Until you are in a situation where dietary restrictions affect your family, it is very difficult to imagine the amount of life-long adaptations and daily considerations that come with the territory.
To say Maddie’s fructose intolerance was a “game changer” is an understatement; her diagnosis 2.5 years ago had nearly as large an impact on our family and daily lives as her birth 3 years ago.
It has changed practical, everyday things like what food we buy, what we choose to eat and going out to dinner.
It has changed our social habits and family time, too.
No random ice cream trips on hot summer nights.
No cookies nor candy treats.
Not even any birthday cake.
We’ve grown accustomed to bringing along our own food wherever we go. We’ve found it easiest to provide the snacks she’s given at preschool and feel lucky to have found a particular brand of cookies that are made with a sweetener she can reasonably tolerate.
Dealing with any type of food intolerance or allergy in your family falls anywhere from Inconvenient at Best to Downright Terrifying if your child’s allergy could result in death. Maddie’s issue is not a fatal one, though its uncommon nature makes for a different set of challenges.
Many people have never even heard the term “fructose” before, let alone have an awareness that others can be sensitive to it or the incredible number of foods that contain HFCS or other artificial sweeteners (This is not limited to obviously-sweet foods either. I can’t think of a blander food item that Saltines crackers and even they contain HFCS).
If Maddie’s sensitivity was to a more common food, it would be a lot easier to ask questions of a party hostess or waiter, or quickly find allergy information on packaged foods. But it is what it is, and this is our reality.
We’ve managed to successfully cross each hurdle as it’s been presented to us. Maddie is now 3 and we’ve tackled everything up to and including preschool snacks, potty training rewards, Halloween, and birthday parties.
Our next task?
Eating out.
Maddie has reached an age where she can make the connection between the foods she eats and the pain in her belly. This is both a blessing as well as a curse because her ability to make that connection – and then articulate it to me – means my heart sinks a bit each time she tells me that some food I thought was OK for her, turns out to have been causing her pain.
I’m not comfortable with the frequency I’ve been hearing this from her recently and now I’m worried my baby has had a belly ache more often than not during her 3 years on this Earth.
And to make matters worse?
The only way to know if a certain menu item is safe for “Maddie consumption” is to let her give it a try.
Making the decision to take that gamble never gets any easier.
I’m sure that has to be incredibly difficult. My daughter had an egg allergy, and it took many months of scary testing to figure out what was going on. She has since outgrown it, but it was hard to keep her away from one of her favorite foods! I can’t even imagine having to keep her away from so many. I hope it gets easier as she gets older.
Thank goodness she grew out of it!
Oh, I’m so sorry. I had no idea.
I can only imagine the sinking-heart feeling that your baby girl may have been hurting without your knowledge.
How sad for such a sweet little thing…
“I’m worried my baby has had a belly ache more often than not during her 3 years on this Earth.”
As a parent, this was a gut-wrenching statement to read. Lil’ Bit is still young and has shown no signs of food allergies yet, and I pray she never does. I’m so sorry this is your reality.
I always knew from you twitter bio and things you’d mention to me that you were anti-HFCS – but I never actually knew it was due to an allergy with Maddie. I can imagine this is so very tough – especially the parties and eating out part. Hopefully you have found some restaurants in your area that are Maddie-Safe! And hooray for those cookies that you found!
Dude, you have NO idea how big a find those cookies were!
Wow, that must be so difficult! You are doing an awesome job, mama.
So tough. Two of mine are allergic to dairy and that makes things so tough, I can’t imagine having to sort out fructose from everything.
That sounds just awful. I can’t even imagine. At least she’s able to tell you now what makes her sick, but yeah…that must be hard to hear all the time.
Yikes. I had no idea you guys were dealing with that. The positive is that you understand there’s a problem and what it is, while not always what foods cause it. A lot of kids go undiagnosed for quite some time. I’ve read about kids suffering from different problems that cause them to act out and their parents unknowingly thinking it was a discipline issue and punishing them. I can only imagine how hard it is to see your daughter in pain but you can help her through it and as she gets older I’m sure it will get easier. Can she grown out of it or is it for life?
I didn’t realize how much HFCS really is in everything! I don’t have personal experience with food allergies, but I have friends who do, and it really is a ton of work! (but you know that, obviously.)
I’m so sorry to hear that you are dealing with this–that has to be extremely difficult on all involved. But know that you are doing all that you can to make sure Maddie’s diet is a healthy one, complete with all the nutrients and proteins.
Recently I was dealing with various food intolerances, too, and though I’m slowly reintegrating problem foods back in, the stress that went along with that (not to mention the anxiety of what foods are safe to eat) is something I hope never to have to experience again. I’m hoping this is something that gets easier over time.
My thoughts go out to you all. XOXO
dietary restrictions can play such a big part in life – my husband and i were introduced on a blind date by mutal friends who said we were perfect for each other b/c we both don’t eat dairy. it’s great to be married to a guy who is always game for a cheeseless pizza
I’m so sorry Liz that you and your little have to deal with this on a daily basis. I know that as a Mom, it pains you to wonder how much pain she has had w/o knowing b/c she was unable to verbalize it to you.
Thanks so much for sharing her story and for increasing awareness. I would really love to do a column on this topic and interview you about your experiences. XO
I know how you feel to a small degree (I have gluten intolerance). But so far so good with my kids not inheriting it because it is infinitely harder to have our child suffer than ourselves.
Just catching up and wanted to say what a bummer for you guys. I don’t eat gluten and am slowly cutting out dairy so I know how it can be. Good luck and hang in there.
OH, man! This is such a tough one! My son is so picky and I have a hard enough time trying to figure out what he can eat when we are out. But the repercussions of me choosing something he doesn’t like is just that he won’t eat it- not that he will and then have a belly ache. That is a really tough challenge and it is awesome that you have come this far. Good luck finding all the right foods! I still remember those gummy candies you recommended months ago. Now it makes a little more sense why finding those types of foods are so important for you guys!
Oh that sounds rough. My 2.5 yr old is intolerant to bananas, as well as allergic to peanuts, so I have had to be careful about what he eats as well. It has been a lot less trouble than what you have been through with your little girl. I hope it gets easier.
Hi, my husband has Hereditary Fructose Intolerance, you do learn to live with it, we eat out, go on holidays, I agree birthday cakes are a pain, we’ve had Cheese Scone cakes, Pork Pie cakes and what ever else we can come up with. Luckily he loves his food so doesn’t get bored with it. He eats very plain food, and can’t tolerant any artificial sweeteners, so we have to check the ingredients when buying anything new. It will get easier for you and your daughter, you do learn to live with it. Good Luck.
Thanks so much for your kind words and support. She’s 3.5 now and it gets easier and harder all at the same time. This is our first year of preschool, and I know that for a while at least, all the treats that are used as rewards, school parties and birthdays are going to be the biggest hurdle.