When I was diagnosed with Fructose Malabsorption 10 + plus years ago my dietitian gave me a list of safe and unsafe real foods; another list of food products and additives (including high fructose corn syrup) that were high in man-made fructose; and an understanding of how fructose and other sugars traveled around and were digested in my body. Within weeks of changing my diet I started to feel like a new person, actually more like the person I was in my 20's when our food sources weren't so complicated.
It never occurred to me that my entire body would change, not just my gut. Finally I had an answer to why I was feeling so awful. One month into changing my diet I started to notice many changes. I wasn’t seeking out a mid-afternoon Starbucks run. I could make it all day without yawning. I could actually focus on a conversation in the late afternoon and not feel like I was living in Seattle battling the fog. When I woke up in the morning I didn’t feel like an 85 year old. In fact I started jumping out of bed ready to tackle the day. And, my first holiday season without bronchitis and too many antibiotics was a holiday miracle!
It was like my whole body had been under attack, not just my gut. Fructose Malabsorption had wreaked havoc on my entire body.
For the first 4 years after my diagnosis I was living a healthy life. I continued to follow my dietitian's advice and had learned how to balance my daily sugar intake. Yes, I still had accidental fructose overdoses. But, they didn't happen as often and they weren't as severe. I assumed that everyone living with Fructose Malabsorption felt like I did after getting diagnosed. They felt lucky, they celebrated, they had an answer for why they were feeling so lucky, and they had a diet plan. Wow, I was so wrong!
When my daughter, Grace, was diagnosed 6 years ago many of my assumptions about Fructose Malabsorption went out the window. My assumption that my diet would work for Grace was wrong! My assumption that she could eat the same foods that I could was wrong! And, the assumption that the foods I couldn't eat wouldn't be healthy for Grace was wrong! I was actually extremely frustrated. Why wasn't my diet working for Grace? Why was she still having tummy issues? I felt like a terrible mother. I couldn't take her tummy pain away.
After a lot of trial and error and some soul searching I talked to a dietitian and learned a huge lesson: everyone's gut is unique and each person has a different gut voice. What works for me, doesn't necessarily work for Grace and may not work for you either. I felt like I was back at square one. How was I going to teach a 6 year old to find her gut voice and then teach me how to care for it.
Grace and I struggled for six months. We kept a food journal and a symptoms journal and sometimes wanted to throw both journals in the trash when we couldn't determine what was working and what wasn't working. It was like Grace's gut was a giant scientific experiment that had a 6 year old temper. But, a few months into our journaling we started to see more symptom free days. Grace started to thrive not just survive. She was a happy kindergartner having playdates, playing hockey and spending time with her brother.
Flash forward 5 years later to March 2018. Grace and I decided to start a website/blog about Fructose Malabsorption. We were looking to connect with other people like us, people living on this Fructose Malabsorption roller coaster. We wanted to learn from others and I wanted to empower Grace to share what she had learned about her gut and Fructose Malabsorption.
In the last 7 months we have connected with 1000's of people living with Fructose Malabsorption and have learned many lessons. The biggest lesson is the same as the one I learned when Grace was diagnosed: everyone's gut is unique and each person has a different gut voice. We all have to find what works best for our gut and learn to listen our gut voice.
Through this journey I have also learned that we, Fructose Malabsorption patients, also have things in common.
1. We know that high levels of fructose sugar cause a Fructose Volcano in our gut: a volcano waiting to erupt causing gas that makes you feel bloated, producing bowel wind, and changing your bowel output. A volcano that causes chronic inflammation and can affect all aspects of our health. But, we have an answer! We know what the culprit is!
2. We know that glucose is like a spaceship transporting fructose across the gut barrier into our bloodstream thus preventing the fructose volcano. By paying attention to the fructose and glucose loads in food you can alleviate your symptoms, stop feeling like a volcano is about to erupt from your gut, and start living a healthy lifestyle again.
3. Eating protein sources with essential amino acids also aids in the digestion of fructose. For the last few years I have intuitively known that protein is my gut's friend. I have even figured out that if I want to eat vegetables or fruit that are higher in fructose eating a protein source with it helps. I never knew scientifically why this worked, but I intuitively knew why. Recently one of my new Fructose Malabsorption friends shared an article from the Journal of Pediatric Gastroenterology and Nutrition that proves my theory. Amino acids, found in proteins, have been scientifically proven to aid in fructose absorption.
4. Yes, we all have a unique gut voice and need to find this voice and listen to it. Because of our malabsorption we become intuitive eaters. We learn what works and what doesn't work. We know how to feed our guts, how to make healthy choices and how to find joy in safe eating habits. It's as if each of our guts has it's own one of a kind fingerprint.
5. Fructose Malabsorption is a roller coaster. Sometimes you feel like you are on top of the world feeling 100% healthy, and sometimes you are plummeting to the ground towards a Fructose Volcano. We are not alone. We have Fructose Malabsorption in common. We can be in community together, support each other and teach each other. "Alone we can do so little; together we can do so much." (Helen Keller). Thank you for teaching me, supporting me and supporting my daughter. We are healthier because of you!
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