PBC Foundation
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celiac disease

Just found out about 3 weeks ago that I have celiac disease,I asked my DR to perform the test needed at first he was questioning me and now he's just scratching his head and wanted to know why I should be tested for this.So at the end of the month I will have all my blood work done agian remember this is the DR that told me I have stage 4 PBC but I have no symptoms just taking urso 500mg3x day,and my alk phos were at 205 anyone ever checked into this.

3 Replies

I was tested as my iron was so low but not confirmed.



I just saw my Gastro yesterday and I mentioned going to Mayo (We are in NE Missouri). He said that the top Gastroenterologist "Gurru" for AutoImmune Liver (his words. lol) in the WORLD is at Mayo in Rochester. I think we both need to go there. Neither of our Drs. seem to know what they are talking about. -:(

After I saw your post on Celiac, I googled it to see what it was. Checked all the symptoms - I have about half of them - the main one being the diarrhea. Been over 6 months now and getting worse. Mentioned the possibility to my Dr. and he said "No, I don't think so", but he did include the lab work for it so should know next week.

I have pretty much quit eating bread/baked goods. Did make the mistake of eating a "med. fry" at McD's. -:(( and then going to WalMart. (Not good) 30minutes and as you probably know, in the mega stores the restrooms are front and back - no sides, no middles - and of course ya have to be in the middle/side of the store when it hits. Ya can't walk fast enough!! LOL

Dr. wanted to me to take this new prescription - Lotronex- NOT. My co-pay would be $400 per month!! I don't think so. And the "Anti-spasmadic" Dicyclomine that he put me on 6 mos. ago didn't work at all so he wants me to take Metamucil. (?)

Anyhow - - lol - - I have about had enough of this. Oh yes, he also said that since I had the Gall Bladder removed in June that that is probably the reason I'm having increased problems. (??) I called his office before I had surgery to get his opinion re: the surgery but he never returned the call.

I have mentioned to my husband that I would like to be able to save the $$ to go to Mayo next month. It would probably be a 3-4 day trip - just 1/2 day to get there. -:) but I truly think that it would be worth it. "Need some answers!!".



well I have been GLUTEN-FREE for the past 3 weeks and I feel 1million times better,and so far I was able to stop taking meds for my ulcers because I no longer have those symptoms. It was hard at first to go GLUTEN-FREE but it is worth it,at the end of the month I will be taking all my bloods agian and will let you know how I'm doing. your right with our DR's I feel like I know more then he does.praying for you I know it's not easy but what I have been thru the last 2years looking for real answers not well here take this med and see me in 6 months isn't an answer and I hope I can help people with PBC.look to read this book( CELIAC DISEASE a hidden epidemic), by PETER H.R.GREEN,MD he is the director of the celiac disease center at columbia university. keep your chin up and breath it will get better.



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