Proper Testing for Fructose Malabsorption

Technically, Tootsie didn't test positive for Fructose Malabsorption until yesterday - although we were quite certain she had it based on her symptoms. We attempted the Fructose Tolerance test back in May 2010, but the test wasn't done properly at the leading Children's Hospital in our state. She wasn't instructed to follow a strict fasting diet the day prior to the test and the lab tech stopped the test 3o minutes in, saying she was positive for FructMal because her first reading was over 20ppm. We met with their dietician a couple weeks later who handed us a printout with foods to avoid. She had no knowledge on FructMal and the information given was something I could have printed from the internet. The entire appointment was about 15 minutes. We left there feeling even more confused and upset than when we started. We then made an appointment to meet with their gastroenterologist. We had to wait 2 months to get in! We were so anxious to meet with a "specialist" that could tell us what this digestive disorder was all about and how to keep our little one nourished and healthy.

This appointment turned out to be a HUGE disappointment. We were suppose to have at least an hour with the GI specialist, but he was running behind so we had about 20 minutes to spill our guts and tell him our daughter's history, symptoms, and our concerns. At the end of the appointment he told us we just needed to feed her more because she wasn't growing and gave us a list of high calorie foods - most of which contained high levels of fructose. What the heck! He said our next step would be to make an appointment with the behavior specialists regarding our concerns with her moods swings, night terrors, and episodic fits of rage. I broke down and started sobbing when he said that. I knew my little girl and I knew that these changes we were seeing in her were not "behavioral" problems. I knew they were related to her tummy and her food intolerance...but since I'm not a doctor I didn't know how it was all related. Again, we made the hour drive home with no more information than when we started. It angered me to receive the bill...for what?!

So Hubby and I set off on a mission to find answers online. We found that most of the information and research was coming from Australia. I was ready to hop on a plane and find a true specialist! During these countless hours online I stumbled upon a blog - written by an American Mama!! I was thrilled! Even more thrilled to find out she lived just a few hours from me! She also has a little girl with FructMal. She pointed me in the direction of their GI specialist at a different Children's Hospital about 2 hours away. I gave them a call and they were able to get us in 2 weeks later. This is now 5 months after our initial dealings with the first hospital. We had a wonderful appointment with Dr. L! He spent 1-1/2 hours with us and documented everything we said. He and the dietician met with us that day and they both suspected SIBO (Small Intestine Bacterial Overgrowth). We made an appointment with the lab - for a fructose tolerance/SIBO breath test - and were given the following instructions:

1. No antibiotics 7 days prior to test

2. No whole grain foods, bean/legumes or high fiber cereal 24 hours prior. No food or drink 10 hours prior.

3. The child must be fully awake a half hour prior

4. No exposure to anyone who has smoked half hour prior and for the duration of the test

5. No physical exercise for 2 hours prior

6. Rinse mouth with plain listerine (the amber colored one) before the test

7. Refrain from taking medication the day of the test until after testing

**Fasting Diet 24 hours before the test:

White Bread (limit 6 slices), White Potato, White Rice, Chicken Breast, Turkey Breast, Tea/Water. No toppings other than salt & pepper.

We geared up for the test, but little Tootsie was too sick and went into a hypoglycemic fit at 10AM. There was no way she was going to tolerate the fasting all day. She refused to eat any of the allowed foods. We had to cancel the appointment - we were SO bummed!

Dr. L decided to treat her for SIBO based on her symptoms. We were so thankful! She started on a course of Flagyl, which lasted 2 weeks. Her digestive symptoms greatly improved and she was finally eliminating like a healthy girl. Her reflux, heartburn, gas and bloating went away! Her mood swings, sleep disturbances, and hypoglycemic fits of rage - however- began to worsen. New signs and symptoms that showed up were a very itchy bottom, a thick white coating on her tongue, anxiety, and bouts of hyperactivity. I immediately started researching Yeast.