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 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.

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 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. Lorraine

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.

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

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

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.

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 in order for your milk to be ok for him if that is the case. I have triplets all three of whom have either celiac disease or gluten intolerance. All three of them needed to be on on elemental casein free Rx formula neocate for a while. Have you considered one of the bottles that closely simulate the breast with a formula he can tolerate ? The very frequent feeding and fussiness/clingy behavior sound to me very much like he is having problems tolerating your breastmilk but need the comfort. I think it is particularly cruel that our bodies crave the foods that we have problems tolerating . One of my boys has had horrible consequences from a milk based formula that was given AGAINST my express wishes. He lost most of his intestines and spent his first 6 months in the hospital. He has chronic ongoing problems and many many consequences from undiagnosed celaic until @ a year ago. He was tested many times as a baby and a toddler, but the older tests kept showing a false negative result. Please don't let people convince you that it is 'your fault' that you have a 'clingy' 'spoiled' boy . Babies and toddlers don't have a good way to let you know when they are having problems and need to be comforted. It really bugged me when everyone kept telling me I was spoiling my daughter by holding her upright and walking with her. She had SEVERE reflux and was miserable. A pH probe showed that she was having severe episodes at 3 am every night. When she woke up crying ,everyone kept telling me I was spoiling her by going in and comforting her

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 maybe ? The project they made was a Roman road. It would have been expensive (but worth it) for me to provide alternatives for them to use. We have to bring food to everything we do and it gets really expensive for some things, especially since a lot of places won't give you any kind of break for not utilizing the food provided

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 ) 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.

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 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. Lorraine

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 email if you would like. My son has several very complicated GI problems (short gut, caroli's disease familial polyposis) and also has celiac disease. Our main GI dr is Ted Stathos and we also see dr Ronald Holmes at the same practice Rocky Mountain Pediatric GI 303-869-2121. They are both wonderful drs and really nice people. There is a nutritionist on staff and they have several offices in the metro area including one near Park meadows Mall (very close to Castle Pines North-my parents just moved from there) www.rmpgi.com We are very happy with my kids' GI care (I have triplets who all see the GI drs) and I can highly recommend the drs we see. Good luck with everything. Castle Pines North is a beautiful area enjoy it .

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 wish I had been dignosed before my triplet pregnancy. It may have made all the difference in the world for my kids. One of them has had major ongoing chronic problems after he was given formula against my adament requests. I knew our family had problems with tolerating milk (nearly every OTC formula is cow's milk based). My son had a very bad reaction to the formula and lost most of his intestines, was critically ill for a long time and has a huge host of major consequences a s a result. If I had been gluten free and he had received only breastmilk like I had adamently requested then it would have been a different story. All three of my kids (and my husband and I ) have been dignosed with celaic or gluten intolerance and it would have made a world of difference if it had been diagnosed earlier. I went to MANY specialists/accupunturists/alternative medicine specialists, GI drs, allergists, hepatologists before I got pregnant. I also went to an infertility specialist for 7 yrs before I got pregnant. Everything could have been different if one of the people I went to diagnosed me !!!!!! There is no harm that can come from a gluten free diet only good !!!!!