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

Posts I've Made

In Topic: Celiacs With Gall Bladder Disease

05 November 2004 - 08:06 PM

To those of you having biliary (liver, pancreatic and/or bile duct problems)- please ask your doctor to order an MRCP. It is an MRI of the biliary tract that will give much more information than an ultrasound. Especially if you have very pale colored stools. My son has short gut (75% of his small intestines, his ileocecal valve and part of his colon have been removed) and had to have his galbladder removed right before he turned 5 yrs old :( .He had a HUGE stone stuck in his common bile duct -an emergency surgery was needed-and he had to hve his galbladder removed after that. He has since had intermittent pain like you have described and @ 5 months ago had his 1st MRCP. They discovered more stones stuck in his common bile duct. He had an ERCP (an endoscopic procedure) to remove them. He then 4 weeks later had more stones discovered (MRCP) and another ERCP. He then had another set of stones discovered and a stent put in his common bile duct. He will have the stent removed in @ a month and is being referred to an out of town pediatric liver specialist. He already sees an excellent liver specialist (hepatologist) and GI dr here. I have seen a hepatologist too and had a liver biopsy that showed damaged that was from an unknown cause (then undiagnosed celiac ?)

It is important to get the most informative diagnostic tests done in order to know how to treat biliary problems. It is not unfortunately just a simple diet change needed and is important to follow up on. Good luck to all of you in finding the right dr to figure out how to help.

In Topic: Noodles & Company

04 November 2004 - 04:47 PM

Thanks for posting this :D My husband and I and our 3 kids are all gluten free. We tried noodles & co twice now, it was really good and none of us had any problems :D :D I was insistant that we talk to the managers both times (2 different restaurants) and that they personally prepared our meals in a fresh pot with fresh water. We had them put plain grilled chicken, olive oil and fresh parmesan cheese on our pasta. Both managers didn't really 'get it' until I explained more about celiac and just how important the fresh pot and fresh water was.
Noodles & co's national headquarters is a few minutes from my house so I am going to go there tommorrow and explain the importance of fresh water etc.. and thank them for having gluten free foods !!! It has been really nice for us to be able to eat at another restaurant that the kids love.

In Topic: Baby/ Child Diagnosed?

21 October 2004 - 08:13 AM

My son had many biopsies/endoscopies (for other reasons- he has short gut-over 75% of his small intestines were removed as an infant) well before he was 6 yrs old. He did not have the classic flattened villi, but lymphocytes found during his biopsy that dx'd celiac disease. He has previously had false negative blood test results before the newer blood tests were readily available. If a child has + bloodwork, it really doesn't make sense to me to do a biopsy, because they still need to be gluten free.

In Topic: Question For Celiac3270

16 October 2004 - 06:38 PM

Hi Lisa
Thanks for the number :)

Hi Joanna
My son's Gi drs have their own nutritionist and we have also seen several nutritionists at our local children's hospital, but it has been a while since we have been there. My son has also seen a peds GI dr who specializes in nutrition, but I haven't been real thrilled with any of them. He has a very unique combination of GI issues-the SBS, celiac and Caroli's disease(possibly-we don't know if he has it for certain now) is extremely unusual. I have heard thet the clinic you are referring to has a GI motility clinic is that true ? My son also has some yet to be definitively diagnosed motility issues, even though he has seen a dr in Kansas City for diagnostic testing (the dr there was a JERK) Long story, but a complete waste of time :angry:

In Topic: Celiac And Pancreatic Cancer?

12 October 2004 - 08:45 AM

I am not your 'classic' looking celiac either. My kids all have celiac disease or gluten intolerance as does my husband. My kids are all have very different looking body types/weights/height and symptoms. They are triplets so I have a godd comparison group. One of my boys had his galbladder out at almost 5 yrs old. He had huge stones stuck in his common bile duct. He had a horrible case of pancreatitis after his first ERCP and has had several more cases in his continued biliary tract problems.( sugeries, dialation, stent in common bile duct...) I know that his (and my) liver problems and biliary tract problems (including chronic pancreatitis that can cause pancreatic cancer) can be caused by untreated celiac disease.
I would do a searc h by putting in biliary disorders and celiac and see what comes up. I like to look for medical journal articles at emedicine to bring to our specialists. They tend to respect the medical journal info more.
Are you seeing a GI dr recommended here ? If not and you are not comfortable with your GI dr's dismissal find a new one !!! There are good ones out there !! Good luck.

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