April 13, 2009

Where Do I Go From Here?

A couple weeks ago I received a phone call from my doctors assistant. My doctor was wanting her patients with Celiac's Disease to undergo a blood test to see if they really had Celiac's Disease or not. Apparently, it's been reported a lot lately that people are being over-diagnosed as having Celiac's Disease.

At first I said I didn't feel a need to. I had a colonoscopy back in 2001, and my doctor at the time said I had Celiac's Disease. A colonoscopy is the best way to diagnose the disease, so I have felt confident in the results.

There have also only been a few times each year when I feel the pain I had before I started the Celiac's diet. That got me to thinking. I don't cheat on my diet. Almost every "reaction" I have had has come after a trip of some sort. When the pain begins I have to think about what I might have eaten that could have had gluten in it. It has never been something that I knew I ate-just a guess.

So I called back and agreed to have the blood test done. I had to eat some bread before the test to make sure I had gluten in my system for when they tested my blood. Eating the bread didn't cause me any pain. Interesting. I got a call from the Gastrointerologist today-my test came back negative for Celiac's Disease.

What does this mean??? Apparently, I don't have Celiac's Disease. But what about the colonoscopy?? Only 1 of my 2 levels was raised (I have never known what that means)-that did not automatically mean that I had Celiac's. But I was on the diet and my symptoms had improved so much. I don't understand. I talked to the assistant in the Gastrointerologist's office after she gave me the results. The doctor in her office, the one who gave me the colonoscopy, had written in my file almost 8 years ago that my colonoscopy came back negative for Celiac's.

My doctor at the time said I had it. Because the diet cured my symptoms, and 1 of my 2 levels was raised. She diagnosed me as a Celiac even thought the Gastrointerologist had apparently written her a letter saying I wasn't. What?? Who does that! Shouldn't she have told me the specialist said I was negative for the disease?!!

The assistant I spoke with today said it could be a play on the Grave's Disease we Know I have. But now I need to go to my currant doctor and get a referral for an allergist, an abdominal ultra sound, and I need to have blood work done to see what my health issue has actually been.

I must admit that I'm scared. I'm scared to eat the food that I have believed for almost 8 years to be the source of pain. I'm scared the pain will return or that the doctors are wrong again. I'm scared to eat the food I have been smelling and craving and desiring for so long.

Right now I don't know what to do. This is causing such a shock to my system, to my way of life. I'm not sure what to do right now. What information I should trust. Do I start introducing gluten back into my life? Do I wait until more tests are run? It's all so exciting and intimidating. I don't know what I should do right now.

7 comments from people we love:

Ashley Knudson said...

That is so crazy Chrystal! I hope everything turns out okay. Didn't someone say that pregnancy can change the allergy?

Cherise Davies said...

Oh my goodness!!! How crazy and FRUSTRATING that must be! I have no idea what to tell you but I'm thinkin of you! keep us updated-that's crazy!

*~Randi~* said...

Wow thats nutz. One less thing to deal with

Jen-ben said...

what the freak!? how frustrating! Just goes to show you completely have to take your medical care into your own hands sometimes and demand answers. I hope you find out something GOOD!

Chrystal said...

Pregnancy can bring the Celiacs out (in other words-cause it)-but there is no cure for it and it doesn't go away. Once you have it, you have it.

Meredith said...

Crazy! I thought the same way when they told me my thyroid was fine after 3.5 years of thinking it was Hashimoto's! But hey, I think it's a good thing! You can be more normal now! :) Yay!

Mechelle said...

I am coming in late on this one. I just read the post above and now understand it so much better. I am glad you are eating bread again. I will make you a yummy loaf. M