Your Son Has What?

I love seeing the looks on people's faces when I tell them our son has Fructose Malabsorption.  It's somewhere between confusion and "oh that's too bad, I guess, but I'm not really sure so I'll just look concerned".  Trust me, I had the same look when I got the call from the GI clinic and found out we had to do antibiotics and major diet changes and a class with a dietitian and who knows what else! 

So here are the basics about Fructose Malabsorption (referred to as FM from here on out because that's super annoying to type out). 

FM is a digestive disorder where absorption of fructose is impaired by deficient fructose carriers in the small intestine.  It results in extra fructose left over in the intestine.  Fructose can only be absorbed into the blood stream by small fructose carriers or by larger carriers when it has a glucose buddy to attach to...so basically if he ingests more fructose than glucose, we have a problem (side note - Smarties candies are all dextrose/glucose so if you see me giving him massive amounts of Smarties, it's because he needs extra glucose)!  The symptoms are very similar to IBS so we have a lot of fun with that.

The super fun thing about FM is that it seems to affect every one differently.  And everyone seems to have different levels of tolerance for approved/not approved foods.  Like I mentioned in previous posts, he had been sick pretty much his whole life.  He would have these spells where he would just throw up, no food, just mucus.  Now we know that that happens when he has too much fructose and he's constipated.  We knew from around 2 years old that he couldn't tolerate juice at all, we didn't know why, just that it would make him horribly sick to his stomach. 

After seeing the GI doctor for about 6 months, she ordered a Hydrogen Breath Test.  This is the only way to test for FM.  He had to follow a strict diet in the days leading up to the test and then when we arrived at the hospital that morning, he had to drink a fructose solution drink.  For the next three hours we hung out and every 30 minutes the nurse would come out and have him breath in a special bag.  The basis of the test is a failure to absorb the given sugar, which is then metabolized by bacteria that give off either hydrogen or methane. Therefore, the more gas that is produced, the less absorption has occurred.  He was great during the test, had a little upset tummy the rest of the day afterward and about a week later we got the call that it was positive not only for FM but for SIBO (Small Intestine Bacterial Overgrowth) as well.  Basically the poor boy was so full of gas and methane he could hardly function without being in pain. 

 We did a round of antibiotics to treat the SIBO and I had to attend a class at the hospital to learn more about his diet which is a low-FODMAP diet - don't you just love all these acronyms?!?

So FODMAP stands for Fermentable, Oligo-, Di, Mono-saccharides, And Polyols.  Got that?  Yeah, me neither...so we have to cut out wheat, garlic, onion, broccoli, cabbage, beans, legumes, stone fruits like peaches, pears, apples, blackberries, cherries, plums, watermelon, mushrooms, and any sweeteners that end in -ol like mannitol, xylitol, sorbitol, honey, agave, and that's the short list.  I'm finding out more and more what works and what doesn't.  He is very sensitive to gluten, but he can handle moderate amounts of dairy.  He can do strawberries and blueberries pretty well, we eat a lot of corn tortilla homemade nachos, thankfully he can eat cheese!  It has been a steep learning curve for me, but not necessarily a bad one!
 

We mainly treat him through diet changes.  We also have him on a really good quality probiotic.  He can't do the Fructo-Oligosaccharides that are in prebiotics so it took a while to find a good one for him.  He also takes a 1/4 dose of the doTERRA Life Long Vitality pack of vitamins and minerals.  He takes an extra Vitamin D supplement.  We try to avoid Miralax as much as possible.  His symptoms manifest mostly as constipation, pain, bloating and behavior issues (very emotional).  We use a lot of DigestZen essential oil to control the pain when we need it and he keeps Peppermint essential oil with him most of the time to smell if he needs to calm down. The great news is that he's gained about 10 pounds in the past year and a half which is amazing!  I was sure he'd be 50 pounds for the rest of his life, but he finally broke 60 this month!

It's a challenging disease and it definitely keeps me on my toes.  I suspect Charlotte probably has it as well and I think I do too...I'm trying to control it in the rest of us through diet and vitamins and probiotics and oils when needed.  Stay tuned for the next post.  I had the privilege to hear Dr. David Hill, the Chief Medical Officer for doTERRA speak this past week about cleansing and keeping your organs and body working well so I want to be sure and capture that information here as well!