Diagnosis - Fructose Malabsorption

When I last wrote, I mentioned that I would spend the majority of my Presidents' Day holiday at the doctor's office getting tested for a fructose malabsorption disorder.  I had planned my day around the appointment, since it was supposed to take four hours according to the paperwork they had given me.

When I got there, I drank this cup full of an extremely sweet syrup.  As the nurse described it: "It's like sweet tea...without the tea."  Theoretically, I would breathe into a device every 30 minutes for four hours and see if the levels of Hydrogen in my body increased or not.  After 15 minutes, I was already experiencing some pretty uncomfortable symptoms, but I brushed it off because it's never that easy for me.  Usually when I go to the doctor about something, they test me for a bunch of things and then end up saying, "Sorry, but we don't know what is wrong with you."  So I wasn't prepared for such a quick diagnosis!  I breathed into the machine the first time, and when she called me back the second time (one hour after I had arrived), she already had a pack of papers in her hand.  She had me breathe into the thing again, briefly glanced at it, and then handed me the pack of papers saying, "You tested positive.  Here is some information on the disorder, and here is what you are going to have to do."  She went on to describe the kind of diet I would need to be on to heal my body and alleviate my symptoms, and then she sent me on my way, three hours early.

That was almost three weeks ago, and it's been an interesting three weeks.  Despite the fact that my condition really limits my diet, I'm not really bothered by the fact that I have the disorder.  As a completely logical and reasonable person, I went to the doctor fearing the worst.  And by that I mean I had pretty much convinced myself that I had cancer.  So I'll take this over cancer any day!  I'm still relieved that's not what is causing all my problems.

Unfortunately, the information the nurse gave me on fructose malabsorption was not extremely helpful.  I immediately set out on my own internet quest to learn more about what was wrong with me and what my life would look like from that point on.  I quickly discovered that the information on FMD available on the internet was spotty, contradictory, and confusing.  I have an incredibly loving and supportive family, and they joined me in the search to find good information that I could rely on and really use.  Unfortunately, they pretty much found the same things I did.

Interestingly enough, though, we all noticed consistencies in the few websites that were helpful - none of those websites were created in the US.  Blogs, books, websites...all written by people living in Australia (with the exception of the one Canadian blog we found).  Matt and I have joked about this being a sign that we should move to Australia.

I think the biggest break so far occurred last weekend.  My parents met a woman at a farmer's market last weekend who gave them the contact information of the woman who heads up the Celiac Foundation for our area.  Apparently she also has FMD, and so there was hope!  I spoke to her earlier this week and she referred me to a nutritionist who has made her life a lot easier.  I spoke to the nutritionist, and y'all?  I am so excited about my appointment with her!  I am looking forward to being able to eat things other than just meat, rice, eggs, cheese, white potatoes, and oatmeal.  I am looking forward to someone who is KNOWLEDGEABLE coming alongside me and helping me figure things out.

And who knows?  Since this is Spring Break, maybe I will actually have time to post a little bit more!

Comments

Janette Andrews said…
I am also glad to hear it isn't cancer. I will pray for you and that you will find the best way to live with this, and a more variety of food.
that nurse sounds like a real charmer! :p I'm glad you've come up with a gameplan that you're satisfied with. Did all this start during the stress of finding a new job? Sucky! :(

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