wildones

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...

Thanks for posting this 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 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...

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...

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...

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...

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...

Did you know that your diet has to TOTALLY gluten free for 3 months, for you not to be passing on gluten to your baby ? I think it is likely that he may be having problems tolerating milk proteins too (the proteins are very similar and often babies/toddlers/adults can't tolerate either protein) So you would also need to be casein free, for 3 months, also...

thank you !!!

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

Thanks for your replies. My son who has had diarrhea does not have DH. I will next time make it known to the teachers that they can't even touch things with gluten in then, if I had known they were doing this, I would have had them use the gloves like suggested. I suppose it is possible that he didn't get his hands clean enough to get rid of all of the gluten...

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...

No I am not familiar with that, but will look into it, thanks . My son does love all the foods you mentioned, so that is good news for us. Lorraine

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...

Dr Hoffenberg is good, we have seen quite a few peds GI drs in the metro Denver area including him (we saw him for familial polyposis).My only hesitation about the GI clinic at the Children's Hospital, is another dr at the clinic, who you may encounter (on call sometime or for another reason) is AWFUL ! I won't say who it is, but I will send you a private...

Find another doctor. There is no point wasting time with a doctor who will give you a hard time, especially if you are pregnant. You can still get more than adequate nutrition. You could potentially have a much bigger problem if you are consuming gluten when you shouldn't be. If you are malnourished you can not provide adequate nutrition to your baby. I really...