Fructose intolerance

The other day I fed Ellie a banana.

We have been eating very limited fruits and when we do have them we primarily eat low-sugar choices like blueberries and apples. But there was a banana lying around the house and Ellie asked for it and I thought, “why not?”

She ate the whole thing up enthusiastically – along with some almond butter – while we were at the park and a warm feeling swelled inside me. I have been really struggling with feeling like Ellie’s diet is far more restricted than necessary right now, and I wanted to believe in my heart that the banana was going to be OK. We had our snack in the park and afterward I pushed Ellie in the swing and then we watched our dog Pepe run around the field. About 30 minutes later, suddenly, Ellie practically doubled over. She looked up at me and said, “Mama, I have a tummy ache.”

She was suddenly in so much pain that she couldn’t walk back to the house. I carried her home – cursing myself for taking a risk and hurting my baby. All that evening Ellie was very gassy, which is not a common problem for her. That night’s bedtime was a nightmare with many requests for an Apple Cider Vinegar drink to soothe her upset tummy. She was up several times in the night.

That evening I was doing research online – trying once again to get to the bottom of my poor baby’s tummy problems. I miraculously came across this article, called 3 reasons why coconut milk may not be your friend. Since Ellie’s coconut trial had gone poorly, I was intrigued. And I was very surprised to read that some people can’t tolerate coconut milk because of fructose intolerance. I HAD NEVER HEARD OF SUCH A THING.

So I quickly googled “fructose intolerance” and was absolutely astounded and what I found. Not only can people with fructose intolerance not digest the sugar in fruit, they also have trouble with other foods, like cabbage, broccoli, peppers, sugar snap peas, whole grains and dairy. These are all foods Ellie has struggled with. What happens physiologically is that the human body cannot digest more than a certain amount of fructose in one setting. In people with fructose intolerance that threshold is very low and when the fructose isn’t absorbed it sits in the gut and ferments, causing gas, pain, constipation, diarrhea and other IBS symptoms.

The deeper I researched the more I found that fructose intolerance is a tremendously common source of undiagnosed, recurrent abdominal pain in children. In one study of 245 children aged 2-18 with unexplained chronic abdominal pain along with constipation, gas, bloating and diarrhea 53.9 percent tested positive for fructose intolerance. And when those kiddos were put on the appropriate low-fructose diet 100 percent reported their pain completely went away.

I find this outrageous. We have taken Ellie to countless doctors, including two gastroenterologists and I have never – NOT ONCE – heard of this condition!

This theory makes so many confusing episodes in Ellie’s past finally make some sense.

For example, when Ellie was about a year old and she was labeled as “failure to thrive” and was up every night with tummy aches. Her gastroenterologist at the time told me I had to stop breastfeeding her and put her on a medical formula called Elecare. I was so desperate to help Ellie that I took the free case of formula home and gave her a sippy of the nasty stuff that very night. Ellie was so sick that night it was unbelievable. Her stomach was cramping, she had reflux and she screamed in pain. I contacted the GI and told her what had happened and the GI’s response was, simply, “that’s not possible.” She told me it’s impossible for a child not to tolerate a hypoallergenic formula. I told the GI it was outrageous that she did not believe me, and I ended that doctor-patient relationship. Now – A YEAR AND A HALF LATER – I can finally make sense of that episode. People with fructose intolerance cannot digest fructose and what is high in fructose? High fructose corn syrup. And what was that nasty formula chock full of? Yes. High fructose corn syrup. The answer was right in front of that GI and she didn’t see it because she refused to believe a mother.

This theory also explains other bad episodes, like the fact that our time on the Specific Carbohydrate Diet was a huge failure. I was feeding Ellie bananas and pears and honey regularly, because they were “legal” sweet treats. When we switched to GAPS Intro she suddenly felt much better. (Not that our time on GAPS was problem-free – far from it – but it did temporarily resolve the fructose problem.)

Recently we let Ellie have white rice during several special occasion meals out at restaurants. We held our breath and all three times she’s been completely fine! This was incredibly confusing, given the fact that we believe we’re treating gut dysbiosis with a grain-free diet. But if you look at the list of what’s safe and not safe to eat on a fructose intolerance diet, white rice is in the “safe” column. Quinoa and buckwheat are not mentioned, but I imagine her bad experiences with those foods could also be related to fructose intolerance since I’ve read elsewhere that whole grains should be avoided. How fascinating that a refined grain like white rice might be safe for Ellie – this goes against so much I’ve read and what we’ve put into practice for the past year.

A few days ago Ian and I took all this information in to Ellie’s current primary care doctor – a wonderful naturopath who listens to her patients (and their parents)! Not only did she quickly research the topic during our appointment, and find out how to order a test to confirm whether Ellie does indeed have fructose intolerance – she believed us, and she praised us for never giving up. “You guys are going to be the ones who figure this all out!”

This week we will get Ellie tested and will hopefully finally have an answer. This child has had more tummy aches than anyone should experience in a lifetime. I feel so angry that this wasn’t discovered sooner, but equally grateful that we’re figuring it out at all.