Monday, January 23, 2012

Fructose Malabsorption testing

Anthony and I visited Seattle Children's Hospital earlier today to have him tested for fructose malabsorption, which I discussed a couple of posts back.

Waiting around, playing Angry Birds on mom's phone.

Thankfully, it's a really simple, non-invasive procedure. How does it work? We arrived at the hospital. We checked in, went down to the lab, and the lab confirmed with us that he'd had a low fiber diet the day before, and fasted for 10 hours before. Yes and yes. Then they had him blow into a bag, as a baseline. He drank a few ounces of a really sweet solution consisting of just fructose and water (the worst part, really, as it led to a tummy ache, but it was nice going down...). Then he blew into a bag every 30 minutes to measure his body's production of hydrogen gas.

All done!
That was it! About an hour into the test, after the third breath sample, the lab technician came out and said, "We're all done. We have a positive result."

Children's then faxed the results to Anthony's pediatrician, who called us later today. She said, "Anthony has fructose malabsorption. The big things to avoid immediately are high fructose fruits, and anything with high fructose corn syrup, which is in everything, I'm afraid."

Our next step is to meet with a gastroenterology specialist, either a doctor or an ARNP, to discuss Anthony's diagnosis in detail. It basically means he can't eat most processed foods (yay!), but it means a lot more work on our part to ensure that he's getting the nutrition he needs. The doctor stressed that "The good news is this isn't something like cancer, diabetes, or celiac disease, it's basically an intolerance." Very true. We're extremely fortunate to have something that means he'll be eating better than 98% of his peers and that is more of an inconvenience than anything else. Still...we want our little guy to feel good.

Of course, now, whenever I see those commercials for the "Corn Sugar Refiners Association" saying, "Corn sugar is just like cane sugar in how it's processed by the body. Sugar is sugar! It's safe!" I yell and scream at the TV. It might be processed similarly by the body, but for a significant portion of the population, it is not the same.

I prefer this spoof from Saturday Night Live over any of those awful commercials.

Monday, January 16, 2012


First, an update. Anthony is doing amazingly off of wheat and fruit. He had no tummy problems at all today. It's pretty miraculous compared to how awful things were the last few weeks. Yay! This is a great thing because, if he'd been sick, he wouldn't have been able to enjoy the snow that fell this weekend!

And here's a funny video. Kipper loves herding us as we sled down our driveway!

Sunday, January 15, 2012

So, how is Anthony, anyway?

Glad you asked. Get out the popcorn, because this is a long blog post.

He enjoys school and hanging out with his friends. He likes going to ride the trolley down in Seattle. He loves hanging out on the beach near our house. The Nick Jr. channel is extraordinarily popular right now. He's addicted to building really neat mechanical masterpieces out of Legos, playing with his dog, and riding his scooter when the weather's nice.

We started the school year on a good note but, unfortunately, this school year has been rough.

When the first parent-teacher conference rolled around, I was surprised and pleased to find out that our boy is one of the best readers in his class! But he's been a little distracted. And he's distracting some of his peers. As we started to try to discipline Anthony for this, we started noticing he was having awful tummy problems. They didn't happen all of the time, but when they did, they derailed everyone's day. Diarrhea, gas, stomach pain have all been pretty regular for our kiddo. Who isn't distracted when they have stomach issues?

We chalked it up, at first, to him sneaking dairy at school. He had a dairy allergy as a baby, but we thought he was able to tolerate small amounts of dairy in baked goods, or really small amounts of hard cheese. We were wrong, of course. We figured out, a month or two into the school year, they were having goldfish crackers for afternoon snack most days, and that he'd occasionally get something at school that had a lot of cheese on it.

We took care of the dairy, but he was still having problems. In late November, I made the appointment for his 7 year check up. The earliest we could get in to the doctor was December 21. We had the appointment, and she suggested several things. Given Anthony's history of having tummy problems with dairy, and my history of the same with gluten-containing grains, we'd try and rule out celiac disease and start checking for food intolerance with blood work (IgG panel for food intolerance). Celiac is an autoimmune disease where, if the affected person ingests gluten (wheat, rye, barley, oats), their body attacks and destroys the vitamin- and calorie- absorbing lining of the intestine. It causes all of the symptoms Anthony was experiencing. Food intolerance is similar, only there's no destruction of the intestinal wall, but frequent diarrhea causes one to not absorb vitamins and calories. If he had celiac, or if specific foods came up as intolerant, we would do an elimination diet and hopefully, resolve his symptoms.

This is what an IgG panel analysis looks like. You submit some large blood samples, and the lab watches what happens to drops of your blood when various food proteins are dropped on them. Dairy, the main category Anthony reacted to, is in the upper left (sorry for the selective blur...was trying to keep some anonymity here).
The blood work came back and the only obvious food intolerance he has is dairy. On a scale from zero to six (six being the worst), his dairy results were all around 3. Most everything else was 0, with the exception of whole wheat, which was barely a 1. This means that his body reacts to wheat, but is it clinically significant? Based on the blood work, not likely. But if a 3 is what he has for dairy, and most dairy makes him awfully ill, I don't know what it means about wheat. So, as I pondered that, his doctor said, "let's move on to fructose malabsorption...".

Fructose malabsorption is kind of complicated to explain, but it's really straight-forward in what it looks like. There are lots of different types of sugars, and they all end in the suffix "-ose": sucrose (table sugar), glucose (simple sugar), fructose (fruit sugar), maltose (malt sugar), lactose (milk sugar), etc. Sucrose is the stuff we sprinkle in our coffee and is actually a glucose molecule and a fructose molecule put together, so it's 50% glucose and 50% fructose. People who have fructose malabsorption, when they ingest too much fructose (anything in excess of a ratio of 1 part glucose to 1 part fructose), they get gastrointestinal symptoms. This is because the body just can't process it, but the bacteria in our gut break it down, and in the process of eating the fructose, they produce hydrogen and carbon dioxide.

Everyone produces a little bit of gas when they eat. We all have bacteria in our gut that break the fiber and other things in our diet that we can't break down. This is usually a good thing. People who have fructose malabsorption have bacteria in their guts that overproduce gas, which is really painful.

What does this all mean for our favorite seven year old? Based on the blood work, we still tried a wheat elimination diet (because it was still the highest non-dairy food intolerance, though it was low level). It helped, but not as much as we hoped. Following the discussion of fructose malabsorption with his doctor, we started reading up on all of the foods that might be offenders: Apples, pears, mangoes, watermelon, and wheat. Yup, wheat has a lot of fructose in it, surprisingly.

Wheat didn't bother us so much because, well, I'm gluten free and Anthony didn't have lots of bread until he turned two. But, apple juice is a staple. Mango sorbet is our go-to dessert because ice cream is dairy. Ugh. We had a few days of denial because...dairy, wheat, fruit?! WHAT WILL OUR KID EAT? (Answer: Meat and potatoes.)

But, then we had a really bad couple of weeks. We had some gloriously sunny and mild days in early January. Anthony wouldn't get off of the couch to ride his new scooter because he was so miserable. Then we had several days missed from school because he was so sick. Seeing their kid miserable and not wanting to have fun really makes a parent want to try anything. We finally went almost 24 hours without any fruit, fruit juice, fruit snacks and wheat (which we've been off of for roughly a week). His tummy miraculously improved. "Mom, I feel great!" Then tonight, he had some mango sorbet. I didn't realize mango was one of the worst things he could have. About 30 minutes later...he was really sick again.

We're not entirely certain that this is the problem, but it's pretty shocking how basic it is and how his symptoms seem to follow the fructose trail. We'll be doing some really basic, non-invasive testing in a little over a week that's pretty fool-proof in diagnosing fructose malabsorption. Basically, it measures the hydrogen the that gets produced by the bacteria, through a breath test.

We'll update things here as soon as we have more answers. As you might imagine, it's heartbreaking and extremely frustrating being a parent of a child with awful tummy problems. We're hopeful that this is it and that Anthony will be feeling great soon. Until we have answers, and you want to learn more about this crazy diet, here's an excellent article on the practical ramifications of a low-fructose diet (it's a .pdf file).

Thursday, January 5, 2012

Anthony's birthday party

Our favorite boy turned seven in early December!

The night of Anthony's birthday was pretty low-key. I made a small cake, he decorated it with some sprinkles, and it was just the three of us. Apparently, though, Larry and I are awful "Happy Birthday" singers, because Anthony plugged his ears and giggled!

The following weekend, though, Anthony had a really fun birthday party. Maw maw came up from Houston to visit! It was also the first time, since he was a toddler, that we had the party at our house. We decided that, instead of inviting his guests for him, we'd let him choose who to invite. That made things a little easier.

It was a nice, intimate party. We decorated the house with some balloons and streamers, made some cupcakes, opened presents, and then played that classic game of pin the tail on the donkey. Of course, all of the kids, except for one, figured out how to cheat and look through the gaps in the mask, so it was really silly.

At the end of the day, everyone was full of sugar and happy, especially the birthday boy. :)