Has this happened to you?
You walk into a new restaurant, sit down and peruse the menu? There appears to be a few safe options, but you are not in the mood to test your fructose intolerance and definitely not in the mood for a fructose volcano? So you decide to advocate for yourself. The waiter comes over to take your drink orders and tell you about the daily specials. You take this opportunity to tell him that you have Fructose Malabsorption. Here is where the blank stare begins. You can tell that the waiter is already thinking about how he needs to bus dishes at table 9 and take drink refill orders at table 11. He is definitely not cued in to you and your intolerance. But, you solider on and say something like, "Fructose Malabsorption is a food intolerance". "I am missing the enzyme to digest fructose." "When I eat foods high in fructose my entire body reacts." At the end of your lengthy description you assert your self and declare I have a fructose allergy. Let's be honest the waiter was lost in translation when you mentioned the word fructose and never heard the word allergy.
It is not the waiter's fault. Fructose Malabsorption is a hard intolerance to explain for adults, let alone for young kids. It is complicated. It is definitely not a one size fits all kind of intolerance. It is as unique as your own fingerprint.
Let's try another scenario common in our world.
You are invited to a co-workers for dinner or better yet your office plans a holiday potluck. At lunch time you walk into the conference room. The 20 foot table is laden with homemade dips; crockpots of chili; store purchased bars, pies and cookies; and salads with dressings that most likely contain honey, high fructose corn syrup or some other man made sugar. To you you don't see a table of amazing comfort foods you see red fructose flags. So many fructose flags that you already feel a fructose volcano growing inside your gut. It's like your body is absorbing the fructose just by looking and smelling it. Your first instinct is to run out of the conference room. But, then you see your boss standing over her crockpot of homemade chili and you freeze, sweat starts to pour down your back and your mouth goes dry. What are you going to say? How do you not walk out of the conference room without a bowl of your boss' chili let alone the rest of your co-worker's great-grandmother's 7 layer bar recipe? Again, you launch into a lengthy description about Fructose Malabsorption. One of your co-workers immediately sizes you up and decides you are just a picky eater. Another one looks at you like your one of those people who only eats from the Earth and doesn't know how to just live a little. You try desperately to regain control of the situation. You start explaining how glucose is a safer sugar and you can eat a minimal amount of foods with sugar as long as those foods contain glucose. You even think, ok, what if I draw a kitchen scale on the conference room dry erase board and explain how glucose helps transport fructose in my body. By this time you've lost everyone. They have their backs turned to you loading up their plates with a sampling of every food on that table. And, you walk back to your desk feeling despondent and lonely.
Or how about my 11 year daughter. Here is what happened to her.
A month ago at school a friend was passing out the oh, so hard to find Carmel Apple Suckers at the lunch table. Have you ever seen these suckers? The ingredient list looks like the back of a shampoo bottle. My daughter, Grace, politely declines the poisonous sucker. But, no the kids at her table won't have it. "Why?" "Why won't you eat the sucker?" "They are amazing!" "My mom drove around to 4 Walgreens just so I could bring these to school." Grace goes for the allergy argument. "I am allergic to fructose." The kids look at her like, "say what?". She says, "yes, I can't eat the sucker because it will make me sick." And then she thinks, "oh no, why did I say sick?" "Now they are going to ask my what kind of sick and I definitely don't want to tell them what would happen to my tummy if I ate that sucker."
So how to we explain Fructose Malabsorption? How do we advocate for ourselves and our children?
Grace and I have been practicing a few new techniques this fall.
Grace was invited to to a new friend's house for dinner a few weeks ago. The mom sweetly texted me and asked me if Grace had any allergies. When I received the text I was thrilled that this new friend had such an awesome mom. Grace was not thrilled. She wanted to immediately cancel the date. Grace does not like to talk about her Fructose Malabsorption. She is getting better now that we started this website, but this is still a struggle for her. Grace wants to feel normal. I looked at Grace and simply said, "you like this girl, you need to own up to what makes you different, you can do this." To my surprise and shock Grace took the challenge. Here is the text she had me send: "Thank you for asking. Grace is allergic to some types of sugar. Grace is really good at knowing what she can and can not eat. She can read labels and understand them." Wow! You Go Girl! You rock! This worked for Grace. This new friend and mom not only empowered Grace to explain her intolerance, but it also empowered her to take action when she was at this friend's house. In the past we have relied on her friends' moms to advocate for her. This is tough, too tough. You basically have to give the mom a dissertation on fructose and labels and hidden sugars.
Earlier this year we went out to dinner at a new farm to table Asian restaurant in Uptown. I had reviewed the menu and website before we made our reservation and found a few things that appeared safe. When the waiter asked for my drink order I told him I was allergic to honey and other types of sugar and needed to know all of the ingredients in the sauce of the dish I had chosen. The waiter responded positively. He returned to the table with a list of ingredients and also mentioned another menu item I ordered. Why did this work? Because I took the word fructose out of the explanation and added the word allergy. And, I tried to keep my explanation simple.
Recently, I went out to lunch with friend I met through Pilates training at one of those new, popular, overpriced salad bars. She casually, without judgment, asked me why I made so many substitutions when I ordered my salad. I looked at her and said, "I have this food intolerance called Fructose Malabsorption." "It is a little similar to diabetes." "My body cannot process fructose sugar." "And fructose sugar is found in a lot of fresh whole foods and salad dressing ingredients." She looked at me and said, "that must be hard." I knew right away that this new friend of mine was a good one! And, to all the people living with diabetes out there including my godmother and husband's good friend I feel for you, worry about you, support you and so hope we can find a cure for your disease. I know my Fructose Malabsorption is nothing like your diabetes. But, people understand your disease and I need people to understand my intolerance because fructose really messes with my entire body.
How do you explain Fructose Malabsorption? Share with me your successes and failures. Let's learn from each other.