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Member Since 21 Apr 2004
Offline Last Active Apr 21 2005 01:37 PM

Topics I've Started

Need Ped Gi Dr In Pa

03 March 2005 - 12:20 PM

Anybody know a good pediatric GI dr in Pennsylvania? We are in NE PA but can drive a few hours if we need to.

Confused About Genetic Testing

10 January 2005 - 07:29 AM

I am a bit confused about genetic testing. I have one child (almost 3 yrs old) that I suspect has Celiac; she has been gluten-free for 9 months-- she is better gluten-free but has other issues (she is not completely better-- she is having more testing done soon). In the meantime I had my other kids tested and they both had positive IgG but negative IgA. I put them all on the gluten-free diet for these 9 months. I expected my eldest child (7 yrs) to have a big growth spurt gluten-free-- because he is small for his age. But he has grown very little these past months. He never had symptoms and neither has my 4 yr old (who is of normal height and weight). I am feeling very guilty about keeping the older two gluten-free when I feel they probably do not have celiac. I am not one who thinks everybody in the world should be gluten-free. I keep wondering if genetic testing would help me figure out who to keep gluten-free. I will probably keep a gluten-free house while my 3 yr old is small but wouldn't be strict with my other kids when they went to friends houses or other places.

I read Danna Korn's book (sorry if I am misspelling her name)about Celiac kids and it sounded to me like genetic testing might be useful.. she said if you have one of the two genes there is only a 30% chance you WON'T develop Celiac... that means if you DO have one of the two genes, you have a 70% chance of having Celiac.. right? Or is not that simple? I know Enterolab tests for other genes-- is it possible to have Celiac and have one of these other genes? Somebody please explain this to me?

I am feeling somewhat desperate right now. This is all very difficult to sort out. I also have a 4 month old baby that will stay gluten free while she is a toddler (maybe longer)

Need Some Advice

07 September 2004 - 05:43 AM

Get ready for a long message..

My 2.5 yr old dd Zoe started having loose frequent bowel movements in January. My ped ran lots of tests, all negative, and finally I asked him to run the Celiac panel.. he only ran the antigliadin IgG and IgA and both came back positive. I read some on the internet and thought I would put her on a dairy free/ gluten free diet. Her bowel movements have slowed down but she is still having diarrhea.. I put her on the diet back in May. Our whole house is gluten-free and I am careful about products, cross contamination, etc. I notice that certain things seem to upset her stomach, like orange juice and chocolate in particular (like gluten-free brownie mixes with no dairy.. the chocolate seems to be going right through her). She saw a ped GI dr in July and of course he wants me to put her on a gluten challenge and do the biopsy. He ran a bunch of bloodwork.. anti-endomysial ttg was negative but he said her total iga was 30, which is borderline low (34 being the bottom range i think). I'm not sure how her antigliadin IgA was positive yet the dr is saying she is IgA deficient? he said that the igg and iga being positive doesnt mean much in a young child, just evidence that her mucus lining is damaged. i have heard this same thing from several other people. now i sort of wish i hadn't started the gluten-free diet. my other kids (i have a newborn, and then a 3 and 6 yr old) are also gluten-free right now.. my ped ran their bloodwork and the two oldest also had positive IgG but negative IgA (didn't do the total IgA) and the ped GI dr doesn't want to test them until after we are done testing my 2 yr old.. I thought at the time that I should put them on a gluten-free diet but now I don't know. Also, my 2 yr old is on the small side (she is 22 lbs at 2.5) and I really expected her to gain a lot on the gluten-free/CF diet but her weight actually stalled fo rthe first couple of months and then continued on her regular very slow weight gain (she is in the very low percentiles for her age)... also, her pre-albumin levels were slightly low as well, which indicates malnutrition.

I'm sorry, I know I am sort of rambling. I am just having a hard time deciding what to do. I keep going back and forth. The biopsy frankly scares me to death. It seems like such a traumatic thing for a young child and I'm not sure that's the best idea. I keep thinking I will do a much more strict elimination diet but I don't even know where to start. She eats a lot of meat, rice and rice products like rice cakes, potatoes, peanut butter, some fruit, very little veggies .. she has one cup of white grape juice in the morning. We have corn sometimes but not very often. She doesn't have much soy either (she has rice milk on her gluten-free cereal in the mornings). I feel like such a failure of a mom. I am doing so much but not much seems to be helping her bowels.

On the plus side, she is a very happy child.. developing normally, etc.

Any insight, advice would be welcome.


How Long To Eat Gluten Before Biopsy?

28 July 2004 - 05:28 AM

Long story, but my 29 month old had positive antigliadin IgG and IgA back in April, started gluten free/dairy free diet in MAy, have seen some improvement but not completely and she is still not gaining much weight. I think maybe we should do the biopsy recommended by my ped GI dr and he is telling me that as soon as she starts showing symptoms after going on a gluten containing diet (even if it's just a week), then to do the biopsy.. but I'm not sure if that is long enough? Does anybody know?

I am going nuts. I am also due with another baby in 4 weeks and don't know if I should start gluten now or wait until after baby is born.


When To Reintroduce Dairy?

18 May 2004 - 05:58 AM

My 2 yr old has been gluten-free and dairy free for a couple of weeks, and is finally having more "normal" poops. I know it is way too soon to reintroduce dairy into her diet... but how long should I wait? I am thinking that when I do reintroduce it, I will do it slowly, like starting with butter maybe, and then work up to cheese and see how much, if any she can tolerate. Any suggestions?



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