD for 9 years... supposedly colitis could be crohn's... who

knows???

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