Tuesday, April 5, 2011

My GF Journey: Doing tests

 I realized I haven't posted very much about my gluten free story.  I had another blog before this where I posted the story, but I didn't put it on Gluten Free in Utah.  Here is part 2 of 2 about my gluten free journey.  (You can find part 1:  Why I Went Gluten Free here)

So once I figured out there was a good chance I had a gluten intolerance I decided I'd better stop eating gluten, but also that I should find out what my doctor had to say about it. I can't remember the exact time frames, but basically I tried to go gluten-free, messed up within a week or two, saw my doctor sometime during those 2 weeks, had blood tests done, and had the tests come back negative for celiac.

Now, you may be wondering why in the world I would do something as extreme as going gluten-free if I'm not celiac. Here are my answers:
  1. I still might be. There are a lot of reasons I say that. Some are founded by medical research (done by other people, of course) and some are just what other people have told me. A few of the reasons are:
      • I had already started my gluten-free diet when I had my blood drawn. I don't think my doctor knew very much about celiac disease. I've come to this conclusion based on the fact that he told me it was okay that I hadn't eaten gluten for a week or two. Some sources say you need to have been eating gluten for at least 3 months prior to having your blood drawn.
      • I don't think the correct blood tests were done. There are 4 blood tests that are supposed to be done to determine if a patient has celiac disease or not and then the results have to be looked at in a certain way. Many doctors don't know enough about celiac to know the proper procedure for these tests and, like I stated above, I think my doctor is among those who don' t know enough about it.
      • Even if the blood tests were done correctly you can still receive a false negative (they say you don't have celiac, but you actually do). There are other tests that can be done that are more conclusive (I'll discuss these in another post).
      • Someone (another celiac) told me that for some people they have to have celiac for at least 9 years before it will show up positive in their blood work (and it will only show up positive if they've continued to include gluten in their diet that whole time). Don't know how true this is (she read it in some book), but I figured I'd share anyway.
  2. I could still have a gluten intolerance. Which can cause just as many problems as celiac, but it isn't doing the damage to your intestines like it does if you have celiac. I have read that if you have an intolerance and continue to eat gluten, the intolerance can become celiac (if you have the gene for it).
  3. Most importantly: I feel better when I don't eat gluten. Actually, that's an understatement. It's more like, I feel awful if I do eat it. Maybe I'm just crazy (like all the doctors thought) and it's all in my head and I don't have any sort of gluten intolerance at all. Maybe it's having the whole "placebo effect" on me, but hey, I feel 100 times better than I used to and that's a good enough reason for me.

1 comment:

Paula Decaria said...

Your story sounds identical to mine. There is such a thing as gluten intolerance, if only doctors understood that. I feel a thousand times better than I ever have, so whether or not I have an offical diagnosis from a doctor doesn't matter to me, I am just happy I can enjoy life again. (And I'm happy I discovered it in my boys before they had to suffer for years, like I did).