May 14, 2010

I may or may not have celiac disease...

The question is: will I ever find out?!

I started reading/learning more about celiac disease about 5 years ago, when I was tested for everything on the planet to figure out what is wrong with me. At that point, I was REALLY hoping I had celiac because it seemed like a much easier thing to handle compared with the alternative, and what ended up being the actual diagnosis (Chronic Fatigue Syndrome). I have written about that previously, so you can read all about it here.

The tests came back negative and my hopes of a somewhat easy fix and a quick return to racing were shattered. I'm not saying that celiac disease is 'easy', but I really don't think following a gluten free diet is that big of a deal. An adjustment? Sure thing! A really tough thing to do? Not really... especially when you compare it to the 'fix' for CFS, which  isn't as clear cut and simple (read: a 'fix' does not exist. Yet?).

About a year ago, I started experimenting with eating a lot less wheat and gluten, realizing that it doesn't really agree with my stomach. I can't say I have been following a strict, 100% gluten/wheat free diet. Probably more like 90%. I mean, I didn't worry too much about the wheat in the soy sauce when I had sushi, and I would sometimes use spelt for baking, along side other occasional slips. After all, I don't have celiac disease, so a bit of gluten every now and then won't cause any harm, right? Things were going OK, stomach was feeling pretty good and I didn't have issues with energy levels.

About 2 weeks ago, I had a bit more gluten/wheat than normal, and my stomach has not been the same since. NOT fun at all, and that is all I am going to say! You don't want the details anyways, trust me. I had some tests done yesterday and got partial results this afternoon. Apparently the tests show some sort of an allergic response, to something. To what, you are asking? Well, I asked that too. The answer I got was that it could be seasonal allergies or asthma. Not likely, because I never had either! When I told the doc that he said we should wait for the rest of the tests and then I should talk to my GP, who is (lucky me) out of town right now.

I am fairly certain more tests will reveal celiac. The problem is that to test for celiac and get accurate results you need to eat that stuff on a regular basis. That means I will need to eat 1-4 slices of bread or equivalent every day for a few weeks before the tests (blood and/or biopsy)! I know my body will not respond well to that and I hesitate putting it through it for that amount of time before getting tested again. So the way I see it, I have two options:
  1. Bite the bullet, eat gluten (sigh) for a few weeks and then get the tests done. At least I will know for sure and won't justify eating a little bit of wheat/gluten every now and then saying 'it won't cause too much harm because I'm not celiac' like I have so far...
  2. Just assume I have celiac and stop eating gluten all together, pretending I was really diagnosed properly. That way I will save myself the pain (and it will be painful) of eating that much gluten before the tests.
I'm sort of leaning towards option #2, but on the other hand I just want to know for sure... so I will have to sleep  on it (and wait for the rest of the test results too).

As a side note, I think limiting gluten in ones diet is a good strategy, regardless of whether you have celiac or not. More on that later.

3 comments:

Derek WL said...

Haha Or you could be like me and keep eating it in ignorance for AGES before finally getting tested...

I don't even like thinking about how much gluten I ate before I found out... No wonder the tests were quick and conclusive :)

Anonymous said...

Just food for thought - I have been eating strict gluten free for 2 years and it makes a big different to cut out all gluten (yes, I bring my own soy sauce with me to sushi!).

I too, went through all the tests for celiacs...as did 9 of my cousins and guess what, only two have ever tested positive. Even my GI doc told me - the tests are not very good. The true test is how you feel gluten free.

We all eat gluten free (strict) and feel great. I figure why go through all the tests, go with results...if you feel better, continue eating gluten free.

It is possible to be 'gluten intolerant' and not have celiacs. Hope that helps.

Jen

Noa said...

Thanks Jen!

I know I have a sensitivity to gluten and it has made a huge difference when I started cutting it from my diet, but I haven't noticed any differences when eating things like spelt and soy sauce, so I haven't been too worried about that.

My theory is that since I have been mostly gluten free for about a year now, smaller levels of gluten are starting to affect me negatively and my initial thinking is the same as yours.

Derek: I can't believe you actually managed to survive in AZ eating all that pasta... yikes!