Focus on Fructose

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Let’s take a moment to focus on fructose, shall we?

I’ve had many comments about Jed’s Fructose Malabsorption, about some of the ingredients I use in my recipes, and just general fructose “confusion” about what we’re doing and why we’re doing it.

So, I thought I would clarify a few things about Jed’s diet and fructose issues. (This will be especially useful for new readers who haven’t been reading the journey we’ve undertaken with Jed since September!)

We discovered Jed has FructMal based on some symptoms he had that were not explained by any of his other food allergies or intolerances: runny, loose, light-colored stool since the intro to solid foods, slow or non-existent weight and height gain, and frantic, ‘hyper’ behavior that was beyond normal 2 year old, but not ADHD.

Our first GI would not administer the hydrogen breath test because Jed was just barely 2 years old and the doctor said young children did not do well on the test. Apparently young children don’t follow instructions well (imagine that!) and can’t do the breathing the way the test requires.

I decided to removed as much fructose as I could from his diet to see if an elimination would prove the theory, but had a very hard time with that at first.

As anyone with Fructose Malabsorption (or HFI) knows, there is a TON of information out there about this condition and much of it contradicts! The primary reason for that is obvious: every FM person is different! Just like with FPIES, what works for one will not necessarily work for another.

So we were swinging in the dark.

I learned about Sue Shepherd and her amazing work with FODMAP’s down in Australia, but being in the US I saw that to buy her book would set us back a very pretty penny. At the time, we were not doing well financially (still aren’t, actually) and I *hoped* I could find enough answers that I wouldn’t need to outlay that kind of money for a book.

Along came a dear friend of mine, who works at the Mayo Clinic. She’s a dietician, and one of her co-workers spent the better part of two years tweaking the official Mayo Clinic Fructose Malabsorption “starter” diet. My friend knew I was struggling to feed Jed, so she printed it off the Mayo intra-net and mailed it to me, hoping it would help.

It did!

Darrel and I read it, and I realized that it was a very hybridized version of almost all the FM diets I had previously found online. It seemed to take the best of all of them and put them together in one place.

Dealing with FPIES, egg allergy, dairy intolerance, and now Fructose Malabsorption, well, I’ll take “simple” any day! All the help I can get, right?

So we’ve been using this Mayo Clinic diet as our jumping off point for Jed’s fructose issues. We dropped all the foods it said to avoid, and within a short time Jed was a Whole New Kid!

His speech BLOSSOMED.
His attitude was SWEET.
His sleeping was BETTER.
His tantrums were (almost) NON-EXISTENT.
His poop was NORMAL.

Hello, right path! Glad I found you! It was a joy to realize that the most unpleasant things about our son were NOT actually any real part of him – they were his food messing with him!

So then we began the trialing process; I pick a food off the “avoid” list, try it out on him in some way, and see if his body can tolerate it. Our dietician in Atlanta explained that FM was an intolerance, so he could, theoretically, tolerate foods that are high in fructose, but just in limited quantities or on an infrequent basis.

Trying to figure this out has been…FUN! (No, not really. Total sarcasm there.)

For example, coconut shreds sent him all wiggy. But straight, full-fat coconut milk seems just fine!

Unless I mix it with onion or heat it. (Not sure if it’s the onion addition or the heating that is the problem…we still have to parse that out. I’m leaning towards onion.)

Onions alone are fine for him. Garlic, though? It makes me hate life.

25 stalks of asparagus were a tad much for his body to handle…but 11 stalks made no noticeable difference whatsoever!

Maple syrup has fructose, but he is just fine with that in almost any quantity (so far as we can tell). But evaporated cane juice and straight table sugar? Oh, no. No, that’s just awful for him.

And so it goes. We keep trying things out and finding out what works for us and what doesn’t, and of course, my recipes will likely reflect that.

So I thought it would be helpful to tell you all my “starting point” on this diet, at least in terms of Veggies and Fruits, and then you can click the links for Jed’s Diet at the top of my page to see where we are on trials from there.

That way, if you see I have a recipe for, say, Blueberry Muffins, but you know blueberries, maple syrup and coconut milk have fructose, you’ll understand why I still call that recipe “Fructose Free” or “Fructose Friendly”.  For us, they are.

Only YOU know how you react, though! So I hope my recipes will still be beneficial to many – or even most – of you.  Just keep in mind you’ll have to evaluate whether what works for Jed will work for you, and probably have to tweak accordingly.

Which is totally awesome, by the way! Some of my best recipes came about because of tweaking! Never be scared of a tweak!!

(I’m having a strangely good time saying ‘tweak’ right now…yes, I am a little odd sometimes.)

So here’s a brief excerpt of the Mayo FM Diet – just the veggies and fruits. If you’d like the entire diet, you can contact the Mayo Clinic directly at their Patient Education center and see if you can request a copy. I don’t know if they’ll send it to you or not, but it can’t hurt to ask! (I hope they will!)

FRUITS TO EAT FRUITS TO AVOID
Apriots Apples
Avocado Cherries
Bananas Grapes
Blueberries Guava
Blackberries Mangos
Clementines Papaya
Cranberries Pears
Jackfruit Watermelon
Kiwi All unsweetened & sweetened fruit juice
Lemons All unsweetened & sweetened canned fruit
Limes All dried fruit
Oranges Fruit pastes, sauces & soups, such as:
Pineapples       BBQ Sauce
Plums       Chutney
Pomegranates       Relish
Raspberries       Plum Sauce
Rhubarb       Sweet & Sour Sauce
Strawberries       Tomato paste, sauce & soup, ketchup
Tangerines  
  Avoid the following if fructan intolerant:
  Cantaloupes
  Grapefruit
  Honeydew
  Nectarine
  Peaches
   
VEGETABLES TO EAT VEGETABLES TO AVOID
Beans, snap, green Asparagus
Broccoli* Brussels sprouts*
Carrots Cabbage*
Cauliflower* Cucumber*
Celery Jicama
Chives Okra, raw
Collard Greens Peas, green
Corn Zucchini
Eggplant  
Endive  
Kale  
Lettuce  
Mung beans Avoid the following if fructan intolerant:
Mushrooms  
Mustard greens Artichokes, globe
Olives Artichoke, Jerusalem or sunchoke
Peppers* Beets
Radishes* Chicory root
Spinach Chicory greens
Sweet potatos & Yams Dandelion greens
Swiss chard Garlic
Tomatos Leeks*
Turnip greens Onions, all kinds*
Watercress  
Winter squash  
   
*May be gas producing in some people  

In all fairness, we haven’t eaten ALL the foods on the “Foods to eat” list yet because of some of my prior reading that indicated they were highly problematic for a large number of people. And some of them we haven’t eaten because I simply have not yet learned how to prepare them! But we eat most of them, and Jed seems to handle them well. As he gets more vocal skills, he can better explain to me any physiological or mental effects he feels when he eats, and we can truly begin deciphering his tolerance levels.

For now, though, I have to feed and simultaneously diagnose a barely verbal small child, and that is a huge, very challenging undertaking (as evidenced by yesterday’s post). I have no choice but to observe his behavior, his development and his poo to decide whether we can eat a food or not.

So please understand that I have never – and will never – make the claim that my recipes will work 100% as-is for every FM or HFI person out there. It may seem that I am saying so when I write my recipes, but I am really just asserting that this recipe is fine for ONE FM person – my son.

Take what works from my recipes, and drop what doesn’t work, and have fun experimenting in the kitchen to heal yourself and keep yourself healthy! But I hope my recipes will at least give you a good starting point that will enable minimal tweaking (see, there’s that word again!) to create a delicious, nutritious dish!

Thanks for your understanding and patience! This is a tricky dietary road to navigate, and your comments and advice are always welcome and appreciated!

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2 Responses to Focus on Fructose

  1. My son was juSt diagnosed. Following the plan from childrens hospital i can barely get vegetables and fruit into his diet. It is crazy. How long do you stay off of a food before you reintroduce to see what its effects are?

    • Carrie says:

      Hi Nicole! I’m sorry to hear of your diagnosis. FructMal is tricky. Well, here’s the thing about veggies and fruits with FructMal: eating them isn’t good. We have to be aware of getting enough nutrition into our kiddos, of course, but if a food is making their insides hurt, the food isn’t good for them to eat regardless of what kind of nutrition it might offer. It’s important to start small on trials, because FructMal is a quantity issue. For example, Jed can handle 11 or fewer spears of asparagus, but no more than that. So we have to ration asparagus, or else it goes from being a nutritional boost to being an internal danger. So in your trials, start small and work up in quantity until you reach a point he cannot handle the food; then you’ll know what amount he can handle.

      As for how long we stay off a food before we reintroduce, there’s no set timeframe doctors will give. Since the problem isn’t proteins, it’s fructose, it depends entirely on how long it takes for your son to get back to normal after a reaction. For Jed, he’s usually over a fructose reaction within two days. So on the 3rd day, we could retry a food in a smaller quantity to see if he can handle it.

      Keep in mind, since this is a quantity issue, it’s not just the quantity of each individual food you must monitor but the TOTAL quantity of fructose he’s getting each day. So on days when we feed Jed asparagus, he can’t have any other fructose that day. Either that, or we have to limit him to 5 spears of asparagus so he can have something else questionable. Does that make sense?

      Hugs, Nicole! You’re going to be fine. Have you found the Facebook Parents of Fructose kids board yet?

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