Here’s an update on Landyn:
I’m not sure I ever posted our entire story with him. About 2 years ago, Ryan was diagnosed with Celiac Disease. Around the same time, we noticed that Landyn started having belly aches an awful lot. We were on a gluten free diet for 3 months, and our dr. over seas decided to test him for a gluten intolerance. We did the blood work, then I went home and researched. After doing a bit of reading, I realized that if we were going to test for a gluten intolerance, he had to have gluten in his system. The test came back in the normal range, but almost 4 times higher than Ayden’s low number. So I asked about the validity of the test, seeing as how he was on a gluten free diet for a few months. The first dr. assured us that the test was valid, but after pressing, another dr. looked into it and agreed that he needed to actually have gluten in his system in order for a valid test. So we gave him gluten for a month and had him retested, number was higher and borderline high (something like 15+ was high and his number was 14. Something). The dr. assured us he did not have a gluten intolerance, and his test was completely normal. As a mom, I went with my gut instinct and we pulled gluten from his diet anyway. And he felt better.
This was about 2 years ago. He was good for a year. About a year ago from today, he started having belly aches again. The first time it ever happened, we were eating ice cream and he started crying and I couldn’t figure out what was wrong. I had no idea what triggered it and thought nothing of it. After 3 or 4 months, I noticed it happening more often, he would be eating and just stop and be in tears because his stomach hurt. So we started to play with ideas and looking at what it could be. Asked his family dr. at his 6 year check up and she had no answers, but was going to look into what other food allergies could be associated with gluten intolerance. Then we moved. His belly aches were hit and miss and I could find no pattern. But they were increasingly getting worse and happening more frequently. We made a sick call visit to our new family dr. here about 2 months ago and they sent us immediately for an ultrasound. There was quite a bit of inflammation and fluid built up around his organs, but no obvious issues. The family dr. thought maybe a virus since his lympth nodes were swollen, but all blood counts came back good. So we got a referral to a specialist. She asked that we put him back on gluten for a month, do some blood work, urine sample and an endoscopy.
I was so unbelievably torn. I did NOT want to give him food that I knew would upset his belly. But he was already eating gluten free and still in pain. So we did. I wanted to start pro biotics, but again, the dr. asked me to hold off on changing anything that would help him, only until all the blood work was done, endoscopy and biopsies were done. So for a month, we indulged him in all things gluten. And he didn’t seem to have an upset stomach quite as much. I was a little surprised and started to wonder if maybe he didn’t have a gluten insensitivity after all. We really didn’t change anything else in our diet, except that I started giving the kids raw milk from a local farm.
Last night he was in pain again. I let him eat an English muffin for breakfast, sandwich for lunch and a donut. I thought for sure, that it must be the gluten. We also stopped at the store yesterday to pick up milk and the kids drank almost ½ a gallon yesterday.
We had his follow up appointment today- All biopsies came back negative and gluten intolerance test came back ok. He does have chronic inflammation in 2 places in his intestinal tract. No reason for it except that it’s there. And the huge surprise to us- he’s lactose intolerant!!! We had no idea. Over this last month, he was feeling some what better, we had switched to raw milk. So he was still drinking milk regulararly and eating smoothies that I made, but it was all raw milk. After some looking, I found that raw milk might actually be ok for him to drink. The dr. explained to use that LACTOSE (ending in OSE) is the milk enzyme that our body needs to break down. And LACTASE (ending in ASE) is the enzyme we need. Since raw milk naturally has lactASE in it and lactaASE is the enzyme that helps to break down the lactOSE, it is easier to digest. In the pasteurization/homogenization process, this lactASE enzyme is killed off. So the milk we buy in stores does not have the lactase to help break down the lactose in the milk and that’s why Landyn was in so much pain last night after drinking milk.
Where that puts us now- the dr. gave him a prescription to help the inflammation. We’re not going to use it yet though. We will adjust his diet, limit the gluten (even though tests were normal, gluten still seems to upset his tummy and it’s just something we don’t need in our diet anyway) and use only raw milk and almond milk. He’s also been taking pro biotics, which his dr. was happy with today. Now that we know what it is causing his upset stomach, we can avoid it and hopefully that will also help to eliminate the inflammation in his intestinal tract.