12.06.2013

Sometimes Doctors Don't Know Best


Now don't go thinking I hate doctors or anything, considering I come from a family of doctors and am dating one.  But, as much as they might want you to think so, they are not always right, and it is so important to know your own body.

Without giving any dirty details, I've been having GI symptoms for awhile and when they got worse a few months ago I met with a GI doc in Pittsburgh to start getting some answers.  Before I went I'd done some research into my bizarre array of symptoms and found Fructose Malabsorption and knew it was what I had.  Not like I went on WebMD and convinced myself I was dying of cancer, but more like reading people's stories and knowing I had gone through the exact same random things.  The seemingly random foods I can't eat all tied together with this one diagnosis. 

When I went to the appointment I went over everything and mentioned it to my new doctor.  He kind of brushed it off because some of my symptoms weren't quite as bad as he thought they would be if I had FructMal.  Then, he went on to prescribe me an antispasmodic that gave me the most intense pain I've ever felt, and sent me for multiple rounds of blood work that all came back negative.  Then, he sent me to get tested for angioedema, which was kind of funny because that gives you symptoms that are way worse than what I was experiencing.  When that came back negative, he wanted to proceed to scopes.

HOLD UP.

My symptoms aren't bad enough to test me for FructMal but they're suddenly bad enough for me to need an endo/colonoscopy?  No, thank you.  Plus, I had an endoscopy a few years ago and if nothing was structurally wrong then chances are nothing is now.  I knew my body, and I knew it wasn't necessary.

So, I stood up for myself and told him I wouldn't do any scopes until he sent me to get the FructMal test.  They only do it at one hospital in the area, and I was able to get in yesterday. 
After lots of fasting and drinking a grossly sweet concoction, they started testing the hydrogen in my breath every 15 minutes for 3.5 hours.  Basically, if you're absorbing the fructose like you should, the level of hydrogen won't change.  If you're not, it will raise.  If the level of hydrogen in your breath goes up 20 points, it's considered a positive test.  

I went from 1-71.  
It was so positive they let me stop the test early.

I am so thankful I didn't just sit back and waste the time, money, and discomfort on getting unnecessary scopes done.  Moral of the story?  Know your body, and speak up!  Doctors are amazing, but you know your body the best, and it's so important to take an active role in your health!


Now...who can find me a food to eat with no gluten or fructose? ;)

10 comments:

  1. Finding food with no Gluten or Fructose could be hard. Maybe Whole Foods but do they have a Whole Foods in Hunker?

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  2. I've never heard of that before! So glad you stuck up for yourself. I went to a GI dr at Presby hospital in Pittsburgh for my problems when no other dr could figure them out. If you aren't keen on your dr, I'd be happy to give you his name!

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  3. how frustrating! I am a nurse, and I believe that sometimes patient's have to be their own biggest advocates because MDs while are mostly good, there are a lot who seem to brush aside people and their concerns. You have to be forceful or else you get talked into things that unnecessary! Glad you got an answer so now you can figure out where to go wfrom here :)

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  4. Good for you for standing up, lady! I'm sorry for the poop-tastic experience. :(

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  5. Good for you for speaking up for your own body, girlfriend!!! You know I've certainly been through it with all the medical, for lack of a better word, shiiiiiiiit, and sometimes (err, often) we really do have to be our own advocates because only we know how we're feeling!

    Hate that you likely have quite the road ahead, but at least now you have some answers to get you headed in the right direction toward feeling better! Also, I've never heard of Fructose Malabsorption, but you know I'm always here to chat if you need to!

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  6. Good for you! I have an issue with letting doctors just kind of brush off what I say too. I need to stop that, especially if I feel something needs to be done/tested and it's not, because you're right, we KNOW what we feel & our bodies.

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  7. So spot on! Have you read the "I Quit Sugar" program book?? Full of fructose free recipes and from memory plenty of them are gluten free.
    :)
    xx

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  8. Glad you found out what was wrong! Doctors told me I had a "really bad case of strep-throat" which turned out to really be stomach ulcers. You're exactly right, know your own body!

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  9. you are totally right. it is so important to stand up for your own good and tell your concerns to your doctor. If they cant listen to your concerns, then it is time to change the doctor. I am a med student to be and I totally agree with and hopefully, I wont get sucked into the whole i am too busy to listen thing once I start practicing.

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