Wednesday, November 4, 2009

Gluten-Free For Good

So, it's official (yet again)...I have Celiac Disease and will remain on my gluten-free diet forever. I just went in for a follow-up with my doctor yesterday and went over the results of the blood test and the endoscopy. She thinks the reason the blood test came back negative is because my levels of the antibodies it tests were very close to the normal range. The endoscopy however did show that I still have it, although she said the damage wasn't terrible. When the nurse told me things looked good, they meant no signs of cancer, which is of course good news. I will be having one more test done to make sure there are no tumors (lymphoma of the small bowel is a main concern that she wants to screen me for) and then I will be meeting with a dietitian for a refresher course of my diet. My mom did an amazing job of teaching me to follow my diet as a child, especially considering being diagnosed was so rare then, but it will be good to have a professional address me personally about it all. The website I linked to at the beginning of the post has great information about Celiac if you are curious (the genetics of it, the testing for it, etc), but I thought this would particularly interesting for everyone (I had lots of questions regarding whether it could go away):

I was diagnosed 15 years ago and have never received follow up testing. Why should I start now?
It's never too late to begin follow up testing and to learn from the results. Food manufacturing practices change often, and even the most diligent celiac cannot keep up with all the changes. In addition, some celiacs find that current health problems may be related to celiac disease, such as anemia or bone density. The reverse is also true-some find that current health problems they've attributed to celiac disease aren't related, because their antibody levels indicate that celiac disease isn't active. In either case, the patient and physician have received valuable information.
While follow-up testing is especially important for people in the first five years after diagnosis (this is when the most serious complications of celiac disease can occur) testing can help all celiacs know that they are doing well with the diet or need to make changes to protect their health.

So, I'm going to be more strict about following my diet (no more bites of cookies, etc) and every few years will go in to have everything checked out again. I'm all for being cautious!
So, that's the update on me :-). I'll try and post some pictures later tonight.
(and also, when I asked her about getting the girls tested she suggested waiting until they get a little older, unless of course they start to exhibit symptoms. she told me to let their pediatrician know though so she will be more aware of any changes in weight gain, etc.)

9 comments:

Annemarie said...

I remember making you pb&j on rice cakes when I babysat you.

Like you said, at least you know how to do it. I think this is all so interesting and pretty cool that you will meet with a dietitian.

Kendall and Lee'sa said...

I bet that wasn't a pleasant experience! I'm glad you're OK. It's been interesting reading your recipes and learning more about this. No cookies is probably why you always look so great!

Katie B said...

non-congratulations? I guess it's good that you know for sure. I remember feeling so bad for you when we'd have a treat at mutual that you couldn't have. But I bet your diet's 10x healthier than mine!

Diane said...

Thanks for the update. I will try to more careful with our cooking when you guys visit....no whites. Did you hear that Mike? no whites!

...we'll see how well that works :)

Christina Bambina said...

I remember eating peanut butter and jelly rice cakes with you too! And I remember that in sacrament meeting there was always a piece of rice cake for you when the would pass the sacrament.

I'm glad you are ok though all together!

Kayley said...

I'm glad everything looked good- and cookies are bad for you anyways! :) I just realized I never gave you that check while we were there.

Heather said...

The great thing is that you are so much more aware of the bad food and are eating a lot healthier than most!
You also have a great attitude about the disease and it is always so much better to know exactly what you re dealing with than to not be diagnosed correctly!

KelleyAnne said...

What Heather said is so true. When I started reading all the labels I became much more conscious of EVERYTHING that is added to prepared foods!

Stephanie said...

I had never heard of this when I met you, I wish you had different news kind of, but it seems like a healthy way to eat. You are such a good mom and great at cooking for your family. Good luck with keeping up the great job you already do!