Sunday, September 1, 2013

Back to blogging update

Yes, this is the first post in about a year and a half. And consequently my baby boy will turn 18 months in just a couple of weeks. Looks like 3 kids is over the limit for keeping up with a food blog. But this 3rd kid was recently diagnosed (by myself) with Celiac Disease. So we're doing gluten-free hard core now. And he has a story all his own.

When Ryan went in for his 4 month check up he had dropped from 35th percentile down to around 5th percentile. Kind of a big drop. So we decided to start solids and come in for a check up in a month. He gained 3 ounces that month. I was breastfeeding and had not started him on gluten solids yet, so I decided to try going gluten-free to see if that helped. We came back in a week later and he had gained 6 ounces. The pediatrician and I were convinced. She sent me to a pediatric GI the following week. That week he lost 3 ounces, so the GI said she didn't think it was Celiac and we started supplementing with formula and extra calorie powder. Soon thereafter Ryan decided he was done breastfeeding and would only drink formula. He began to gain weight (though he had fallen below the curves on the growth chart and has not yet gotten back on) and I forgot about the idea of him having Celiac disease. 

I now realize that him giving up breastfeeding, he probably stopped having gluten through my breastmilk and started gaining weight because of that. And I can only assume that I was super good that first week, but the second week I somehow had some gluten sneak into my diet and it took it's toll on his little, sensitive body. 

Fast forward a few months, and Ryan would occasionally get diarrhea, like any kid does. But unlike any kid, it lasted for weeks every time. Most of the time it would be going on 2 or 3 weeks and I would decide to be super strict on his diet, cutting out all gluten and dairy. Basically he ate bananas, applesauce, rice, meat, and yogurt. Then the diarrhea would stop and we'd get him back to a normal diet. A month or two later he'd come down with diarrhea and the cycle would start again. After so many times of this happening, at his 15 month appointment he had dropped even further away from the bottom curve on the growth chart, and had diarrhea again. We went on vacation two days later, and that morning before I left I decided we had to cut everything out of his diet again. His diarrhea cleared up slowly, but never really returned to normal the whole time we were on vacation, so I determined that when we got back I would order a test through I had looked into their testing before, but they told me their tests work well on kids older than 1 who have not been breastfeeding for more than 6 months to make sure any antibodies are not leftovers from mom. We ordered a test for gluten and casein sensitivity and both came back as abnormal readings, meaning yes, Ryan has an immunological reaction to both gluten and casein. So I diagnosed him with Celiac Disease. I haven't taken him in to the doctor yet because I figure I know more about the disease than my pediatrician. But he has his 18 month check up in a couple of weeks, and I already have a pediatric GI visit scheduled for after that, because I know our pediatrician will send me on to that. I would like to have 3 months of gluten-free weight gain to show before we take him in. Which some times I feel like "Yeah! He's gaining weight!" and other days I think he is stuck on a plateau, or sometimes even loses weight.

At his 15 month check up Ryan weighed 19 lbs. 6 oz., which was 13 ounces he had gained in the previous 3 months. A month later on our not-incredibly-accurate bathroom scale he was weighing in consistently at 20.5 pounds. 1 pound in one month was more than he gained in all THREE months prior. But then the following week he was down to 20.0. We decided he was getting gluten from his sister's water bottles that he found all over the place and drank out of, and the gluten cereal that my daughters would eat with strict instructions to stay at the table, then spill all over the floor when they were watching TV. So we cut gluten out of all the kids' diets. Our house is now gluten-free. Soon after that change Ryan was back up to 20.5. And now he sometimes even weighs in at 21 pounds, though he must be around 20.75 lbs. because it goes back and forth between 21.0 and 20.5 depending on time of day and fullness of his diaper. 

Anyway, I'm convinced we've found the solution to his problems. His face is looking more full, he has had 2 bouts of diarrhea since he's been gluten-free and they both lasted less than a day. Even my friends are starting to notice how he looks bigger. 

One of the doctors when he was 5 months old and I thought he had Celiac Disease told me, "Babies this age don't have Celiac Disease." Wrong! Babies that age don't get diagnosed with Celiac Disease because it's not the first thing moms or doctors think of. And even when moms like me do think of it, I got talked out of it real quick. I often wonder what would have happened if I had gone with my original gut reaction and insisted we tried gluten-free for a little longer. The kid would probably be at least an inch taller and a couple pounds heavier. But I'm just thankful we caught it now, and not in 5 or 10 years when it's done more damage and caused other problems. 

And thus we embark on another chapter in our Silly Yak adventure. Adults have it easy (relatively speaking). They just don't eat what they know they can't eat. They might complain about it a little or be sad, but they find alternatives and live with it. Babies don't know why mom tells them no to all these tasty treats everyone else gets to eat. I feel like I have to be super prepared all the time because if Ryan sees something another kid has and he wants some, they most of the time can't just share. I try to have acceptable alternatives on hand at all times. Ryan starts nursery at church in 2 weeks. They have snacks. Usually animal crackers and cheese crackers. I have a plan to bring GF animal crackers and GF pretzels for his snacks. But that's just the beginning of the "away from mom eating food" adventures. School will be it's own adventure with class parties, pizza parties, etc. But I've got time to figure it out. And for manufacturers to come up with more GF products. I am encouraged when I think of all the GF products that have been developed in just the 3 years since Jacob was diagnosed. In 3 more years there'll be TONS of stuff.

And now I am back to blogging here. At least occasionally. It's nice to have a place to refer friends or new celiac friends when they wonder what we eat. So I'll try to do a little better now that I have the parenting 3 children kind of under control (it only took me a year and a half).

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