Tuesday, November 23, 2010

The real question is what CAN she eat.

You, my loyal readers, may recall that shortly after I started this blog, my daughter Katie wound up in the emergency room because of excrooooociating pain. [You may remember the post because it was just a wee tad bit on the melodramatic side. And I played around with font sizes as I'd seen in some other blogs. Annoying really. Sorry 'bout that.]

Anyway, she was never given a good explanation for what was wrong, largely because the urine and blood test results came back benign: no blood, no proteins. They didn't do any follow-up, like ultrasound or colonoscopy. Since then, Katie continued to have minor flare-ups and was trying to weed out which foods caused her trouble, starting with the "gall bladder diet."

Once we moved back to Ottawa, we got the ball rolling to find out what the heck was up. By this time, she had ruled out so many foods that I swear she was living on rice, peas, fruit, fish and soy milk.

Finally, she saw a medical doctor who also practices holistic medicine. (Not covered by our provincial health insurance.) She sent various samples away. The results came back today, and were quite surprising.

Katie is intolerant to:
  • egg white
  • gliadin
  • gluten
  • wheat
UPDATE: she is also intolerant to dairy. Not sure how I missed that one!

and sensitive to:
  • egg yolk
  • rye
  • kidney beans
  • mushrooms
Intolerant means she just doesn't have the enzymes to digest these foods. Sensitive means she does have the enzymes, but still isn't processing them right, but should only eat them maybe twice a week or so. Fortunately, she doesn't have any actual allergies (e.g., a histamine response), so we don't have to worry about her dropping dead from eating any of these things.

She'll just be in great pain and probably farting up a storm and hogging the bathroom.

We consider this good news, because at least now we know what we're dealing with. And Katie is happy because she can go back to eating dark chocolate, coffee and hash browns. But no lasagne or doughnuts.

The interesting thing is that when she was a toddler we thought she had a wheat "allergy" and eliminated all wheat products from her (and our) diet for about a year. She was accidentally given some wheat when she was about three, and didn't have a reaction, so we thought she'd gotten over it. It didn't occur to us that the "reaction" might take a while to build up.

So, in some ways we're back where we started, but at least we now have a really clear idea of what we're dealing with.

6 comments:

  1. You missed the dairy. :P

    Also, really appreciate that line about hogging the bathroom. 9_9 I usually just get achy and crampy. Just in case anyone wanted to know. heh.

    Love you anyway, though. ;)

    Katie.

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  2. Ooops. I shall update this. Do you want me to take out the bit about the bathroom?

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  3. Just out of curiosity, would oral enzymes be of any use? That's what Laura and I take to digest food since our bodies don't really produce enzymes at all. I know my mom's sister (who does NOT have CF) started taking the same enzymes we take because she was having a lot of gastrointestinal issues. If they would work perhaps Katie wouldn't have to have such a limited diet...

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  4. That is a very good question, Diane. I wonder why the doctor didn't mention it ... Where would one purchase oral enzymes? Are they specific ones?

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  5. Diane, I found this link about enzymes and Celiac (we're not sure if Katie has Celiac yet -- but the gluten, gliadin and dairy intolerance are indicators). Very interesting! http://www.enzymestuff.com/conditionceliac.htm

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  6. Our enzymes are prescription so obviously purchased through the pharmacy. I take a brand called Zenpep, but I just switched from Pancreaze. Laura takes Creon. The main enzyme in all of them is Lipase but there is also Amylase and Protease. My aunt did take the Pancreaze enzymes for her issues, but you'd obviously have to talk to Katie's doctor to find out if enzymes would help in the first place, let alone which one(s).

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