Need Some Advice

[mat4mel]

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.

Mel

[lovegrov]

I don't have any great advice but I can tell you that if you do have the endoscopy, your child won't remember a darn thing. Perhaps she'll be a little scared when they first start but no more so than when she gets a shot or something similar. The only real trauma is to you because you'll worry about it.

richard

[celiac3270]

It's good that she's happy and developing normally. You're not a bad parent at all. First off, for you to find out about celiac disease and ask the doctor to run bloodwork for it was great of you to find. Second, you tried the gluten-free diet instead of saying "oh, it'll just be a pain to try". Third, if your child had bloodwork after going on the gluten-free diet, you should get everyone on gluten again so that if they are celiac, it will show up in the bloodwork.

I would recommend the biopsy. It's not that big a deal; I had one in February (I had just turned 13, which isn't the same as 2, but I'm still a kid)......I got put out completely, so, obviously, I didn't recall a thing.......I woke up, was fine, no sore throat (the only "pain" or should I say "annoyance" one might experience after the biopsy)...I was slightly sleepy, but I was fine. People who have been drugged so they're out of it, but still conscious enough to help the doctor (for example, roll on their side) say that they can't remember anything -- so the only thing your daughter would remember would be being apprehensive before and coming out of her.....sort of daze afterwards.....I would recommend it, cause if you're going to change her diet for the rest of her life, you should be certain that that's a step you need to take so years later you're not doubting whether she really is celiac or not.

-celiac3270

[tarnalberry]

You said she's using rice milk... Is it Rice Dream? That stuff isn't gluten free.

I've found the gluten challenge to be useful - and not require eating gluten for nearly as long as the biopsy - but it's a tough decision no matter which route you take.

[mat4mel]

Like I said, I am very careful about products.. I know Rice Dream has gluten. We use Pacific rice milk. It says gluten free on the label.

Tarnel I am not sure what you mean-- you said the gluten challenge was useful-- what do you mean, doesn't require to be eating gluten for as long as the biopsy? Are you talking about enterolab?

celiac3270 I think you made a good point. If I don't do the gluten challenge and biopsy I might be doubting her being celiac for the rest of her life. And especially my other kids..

Mel

[tarnalberry]

no, for a gluten challenge, you go by body symptoms. so you are gluten-free for somewhere between a week and a month, then eat a bunch of gluten (not in other products though - so like pasta or bulgar, not bread) one day and see how your body responds. you only have to eat gluten for a day or two, since you're not doing any blood work or biopsies.

[mat4mel]

Just out of curiosity-- why pasta and bulgar and not bread- because they have less gluten? I am curious how I should do the gluten challenge if I do-- build up slowly or just start giving them one sandwich a day?

[celiac3270]

Definitely not about amount of gluten...bulgar is like pure wheat............it's better to have that than bread, cause if you eat bread, you could be having a reaction from something else in it (yeast, dairy, something......)

[tarnalberry]

exactly what celiac3270 said - bread has more than just wheat in it, and you could be reacting to something other than wheat in the bread. bulgar and pasta (I'm thinking regular pasta, NOT egg noodles) are _just_ wheat and water.

as for how to add it in, the whole point is to make the reaction as obvious as possible, so you go _totally_ cold turkey for a number of days (at least a week here), and then add a lot back in all at once. yes, if you're sensitive, it's going to make you very sick - but that's the point of the challenge, to find out if it makes you sick. if you just have a little, and have a small reaction, you might just think you've got a stress headache or something like that. if they'd take it, I'd do two sandwhiches for lunch for the challenge! ;-) maybe just sandwhiches for breakfast, lunch, and dinner. :-)

[mat4mel]

That's a good point. I thought already that I would make sure the bread had no dairy. But I didn't think about yeast. She tolerates eggs just fine. Pasta would be easy because they like rice pasta and the brand we buy seems so close to regular wheat pasta. But they don't eat much at a sitting whereas I know they would gobble up a whole sandwich. As for your suggestion Tarnalberry, I am thinking about the biopsy because I want to be sure there is nothing else going on down there.. especially since she hasn't improved completely on the gluten-free diet.

Mel

[tarnalberry]

I didn't mean to sound like I was pushing avoiding a biopsy in favor of a dietary challenge. While I think dietary challenges should be used (by the medical community) more often, I can completely understand that you would want to have a better idea of the quantification of damage that has occured and the medical "stamp of approved diagnosis" for dealing with schools and the like. I hope it goes well - I've heard most people say that the biopsies were a piece of (gluten-free) cake.

[celiac3270]

I am thinking about the biopsy because I want to be sure there is nothing else going on down there.. especially since she hasn't improved completely on the gluten-free diet.

Good idea....I am having my biopsy on the 13th just to check what's going on down there....I've already has a formal medical diagnosis through both bloodwork and biopsy, but because of my persistent symptoms after nearing seven months on the diet, they want to check everything out......