I Finally Have A Diagnosis

It's been interesting reading the other stories in this group - everyone has had a different experience.  I guess that's why celiac disease seems to escape detection so often...

I personally did not have any digestive problems, at least no pain, in my grocery list of symptoms.  I started getting headaches at age 7 though, as well as always catching some illness or other.  But 26 years ago during my second pregnancy I started to have some serious problems.  I was so tired that it was all I could do to crawl out of bed to go to the bathroom.  I also lost a lot of weight because of the nausea, but thought it must just be bad morning sickness.  My doctor kept saying "You look great!" when I went to see him and didn't investigate at all.

Four long years later I was kind of back to my pre-pregnancy condition, after having quit my job to become a stay-at-home mom.  I was told I was having trouble dealing with 'stress'.  My main concern continued to be bad headaches, which they now told me were migraines.  As well I had asthma, insomnia, depression, and a whole bunch of other weird problems.  I always felt like I had the flu.  The list of medications I was started on during my pregnancy continued to grow.  

Somehow I managed to carry on a fairly good imitation of a normal life for the next twelve years though.  But then came ten years of a slow decline; I just never felt well, and was going down hill.  I had quite a number of different doctors but the only thing they ever checked was my thyroid, which was always normal.  They continued to treat all my symptoms individually, and I was a pharmacist's dream come true - I was on so many medications.  

Then my doctor retired just when I couldn't drag myself through one more day.  It was hard finding another doctor, but when I finally did, he tested me for lots more than just low thyroid.  He discovered some high parathyroid activity, so sent me to an endocrinologist assuming that I had hyperparathyroidism.  The endocrinologist retested me, felt that that wasn't the real problem and sent me for the celiac blood test.  It came back sky high.  Finally there was some hope!  And after a long wait (that's Canada for you) I had a biopsy that confirmed the initial diagnosis.  Hurray!  I can get better at last!

It's been two weeks gluten free and I'm starting to notice a few improvements.  For instance the nasal congestion I've been plagued with for years is clearing up.  Who knew gluten was causing that?!  I guess it'll be awhile before I completely recover.  After so many years of bad symptoms, who knows how long that'll take.  But I'm looking forward to feeling better - at last!

Rucko Rucko
51-55, F
2 Responses Feb 16, 2010

That's great that you finally got diagnosed. Word on the street is that it takes on average 11 years to diagnose, but sounds longer for you :( It's great going gluten free though, just everything starts clearing up! Is it cheaper to eat gf in Canada? That's what I hate about it here in the states. It's so expensive.

I have been on a very similar road, albeit with some different symptoms. Still have to have the "official" testing, however, I have already begun to get the gluten out of my diet...what an amazing difference, even after a short time! It's exhausting trying to convince the dr's that I am NOT a hypocondriac, but now I feel there is some hope! <br />
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Best of luck to you!! :D