It's finally time for Russ to go gluten-free. I've been putting it off for so long, hoping that it wouldn't come to this, but it's clear that it's in his best interest, so here we go!
Why is it in his best interest?
Russ has had two scopes, and both showed that his villi in his duodenum have mild damage. It's not enough to automatically diagnose him with Celiac Disease (CD), especially since his blood test for CD was negative (false negatives are common), but combined with a family history of Celiac plus Russell's other symptoms, it's always been a distinct possibility lingering in the back of my mind.
His other symptoms of Celiac Disease are:
- poor weight gain and weight loss, even when he eats well
- blood in his stool
- mucous in his stool
- extreme bloating
- abdominal pain
This is skinny little Russell in the morning, after a bowel movement and before eating much:
This is bloated little Russell at the end of the day:
The big factor making us decide to go gluten-free for Russ is that he has been putting words to his pain. In the evenings, he will often say "owie" in the saddest little voice. When we ask where his owie is, he says either bum or belly. And it's no wonder, being as bloated as he is. I've always thought I could ignore symptoms as long as it doesn't affect Russell's quality of life, but now it's clear that he's in pain and I can't ignore that!
Russell's weight gain (or loss, I should say) has been concerning. In the last two months he has gone from 20lbs 3oz to 21lbs 3oz and back down to 20lbs 6oz.
This is what I have recorded for his weight over the past three months:
- 7/26: 20lbs 0oz
- 8/5: 20lbs 1oz
- 8/8: 20lbs 3oz
- 8/13: 20lbs 7oz
- 8/16: 20lbs 3oz
- 8/21: 19lbs 11oz
- 8/27: 20lbs 1oz
- 9/2: 20lbs 7oz
- 9/8: 20lbs 8oz
- 9/13: 20lbs 7oz
- 9/23: 20lbs 13oz
- 10/8: 21lbs 3oz
- 10/22: 20lbs 13oz
- 10/28: 20lbs 6oz
As you can see, he's not doing well with his weight gain at all. When Caleb was 21 months adjusted, he weighed more than Russell does at 22 months. And at birth, Russ weighed more than 3x what Caleb did! It's just not right.
I've come to terms with the fact that I can have healthy kids who aren't on the charts (you don't need to be 50th percentile to be healthy), but when he's eating a good variety and volume of foods and drinking plenty of rice milk and he's still not growing, it's just not ok with me.
So, the next most obvious step would be to remove gluten (found in wheat, barley, and rye and their derivatives) for a time and watch for improvements.
It's going to be weird that Caleb can have things that Russ can't (Caleb can't have wheat, but he can have barley and rye). I'm not concerned about my ability to give Russell good food that is gluten-free, but I'm worried that Russell won't be happy about not having his favorite breads and crackers. I suppose he'll just have to get used to the substitutes.
So, wish us luck in this next big step! It's disappointing, and life-changing, but still so minor compared to what we've been through with Caleb. But still, I wish my little guy didn't have to go through this. It baffles me to think that there are kids out there who eat and drink and grow without problems. That's crazy talk!
Here's to better health for my little Russ!