Doing tests

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.

Why I went gluten-free

I've had weird aches and pains almost as long as I can remember. It started with stomach aches and nausea, which was diagnosed as irritable bowel syndrome when I was in elementary school. I also had body aches, joint pain, headaches, and other issues. Pretty much I think half the doctors (along with friends and family) thought I was a hypochondriac. Not cool.

In the fall of 2002 I moved to Provo for college. One of my new roommates (who has become one of my best friends) had celiac disease. I didn't really know what that meant at first except that she couldn't eat wheat or flour and if she did it made her really sick.

In the summer of 2006 I was pretty fed up with feeling crummy. I always had stomach aches, headaches, body aches, fuzzy/foggy brain, blurry eye site, etc. One evening at work when I was feeling particularly "blah" and frustrated with it all I had a sudden thought- could I have celiac disease? I had learned a lot more about it from my friend throughout the years and had heard her talk to other people who had learned they were celiac and it suddenly just clicked that this could be my answer as well.

I immediately called up my friend and asked her what the symptoms of celiac disease were. She told me there are a ton (I've since found out there are at least 250) and that everyone manifests it differently. I told her my symptoms and she said they all fit celiac. After work I immediately got on the internet to figure this all out. Not only did all of my symptoms fit, but there were more that I'd never have associated with celiac disease. (Sinus infections and canker sores can also occur as a result of eating gluten if you have an intolerance to it.)

I couldn't believe it! All those years of doctors not knowing what was wrong with me (and many probably not believing anything was wrong at all) and I had figured it out! I tested it out and had some blood work done by the doctor and came to the conclusion that I definitely have a gluten intolerance, if not celiac (more on the testing later... this is already a long post).

I am so grateful for my friend! If I hadn't known her so well and learned about celiac I wouldn't have been able to self-diagnose myself. I also wouldn't have been able to get to the point I am now without her. She was (and still is) an awesome support for me in dealing with the changes the gluten-free lifestyle brings, always being there to answer my questions and give me advice. I'd like to pay her kindness forward by doing my best to support anyone else out there who is switching to the gluten-free life.