Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Meredith, I know of many of our kids with CHARGE seem to be sensitive to wheat, but I had not heard of any who were officially diagnosed with celiac disease, and had the biopsy done. Are you noticing behavioral, interactive, or communication changes since Hayden went on a gluten free diet? Kim L Re: I have a question Caroline, Have you investigated the possiblility of a food allergy prior to this. Hayden is quite light approx 28lbs at 3.5yrs but I just recently realized that he has a food allergy, celiac disease to be specific. His bm's were always really loose or diareaha like, but after a month of having him on a gluten-free diet his bm have really started to solidify and he seems to be putting on some weight and dare I say it... inches?!. I know that food intollerances can be associated with CHARGE, maybe talk to your about this before doing the GI tube. Celiac needs to be tested with an intestinal biopsy - there is a blood test but it is not accurate. Hope this helps! Sincerely, Meredith Fowle mother to Hayden, 3 years > Hi everyone Iam the mother of Sara age 5 from charleston south carolina ...I > have a question about GI tubes the doctors said yesterday they want to put a > GI tube in cause sara wont eat and she is gettin sick . They told me if she > dont gain 3lbs by Monday she was getttin tube ....sara weighs 30lbs I dont know > what to do I have tried everything to get her to eat she does eat a little but > not enough she is also very picky at what she eats we give her pediasure .. > .... we are tryin to find out information about GI tubes can anyone direct us in > the right direction thanks > carolyn south carolina > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Hi Kim, I haven't really noticed anything behaviourally yet except that his appetite seems to be better, but he has only been on the gluten-free diet since Canadian thanksgiving. As someone with celiac myself I felt quite stupid that we had missed it for this long. I will step out on a limb here and say that any of the CHARGE kids with wheat sensitivities should probably be put on a gluten-free diet for the following reasons. Celiac disease is still very underdiagnosed in North America but ignoring it can have profound impacts on health later on including osteoporosis and colin cancer. If this is very common with CHARGE it might also be a reason why, even if they have no other feeding issues they are smaller. Celiac acts by stripping the intenstine of the hairs or cilla which absorb your nutrients. An undiagnosed gluten intolerance might mean that our children aren't getting the maximum nutrients out of their diet. Another thing to consider: a gluten-free diet is a diet for life. This is not something you will grow out of. On a very positive note, it is much easier to get gluten-free products in the grocery store these days. Our local Zehrs carries bread, pasta, hot cereals, cookies and even cereal bars. I do have a girl-friend whose son recently was also diagnosed with celiac (he doesn't have CHARGE) and she said that since he went on the gluten-free diet he has been much happier and less whiney. Now he has an age appropriate language and was able to tell her when he was having stomach aches. Most of our kids can't. So I would say that there definitely could be a behavioural apsect here. Hayden's upper soft spot didn't close until he was three and he was diagnosed with an iron deficiency earlier this year. Now I know why.... he was being malnourished. I hope this helps. Meredith > > Hi everyone Iam the mother of Sara age 5 from charleston south > carolina ...I > > have a question about GI tubes the doctors said yesterday they > want to put a > > GI tube in cause sara wont eat and she is gettin sick . They told > me if she > > dont gain 3lbs by Monday she was getttin tube ....sara weighs > 30lbs I dont know > > what to do I have tried everything to get her to eat she does eat > a little but > > not enough she is also very picky at what she eats we give her > pediasure .. > > .... we are tryin to find out information about GI tubes can > anyone direct us in > > the right direction thanks > > carolyn south carolina > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Meredith, WOW, another CHARGER with Celiac! I thought my son was the only one! Jeff is 20 yrs. old and was only diagnosed 4 years ago. He has done wonderfully since eliminating all sources of gluten. Smiles from, Baker - Mom to Jeff (20 yrs. CHARGEr), Steve (21 yrs. attending BYU), and others married with children of their own. Idaho, USA Re: I have a question > > > Caroline, > > Have you investigated the possiblility of a food allergy prior to > this. Hayden is quite light approx 28lbs at 3.5yrs but I just > recently realized that he has a food allergy, celiac disease to be > specific. His bm's were always really loose or diareaha like, but > after a month of having him on a gluten-free diet his bm have really > started to solidify and he seems to be putting on some weight and > dare I say it... inches?!. I know that food intollerances can be > associated with CHARGE, maybe talk to your about this before doing > the GI tube. Celiac needs to be tested with an intestinal biopsy - > there is a blood test but it is not accurate. Hope this helps! > > Sincerely, > Meredith Fowle > mother to Hayden, 3 years > > > >> Hi everyone Iam the mother of Sara age 5 from charleston south > carolina ...I >> have a question about GI tubes the doctors said yesterday they > want to put a >> GI tube in cause sara wont eat and she is gettin sick . They told > me if she >> dont gain 3lbs by Monday she was getttin tube ....sara weighs > 30lbs I dont know >> what to do I have tried everything to get her to eat she does eat > a little but >> not enough she is also very picky at what she eats we give her > pediasure .. >> .... we are tryin to find out information about GI tubes can > anyone direct us in >> the right direction thanks >> carolyn south carolina >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 Once again, this list has provided me with answers to my questions before I had a chance to ask. Eddie, 5, does not have any of the " typical " symptoms of celiac disease Kim described, but something has been going on to make him miserable. Oddly, he's OK for about 10 days then we've got 3-4 days of misery. When he started these cycles around September, antibiotics seemed to do the trick (he had several ear infections, but his reactions were over the top: frantic, squirming, pulling at himself to get his arms out of his sleeves and then back in) but at this point, I don't believe the antibiotic's 'help' was anything more than a coincidence. We're checking him out medically & his diet seems to be the logical next step. A previous blood test showed the 'nonspecific' (according to the GI) antibody for celiac elevated. She ordered more blood work next week but then, regardless of the results, we will eliminate gluten from Eddie's diet. (He's already off dairy.) Thanks for the help & I'd love any advice/recipes. Eddie eats orally and can handle small pieces that don't require too much chewing. Joanne Quote Link to comment Share on other sites More sharing options...
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