And Then There Was an Answer

Finally, finally, after all the specialists, the tests, the pain, the EGD scope, the pain, the food exclusions and eliminations, the pain...oh the pain, the lack of sleep, the crappy specialists and their lack of help or apparent knowledge of gastroenterology, the elemental formula, the sadness...we have an answer.  I'm sure it's not the final answer, but it's something.  Something that proves my child nor I are crazy.  Something that will finally, finally, finally lead us to a life of semi-normality, a life free of pain for my sweet little Lucy, despite all the odds being stacked against us to ever find a solution (or, rather, the lack of any real help from the medical establishment, both mainstream and alternative.)


This weekend , Lucy took a fructose breath test to test for fructose malabsorption.  This means she fasted for 12 hours and then in the morning, drank a fructose solution and blew into a bag into which we stuck a vial that filled with her exhaled air.  When one doesn't absorb fructose, it sits in the small intestine and is instead digested by the bacteria that live there.  These bacteria devour the sugar and in return output gases, mainly hydrogen and methane, causing intense pain and bloating, among other things.  Within 30 minutes of drinking the solution, Lucy was in some pretty intense pain.  The clinical standard for a diagnosis of fructose malabsorption is a change in the combined gases of 15ppm...Lucy's changed 81ppm!!!!  Definite positive!!


The next thing she needs to be tested for is small intestine bacterial overgrowth (SIBO).  This is tested for the in the same manner as fructose malabsorption, only the solution drunk is lactulose.  Remember those bacteria I told you about, sitting around eating up the fructose that won't make it's way through the intestinal wall?  Well, they don't just sit around eating the fructose.  Nope.  They multiply.  And the more well fed they are, the MORE they multiply, until they have overgrown, and eventually, one has bacterial overgrowth.  So now, these bacteria in the small intestine are happy and well fed and reproducing like rabbits and causing more and more gas, and more and more damage.  Many of the enzymes with which we digest our foods are actually created in the brush border of the small intestine.  As this border is damaged by the bacterial overgrowth, one loses proper production of these enzymes, too, and thus the ability to break down even more sugars -- lactose, disaccharides, and more. Eventually, it doesn't matter what is consumed...the outcome is almost always pain and discomfort.


Now, this is also kind of a chicken and the egg type thing.  Sometimes, SIBO happens from other causes in the body - too many antiobiotics, too much constipation, slow motility, etc - and actually causes the fructose malabsorption (fructmal), lactose intolerance, etc; but, sometimes the intolerance can be the cause of the SIBO.  The only way to find out is to treat the SIBO with specific antibiotics, follow a specific diet afterward for at least a few months, and retest to see if the intolerances are gone.  Often, when SIBO and fructmal/lactose intolerance are found concurrently, treating the SIBO eliminates the intolerances.  Even when it doesn't eliminate them, it tends to drastically reduce them, allowing the affected to person to tolerate these sugars in larger amounts (though still small compared to the general population.)


For the time being, Lucy will be following a low FODMAPs diet.  FODMAPs is an acronym for Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. This is the chart we are using to know what foods are safe.  In addition, she is also following the Specific Carbohydrate Diet, or SCD, which is a decades-old protocol for healing the gut.  Lucy is currently in Stage One.  Lucy also does not have proper enzyme levels for any of the disaccharide sugars, which is part of what makes SCD so important for her.  Read about the science of SCD here.  While combining the two diets is limiting, it is like a great big buffet after two months on an elemental diet of formula only.  Lucy is doing well on it and sleeping better, and in much less pain.  We have a long journey ahead of us still, but I feel we are finally, finally, finally traveling the right road.