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Celiac Disease experience?
law&order
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in Food Allergy
Does anyone have experience with celiac disease and toddlers? My son has been followed by GI and nutrition for over a year for poor weight gain. One of his lab results was very low and therefore the GI said it's "inconclusive" for celiac disease.
She'll likely be recommending an endoscopy at his next appointment in 2 weeks.
Anyone been down this road or have experience with GF diets and very picky toddlers?
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Re: Celiac Disease experience?
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I have Celiac Disease, as do both of my kids (6 and 4). Luckily for the kids, they've always lived gluten free, except for rare [disastrous] food trials. They know they eat a different diet than their friends at daycare and school, but it's their normal. They get gluten free versions of the treats their friends get like cupcakes, cookies, etc. It's not nearly the adjustment for them as it was for me to switch at age 30! Kids are so adaptable!
It's really pretty unusual to get a firm diagnosis at such a young age. This is because it can take quite a while for the antibodies to build up to "positive" levels, and the same for the damage they're looking for via endoscopy. It can take years and years to get "enough" villous atrophy. Plus, consider that the surface area of the small intestine is equal to that of a tennis court. Celiac damage is spotty - one area can look perfect and another can show damage. They're going in there with an endoscope and taking microscopic samples from this gigantic surface area... you do the math.
Once the testing is complete, even if they tell you it's "negative" for Celiac, I would do a gluten free trial. There is a ridiculous amount of false negatives for this disease! Take the time now to start reading up on living gluten free. Learn all the ingredient-label terms for hidden gluten, learn about cross contamination, non-obvious exposures like Play-Doh, lotions/soaps/shampoos, medications, etc. You've got nothing to lose, and potentially better health for your son to gain!
Thanks so much for this advice! We're really starting at zero and I have no experience with celiac/GF anything!
My son's major symptoms are very poor weight gain and prior anemia (waiting on current labs right now), and very low IgA. He also had reducing substances in his stool. His GI recommended the endoscopy around 15 months but we took a "wait and see" approach as he seemed to be gaining well at the time. From December-April he did great and was moving up in percentiles. Unfortunately he's back down again and I know GI will say it's time to scope
The good news is that despite the poor weight gain, he's developmentally on-track. I just feel awful that I can't seem to get him to gain any weight!
I'll be sure to discuss all of this at his appointment on the 5th, especially about whether the endoscopy will even give us the answers we're looking for.
Thanks again. I know this isn't the end of the world, but I just want him to be healthy!
I have to eat a GF diet. It's difficult at first, but once you get into the groove, it's not hard. Here are a few staple items thati always have on my grocery list.
Udis bread products- expensive, but the best GF by far
OreIda French fries
cheese/eggs/milk
chex cereal
GF spaghetti
Betty Crocker Bisquick GF mix
my doctor tells me to try to stick to meat, vegetables, potatoes, and fruit. Breakfast is always easiest for me. I cook almost everyday now, so I do eat healthier. I try to stay away from the GF packaged food, but they do come in handy sometimes. GL Momma!