Re: FYI (Connection between PSC and Gluten)

April 9, 2009

Hi Tim

It's been over 4 years since I started following a gluten free diet not so much

for my PSC initially but for my UC. I think the last thing that tipped the

scales in the direction of going GF was having an adverse reaction to someone's

Christmas baking back in late 2004. I'd only dabbled in eliminating my wheat

intake for about a month so didn't really think it would do much harm having

just a " few " treats.

Would I say that I " feel " overwhelmingly better? Admittedly, not really. It's

not like I have an abundance of energy but at the same time, I'm still very

capable of a variety of activities including long distance cycling so I guess

it's all relative. [i'm also 5 years older so that can have a bearing as much as

I'd not like to admit it ... ] But from what I recall having sampled those

treats back then, I ended up wanting to claw my skin off my body. So was that

PSC related? Possibly. And the symptoms stopped when I eliminated the baked

goods.

But I think the best reason for maintaining the GF diet was the results from my

colonoscopy this past December as compared to the first one I had when the UC

was discovered in 2002. After the first one, the doc described my colon as

" hamburger. " [Now there's a visual.] Following my most recent one, the

hepatologist said if she saw my colon and didn't know I had UC, she'd be hard

pressed to consider I had it. [No more hamburger! ]

So for whatever it's worth, even if the GF diet is only partly responsible, it

seems to have helped. And even though I tested negative for anything related to

celiac disease, I'll continue eating this way because overall I feel it's had

some beneficial effects. In the meantime, I've been told that since I'd already

eliminated wheat/gluten from my diet at the time of testing, I could've had a

false negative reading. But the only option would be to resume eating

gluten-containing foods and risk those earlier symptoms and then get re-tested.

Hmmm--now doesn't that just sound exciting ....

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