After spending the majority of my life with a persistent, sometimes debilitating, litany of odd symptoms, last year I self- diagnosed with intolerance to gluten. (only self-diagnosed due to lack of $$/insurance all too often) After a three or four month learning period I was finally firmly on a gluten-free diet as of March 2009. I could not have done so nearly as successfully without the support and vigilance of the man I love.
The actual testing for Celiac Disease requires three blood tests and a endoscopy/biopsy. While there are medical difference that have effects on the rest of my long-term health, in the end it changes nothing for my eating life as to whether i have Celiac or whether i am just gluten intolerant. I simply can't ever eat gluten again, ever. The few times this year that I've accidentally ingested some left me quite ill for weeks.
Here's the fun bit - in order to get the necessary test results to confirm a diagnosis one way or the other requires that I EAT GLUTEN. As much as I crave doughnuts or real pizza dough or a nice hot piece of flaky baklava, the knowledge of how sick I would become from eating something like that has firmly kept me from actually doing so.
Up until now, the discussion of all of this has been that of some hazy, non-specific future time in which i would happily binge on doughnuts for a week before testing. But reality has come knocking on our door. I have a good friend who offered to pick up the home Celiac test for me while in Canada. This week she texted me. The test is coming, and the reality of it is suddenly overwhelming.
I've spent most of the day online trying to find out just how long and how much gluten i have to ingest to get the correct result on the blood test (this is the anti-tTG test). Most people are tested before they go on a gluten free diet so it's a non-issue, but for those who have, the advice from their doctors has ranged from "none, it will always show up" to "4 slices of bread a day for 3 months" which would be hell.
The final definitive medical answer I found: we don't know; it's different for everybody. However, it was made abundantly clear that it takes more time for the antibodies to show up in the blood than it does for the digestive tract to react to the presence of gluten. How much for how long is unclear, but I think we are going to shoot for 1-2 gluten things a day (e.g., a doughnut and a small thing of pasta) for two weeks, or as close to that as I can bear.
I hate the thought of further damaging my digestive tract and immune system in general. I'm not looking forward to the bone pain, headaches, scary-ass mood swings, intestinal pain, and extra hours in the bathroom. I am looking forward to knowing that I have somewhere to start when I can get back to a doctor to confidently say, "look, I've tested positive on the tTG, now you can order the rest of the tests."
Our other worry is, "what if the test comes up negative?" I've been gluten free for nearly a year, so my antibodies might be too low to show on the test. There is also a 2-3% chance that I could have a form of Celiac that wouldn't show up on the tTG. What it really ends up meaning is that getting a doctor to requests the necessary tests in the first place will be more difficult. It means that getting a definitive diagnosis one way or another (Celiac vs gluten intolerance) takes more time and frustration. It means that I spend two weeks sick as a dog just to have the more insensitive people in my life throw the initial test results back into my face as if I've made the whole thing up. (and no, I'm not paranoid, there really are people out there who would do that to me.)
So, I'm thrilled the test is coming. I'm freaked, the test is coming. And through it all the man with whom I will spend the rest of my life is thrilled with me and freaked with me and more supportive than I thought humanly possible. <3
Edit: new blog started from this topic
follow my journey to good health at
http://pecularlypinkliving.blogspot.com
The actual testing for Celiac Disease requires three blood tests and a endoscopy/biopsy. While there are medical difference that have effects on the rest of my long-term health, in the end it changes nothing for my eating life as to whether i have Celiac or whether i am just gluten intolerant. I simply can't ever eat gluten again, ever. The few times this year that I've accidentally ingested some left me quite ill for weeks.
Here's the fun bit - in order to get the necessary test results to confirm a diagnosis one way or the other requires that I EAT GLUTEN. As much as I crave doughnuts or real pizza dough or a nice hot piece of flaky baklava, the knowledge of how sick I would become from eating something like that has firmly kept me from actually doing so.
Up until now, the discussion of all of this has been that of some hazy, non-specific future time in which i would happily binge on doughnuts for a week before testing. But reality has come knocking on our door. I have a good friend who offered to pick up the home Celiac test for me while in Canada. This week she texted me. The test is coming, and the reality of it is suddenly overwhelming.
I've spent most of the day online trying to find out just how long and how much gluten i have to ingest to get the correct result on the blood test (this is the anti-tTG test). Most people are tested before they go on a gluten free diet so it's a non-issue, but for those who have, the advice from their doctors has ranged from "none, it will always show up" to "4 slices of bread a day for 3 months" which would be hell.
The final definitive medical answer I found: we don't know; it's different for everybody. However, it was made abundantly clear that it takes more time for the antibodies to show up in the blood than it does for the digestive tract to react to the presence of gluten. How much for how long is unclear, but I think we are going to shoot for 1-2 gluten things a day (e.g., a doughnut and a small thing of pasta) for two weeks, or as close to that as I can bear.
I hate the thought of further damaging my digestive tract and immune system in general. I'm not looking forward to the bone pain, headaches, scary-ass mood swings, intestinal pain, and extra hours in the bathroom. I am looking forward to knowing that I have somewhere to start when I can get back to a doctor to confidently say, "look, I've tested positive on the tTG, now you can order the rest of the tests."
Our other worry is, "what if the test comes up negative?" I've been gluten free for nearly a year, so my antibodies might be too low to show on the test. There is also a 2-3% chance that I could have a form of Celiac that wouldn't show up on the tTG. What it really ends up meaning is that getting a doctor to requests the necessary tests in the first place will be more difficult. It means that getting a definitive diagnosis one way or another (Celiac vs gluten intolerance) takes more time and frustration. It means that I spend two weeks sick as a dog just to have the more insensitive people in my life throw the initial test results back into my face as if I've made the whole thing up. (and no, I'm not paranoid, there really are people out there who would do that to me.)
So, I'm thrilled the test is coming. I'm freaked, the test is coming. And through it all the man with whom I will spend the rest of my life is thrilled with me and freaked with me and more supportive than I thought humanly possible. <3
Edit: new blog started from this topic
follow my journey to good health at
http://pecularlypinkliving.blogspot.com
No comments:
Post a Comment