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Have Hope

ryeanddiet

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ryeanddiet Rookie
ryeanddiet
Posted

Just wanted to share a little story for those of you suffering but feel certain you have celiac but unable to get conclusive support.

I had issues as a child, then again in my teens and again in my 20's which eventually led to my gall bladder being removed (I finally had an acute attack, had jaundice and they discovered it was full of stones despite being underweight and having very low cholestrol count and no family history of gallstones). Last year, it started again and through many drs and naturopaths, I began to once again suspect it was celiac(ruled out when I was a teen b/c I was relatively tall).

I asked for the blood tests during my physical last year and was lactose intolerant, and almost anemic iron and b12 levels as well as having positive numbers for the celiac blood tests. The GP deduced celiac. I asked to see a GI (wanted someone to check the intestinal damage) so I was booked in an appointment 8 months out (live in Canada- we have to wait for specialists). I went gluten free for those 8months and felt great by month 5..how wonderful to go to the bathroom like a normal person and all the other annoying symptoms were gone!

When I finally went to the GI, they said I would have to have the biopsy and that it couldn't be medically deduced without despite positive blood work and gluten challenge (we don't have Enterolab in Canada so that wasn't an option). Disheartened, I went back on gluten for 3 months and suffered for it...I even got a rash this time around which I feel may be DH but no one would do a biopsy.

Yesterday I had my gastrocopy and was lucid for the entire procedure. To my heart's content the dr said 'yes, the villi do look a bit flattened' (he had been claiming it as IBS in our previous consults). It will be 10 days before the results are back but even he was suggesting I could go gluten-free right away if I wanted to which I replied 'that was my intent regardless of diagnosis, I know how I feel'.

So to make a long story short, it's good to get a diagnosis for the sake of screening relatives but if you've done the research and know how you feel and the symptoms are there..don't lose hope and don't suffer. you aren't alone. Thanks to you all for an amazing source of info and encouragement. I look forward to checking back here to read and post often.

jen :)

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