Re: FYI (Connection between PSC and Gluten)

[Guest guest]

hi Tim

Celiac was thoroughly investigated for our whole family (suspicious

endoscopy/biopsy findings-initially for my son w/PSC) and we even went on a

completely gluten free diet for over a year while investigations took place-

biopsies re-peat biopsies, labs and HLA testing. None of us have celiac like

suspected. My new GI strongly suspected celiac for me again after a few years

w/my latest biopsy, but instead have been diagnosed with another protein

malabsorption condition. Even for those who don't end up having celiac a gluten

free diet can be beneficial in helping digestion because the proteins in gluten

are very 'large'- similar to casein (milk) proteins. Since celiac is an

autoimmune disease like PSC it makes sense that there is a larger segment of PSC

patients who also have celiac.

I'm glad that you are feeling better and have been helped with the celiac

diagnosis.

Lori

lucky mom blessed with triplets

>

> My friend, Mike has celiac sprue disease. He has done a great deal of

> research about it.  He also knows about my psc.  He contacted me a

> year ago, saying he thought there was a connection between gluten and my

> liver disease.  He bugged me every couple of months to get tested for

> sensitivity to tissue transglutaminase (Fecal anti-tissue

> transglutaminase IgA antibody, which the immune system considers tissue

> transglutaminase a foreign substance causing an autoimmune reaction.

>  Finally in December I got tested thru Enterolab in Dallas TX.  To

> my surprise I tested positive.  I have alway felt there was a

> connection to psc and diet.  The pain I get in my back would come and

> go, as to suggest something I was eating was irritating my liver.  I

> had thought it was acidic foods, but I would still get the pains without

> eating those types of foods.  My friend,Mike, helped me get going on

> a gluten free diet, and what a difference it has made.  More energy,

> no back pains, and no rundown feelings!  Gluten is in almost

> everything!  It is even in fabric softener, which I was absorbing

> thru my skin.  Hope this information may help.       - Tim

>

[Guest guest]

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 ....