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Member Since 22 Feb 2004
Offline Last Active Nov 14 2004 06:33 PM

Topics I've Started

Rx Ingredients

17 October 2004 - 06:39 PM

My son is taking an rx- Urso for his liver/biliary tract disorder. I think the ingredients are all gluten free, the pharmacist didn't know. The manufacturer didn't seem to want to say one way or another (didn't want to be liable I guess) He hasn't been feeling great lately, but it could be from so many reasons. He has celiac disease, short bowel syndrome, a biliary stent and a liver disorder, so it is hard to tell with him !

Here are the ingredients from the company's web site
Inactive ingredients: microcrystalline cellulose, povidone, sodium starch glycolate, magnesium stearate, ethylcellulose, dibutyl sebacate, carnauba wax, hydroxypropyl methylcellulose, PEG 3350, PEG 8000, cetyl alcohol, sodium lauryl sulfate and hydrogen peroxide.

Any info would be welcome, thanks in advance


Question For Celiac3270

10 October 2004 - 06:59 PM

I saw this in another post you wrote and am wondering if you could give me some more info please :D

"When I talked to a nutritionist, Anne Lee (who works with famous celiac Dr. Green), she said that one of the key things is not to worry -- stress is not good for dealing with and recovering from celiac disease...[QUOTE]"

Do you have contact information for Dr. Green and his/her nutritionist ?
Our whole family-me, husband and each of our triplets has celiac disease or is gluten intolerant. One of my boys also has major GI challenges besides celiac disease- He has had over 70% of his small intestines, his ileocecal valve and part of his colon removed, so he has SBS (short bowel syndrome). He also has damage to his common bile duct from gal bladder surgery removal when he was 5 yrs old. He now has a biliary stent in place after 3 recent proceedure to remove stones in his bile duct. He may also have a liver disorder called Caroli's disease. So obviously not just a 'simple' case of celiac disease as far as nutrition challenges. I have been looking for a really good nutritionist to help us. More info than you needed :D but.. thanks for any info you can provide.

Reaction After Touching Foods ?

27 September 2004 - 08:23 AM

My kids (I have 8 yr old triplets all 3 have celiac disease or gluten intolerance) made a project at school that had pretzels, oreo cookies, saltines and licorice of all things :( used as building materials. My kids know better than to eat any of those things and they said they washed their hands several times afterwards. One of my boys, the one with the most severe problem has had diarrhea for the last 3 days. He also has other major GI problems too- short bowel syndrome so it can be hard to say what is the source of his problems sometimes.
Has anyone seen a similar reaction to/problem with touching foods ?
My kids are hand washing experts (better than almost everyone I know :P ) because of all the medical issues we have dealt with.

The food challenges at school have been dealt with, but this is a new one to me.

Additional Nutrition Challenges ?

11 September 2004 - 07:50 PM

Does anyone else have a child with major nutritional challenges besides celiac disease ? One of my boys has short gut-he had 75% of his small intestines, his ileocecal valve(very important) and part of his colon removed as a newborn. he also has a biliary tract disorder and possibly a progressive liver disorder too. He has a stent in his common bile duct that is there for a few months in order to try and keep it open (he has 2 areas of stenosis) and for the parts that are very dialated to compress around it. The bile flow is not very good and therefore more difficult for him to digest food. He is uncomfortable every time he eats, has major malabsorption problems with his short gut, and also has celiac disease with all the restrictions it entails.
It is very taxing to try and assure that he is getting adequate nutrition, with all the extra challenges besides 'just' celiac. he is one of my triplets and all three of them have been diagnosed with either celiac disease or gluten intolerance. My husband has gluten intolerance and I have celiac disease, so the whole family is totally gluten free. That helps to have all of us with the same restrictions.

Bile Acid Problems And Jaundice

03 July 2004 - 07:51 PM

My son has short gut (he had over 70% of his small intestines removed, his ileocecal valve removed and part of his colon removed) and he also has celiac disease. he had his galbladder out when he was almost 5 yrs old :( after he had a huge gallstone stuck in his common bile duct. He just had another ERCP to remove sludge from his common bile duct and has recently been jaundice more noticably and more often (it is intermittent). His total billiruben was elevated last time he had it tested and his bile ducts are dialated still or again ( not certain ??) . He had his bile acids tested (a specialized urinalysis that only a few places do thouroghly) but we don't have the results yet. He is having another MRCP in a few days to investigarte more.

Anyone else have any experiences that are similar ? It is hard to tell if his problems are stemming from the short gut and his many months of TPN or the damage celiac has done to him ?? The celiac disease was undiagnosed until he was 7 yrs old, becuase the earlier tests he had done showed false positive bloodwork.

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