Tuesday, October 28, 2008

Celiac Disease--An Anniversary

Ten years ago this month I was officially diagnosed with celiac disease (CD), an autoimmune disease in which ingestion of certain grains (principally wheat, rye and barley) causes damage to the lining (the celia) of the small intestine. The only treatment is a diet with NO traces of the offending grains, usually referred to as a gluten-free (or gf) diet. At the same time, I was also given an official diagnosis of MCS.

MCS and CD are both symptoms of an immune system gone awry. In my case, trying to determine which one came first is like asking the proverbial question of which came first, the chicken or the egg. I may have had symptoms of MCS before those of celiac, but years of undiagnosed celiac caused permanent damage to my adrenal glands, which in turn caused more chemical injury--or did the chemical injury cause some of the adrenal damage and thus aggravate the celiac? These are questions I quit asking long ago, because there were no clear answers, and knowing wouldn't change how things were anyway.

But, suffice it to say, finally getting a diagnosis of celiac disease and multiple chemical sensitivity ten years ago was a big milestone in my life. For one thing, I felt validated. I really was physically ill. I wasn't just making it all up in my head. Now I had medical records to prove that I had been telling the truth all along. I also had a plan for action. By changing my diet and lifestyle I could achieve a better quality of life. And I had justification for warning my family and friends (celiac disease has a genetic component). My story could be a cautionary tale for others.

I still have plenty of health challenges, but looking back I know I am better off now than I was ten years ago. I've backed up a few steps from death's door, and I know what I can and can't eat. But just to make sure I didn't forget how bad things were, I celebrated this anniversary this past weekend with a gluten reaction. Not on purpose, mind you. But somehow some gluten got into my diet by accident, and, well, I will spare you the details, but a gluten reaction is very similar to a severe case of food poisoning (it won't kill you, but you wish it would).

I'm on the mend today--still a little tired, but functioning--and thankful to know the cause. Life is unpredictable with any chronic illness. You never know what a new day will bring. Makes life exciting, doesn't it?


SharonB said...

I feel similiar on my anniversary in OA. I know it's not the same but learning what our bodies and minds can and cannot handle is liberating in a way. Love the post!

Anonymous said...

I know exactly what you mean about finally hearing the right diagnosis. I was so confused about what was happening to me before I was diagnosed with MCS. Once I had the diagnosis, I knew what I was dealing with and what I had to do to protect myself.

Thanks for this post, it reminded me about the importance of staying vigilant and informed and trusting what my body is telling me!

Hope you are feeling better.

PS Did you figure out how to activate the Name/URL identity for your commentors?

Becca said...

I'm glad that it's today and not ten years ago, as I remember you being so very sick. Now we can all breath a little easier (pardon the pun) knowing how to keep our mom alive and healthy. I'm trying to think if I have any sort of breakthrough anniversary---I guess it would have to be the anniversary of when I went to Spain (2003). I came back freed from so many obsessions and dark clouds I'd been hanging onto. I don't know if I ever fully thanked you guys for making that trip happen, but if I didn't, you should know that it made a world of difference in my life :).

CatherineWO said...

Thank you all for your comments. I think knowledge empowers us, even when the knowledge isn't always good news.

Susie...I think I fixed the problem so you can link your name to your URL. Thanks for reminding me.