I'm Confused, Have Questions

[mom-to-claire]

I'll try to make this short but I might not be able to.

BACKGROUND - My 10 month old daughter appears to have a gluten intolerance. She has had the blood tests but no results yet and I know they aren't conclusive. She has been a fussy/clingy/unhappy baby since birth. Started her on rice cereal at 5.5 months. Within 4 feedings (4 days) she was vomiting until there was only bile. Took her off all food for a few weeks as she also got a cold. Next rice cereal feeding, same thing.

Gave her only fruits and veggies for awhile..did OK. A few weeks later, gave her oatmeal cereal with some fruit..ate a tiny bit but hated it. Gave up for awhile and then Aug 20 (it was her baptism, that is why I remember) gave her oatmeal again and her did the same vomiting thing. Stopped giving her cereal all together. A few weeks later, decided to try toast..she ate it no problem..gave her some cheerios..ate it no problem. Within 3-4 weeks, she was off all food. Hated eating all but yogurt. Tried a waffle..vomiting again! Took her off all gluten for 2 weeks and she was a different baby. Happy etc. Was convinced it was gluten (and still am mostly)..accidently gave her kamut which I didn't know had gluten and vomiting again. A side note..gave her egg yolk (she'd had it a couple other times) and she vomited the same way.

So here are my many questions/comments

1. When she stopped getting gluten she was much happier but was still getting breast milk so it doesn't really explain the first 5 months of her life being so fussy. I know there is a big debate about gluten in breastmilk.

2. Rice cereal isn't supposed to have gluten but this was the first sign something was wrong

3. why did rice and oatmeal cereal cause such severe vomiting but toast and cheerios didn't?

4. She was tested for a wheat allergy along with oats, barley, rye (and maybe something else, I can't remember) with skin prick test. She tested negative for all. Is there a skin test for gluten to see if she is simply "allergic" or with all the grains she was tested for, it would have shown an allergy if that was the case.

5. If she had a positive or borderline test with the blood test, would she have ingested enough gluten in her short life to show damage to her intestines if we choose to have a biopsy?

6. Does anyone know if a gluten intolerance (not Celiac) can be outgrown?

7. Once you are gluten free for awhile and then get "glutened" does it take your body longer to recover? she used to be back to "normal" within a few hours..this last time it was almost a week!

I'm sure I have more questions but can't think of them right now. I'm still overwhelmed with all of this. She is still considered failure to thrive and hasn't gained much weight even being gluten free. She is 10 months old and is 14lbs 1 oz and was 7lb 8oz at birth.

[chrissy]

allergy testing can be pretty unreliable in children that young-----so can celiac testing. have you considered that she might have acid reflux?

[mom-to-claire]

allergy testing can be pretty unreliable in children that young-----so can celiac testing. have you considered that she might have acid reflux?

Sort of but she eats non gluten food very well and has no reaction. She's been eating ground chicken/beef, gluten free pasta and bread, veggies, bananas..no problems

[Ursa Major]

Your baby could be intolerant to all grains, not just gluten containing ones. That would explain the problem with oats and rice, too.

Maybe her digestive system is simply not ready for grains! Why not just feed her vegetables, fruit, some meat and breast milk until she is at least a year old. In fact, nobody needs any grains at all to be healthy. Given her severe reaction, I would wait a lot longer before even considering trying any grains again.

The only reason to be concerned about celiac disease at this point would be, if you are determined that she absolutely has to eat gluteny grains. In which case, if she has celiac disease, she would get very sick, and then you could test her to confirm that she is sick.

Or keep her off all grains and have a happy baby. And that means for you to be off grains as well, because otherwise your breast milk will make her fail to thrive, even if she doesn't have obvious symptoms (and that is likely also the problem with her being fussy for the first five months). Formula may not be a good alternative either, and neither would be cow's milk. There is a good likelihood that she wouldn't be able to tolerate either.

Believe me, whatever you eat, she gets. My oldest daughter had to stop eating nightshades because her twins were very intolerant to them. Whenever my daughter would eat potatoes, tomatoes or peppers, those babies would get the most horrible rashes, to the point of being raw and bleeding with the next bowel movements. As well as having eczema all over. Once she had those kids tested for intolerances (not allergies) and stopped eating nightshades, the kid's skin cleared up.

If your daughter is really gluten intolerant (and it sure looks like she is), then no, she won't outgrow it. It's genetic, and outgrowing it would require for her genes to change, which obviously won't happen.

By the way, celiac disease testing is VERY unreliable in babies and young children under six. Negative tests at this age really don't mean much. Positive response to the diet is the only reliable test in babies and toddlers.

[tarnalberry]

BTW, there's no debate over gluten in breastmilk. If you take a look at the studies (I use pubmed), you'll find that it's pretty definitive that gluten is passed through human breastmilk.