Tuesday, June 1, 2010

Family results

We finally have the results for our entire family. There are two genes tested: DQ2 & DQ8.
What is the meaning of HLA DQ2/DQ8? As an autoimmune disease, Celiac Disease is the consequence of the interplay between genes and the environment (gluten). We don’t know all the necessary genes to develop CD; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease. Since 1/3 of the general population also have these genes, the presence of DQ2 or DQ8 does not imply that the person will develop CD, rather, that they have a genetic compatibility with CD. Conversely, the absence of DQ2/DQ8 almost certainly rules out CD.

That being said, here are our results:
*Carson tested positive for DQ2
*Alex tested positive for DQ8
*Nathan tested positive for DQ2 & DQ8
*Mel tested negative

As you read previously, it doesn't mean that any of the three will absolutely have CD, it just means that the genes are there that cause it. It's our job to eliminate the "environmental factors" so the disease is not triggered.

Our doctor believes that Nathan's type 1 diabetes is a results of repetitive exposure to gluten. I tend to agree with him. The true blessing is having this knowledge now so we can hopefully prevent these types of complications in the future for our children.

Here I have been thinking all along that I have done so well with Carson's diet. Just today, I learned that hot dogs contain gluten (a food he ate for 6 months on a daily basis) and his current staple, Sprouts rotisserie chicken, uses flour in the skin and spices that contain gluten. Ahh! Clearly, I have a lot to learn.

Thank goodness, I have access to amazing resources. I am meeting with a nutritionist and she's given me a recommended meal plan for the family. Yesterday, we met at Whole Foods and did a store tour together. Next week, we are taking a hands-on cooking class with Dr. Claudia Pillow. I am looking forward to Nathan being a part of the cooking class and learning with me. He's had such an incredible attitude and is "all in." That really helps! We are going to be spending a lot of time in the kitchen together, and we are excited to learn. It helps when you have an amazing spouse :)

Last night, we explained everything to Alex. We used puppets and a lot of humor to explain how and why we can't eat wheat. She absolutely understands and seems to be on board! We are on day 3 of GF in our house! Here's to being on the road to recovery (I hope!)

Thursday, May 27, 2010

Alumni Stunt Fest

Last weekend, a group of 6 Baylor alumni cheer got together for a stunt day. Let's just say me & Rachel got a serious workout. It took me a solid 3 days to start walking normally again...and I'm not joking! It was worth every ache!

Ronnie, David and Adam were amazing. Anything and everything we wanted to try, they could do. I did things I thought I would never do again, and even tried some new tricks. At the end of the day, at 31, it just feels great to know I can still do this. The guys really pushed us out of our comfort zone and that was welcomed.

Partner-stunting is one of the best things I've ever done. It's a blast. Not too often does one get to fly. We all kept laughing at each other b/c we were all "perma-grin"-- we all felt young and giddy. It was a perfect day.
We took the party to La Fiesta afterwards to recover and visit and catch up on life. Here are a few pics. We took a ton more, but here are a few of my faves:

540
Toss-scorp with Ronnie
HAHA! Has to be my favorite pic. It looks like I can grab the rafters. The jazz hands are equally entertaining. I couldn't believe we threw baskets!
No, this is not photo shop. One man has two girls over his head. Amazing, huh? Stud!
Awesome with Adam. We were partners for 2 seasons.
Video with David Prado. He's a rock star!
Thanks for the incredible day, guys! You were all amazing!

Tuesday, May 25, 2010

Celiac Sucks!

I couldn't find a more appropriate title for this blog post, so there you have it. We got Alex's test results back and she tested positive for the DQ2 gene as well.

What does that mean?
It means that both of our children are allergic to gluten (wheat, rye, oats & barley). Unfortunately, they do not have a cure and it does not go away. I have had several people ask about the difference between having the gene and having the disease. This is how my physician explained it to me: If you carry the gene, assume you have the disease. Many doctors wait until there is a symptom (i.e. diabetes, cancer, rheumatoid arthritis) to diagnose the disease. My doc said it's just a matter of time. The more wheat they consume, the more complications they will have. So, why on Earth would I continue to feed them wheat?
I agree with our doc! I do believe Carson already has the disease. I have seen symptoms with Alex (hand tremors, rash on cheeks, concentration issues) and I certainly don't want to wait until one of them are diagnosed with Type 1 Diabetes to do something about it. So, as far as we are concerned they both have Celiac disease. It seems pointless to me to "wait and see" what happens.

Nathan & I are awaiting our results, but one or both of us will also have Celiac. It is highly genetic. I won't be surprised if we both do.

I am so thankful we have answers! I am overwhelmed and of course sad to know that both of my "perfect babies" have a disease that will change their lives forever. Now we understand what Nathan's parents went through when he was diagnosed with Type 1 (obviously on a much smaller scale). I wish I could take it away :( But, I can help! We will be come a "GF" (Gluten Free) household as soon as I meet with the nutritionist and get a plan.

The good news:
1. We are going to be crazy healthy eaters. There's the silver lining.
2. We caught this early (it takes the majority of Celiac patients 11-20 years to diagnose)
3. We have time on our side...they are young and hopefully we can prevent the additional diseases by eliminating the gluten.

Here is a great article that explains the gene & disease difference:
http://www.celiac.com/articles/21521/1/How-Early-Can-Celiac-Disease-Be-Diagnosed/Page1.html

I am learning so much through this process. I believe we will find other family members that have the disease and I hope and pray it can help. Please pray for patience, understanding and great resources. This will be quite a new life for us, but I am ready! Love you all!

Friday, May 21, 2010

Happy Birthday, Brigitte

We celebrated Brigitte's birthday at Sambuca 360 last Friday and had a blast. Here are a few pics. We took all kinds of "action" shots which I will spare you from....mostly ;)

Mel with the bday girl

This is our "surprised" face.
This is our "danger" photo. HA!!!
Okay, just be normal

Love you Brigitte and Britnie!

Thursday, May 20, 2010

Taylor's Gift

Here is the latest interview from the Storch family regarding Taylor's death and how they are turning tradgey into triumph:

http://www.wfaa.com/news/local/Taylors-Gift-New-Foundation-Promotes-Organ-Donation-94360814.html

We love you guys and thank you for bringing awareness to the world about the importance of organ donation.

Wednesday, May 19, 2010

Working Woman

I think it's incredible when an unexpected blessing just falls in your lap out of nowhere. With all that has been happening with Carson, I have been very focused on research for Celiac and working with the therapists to get him on track. Let's just say I certainly haven't been looking for a job.

But, a friend and ex-coworker of mine from Belo called last week and told me about a contractor position for his current employer, Ciena. At first I was very hesitant. I've been approached in the past for various types of work and it just wasn't on the radar AT ALL. As we started talking more about what the job entails, it was truly perfect. In fact it was better than I would have even imagined. If you had asked me to put the ideal job on paper, it would be this!

After a phone interview and a follow-up discussion this week, I was offered the job. I can't believe it! I will be assisting with e-mail campaigns and landing pages. It's a marketing position, but I get to work 100% of the time from home. The hours are extremely flexible and the pay is truly going to bless our family in ways I couldn't have dreamed. I am just blown away. It looks like I will typically work a 10-15 hour week, but that will vary.

I am excited to be back in the game doing what I went to school for, but still putting my family first. That is my dream, and in all reality, at home marketing jobs are very rare. I will start around June 15th and I'm working on getting help with the kids this summer while I get acquainted with the position. The kids won't be in school this summer, so it will be awesome to have help here at the house. Ahh! This is too good to be true. I am anxious and a little nervous to get started, but mostly amazed and feel incredibly blessed. I'll keep you posted. Wow, huh?

Pre K Graduate (Part 2)

For some reason, the blog wouldn't post this correctly, so I had to make two entries.

Look, Nathan shaved his goatee.
Alex loving the petting zoo

YaYa and my Aunt Cindy (I LOVE these women)

One quick funny from our evening...when Alex finally got her turn with the pink horse, she asked a hilarious question. "Umm, is this a GIRL horse? Because that sure looks like a boy." Yep, that was a male horse, no doubt! We were all cracking up. How did she know that? We are in so much trouble. Congrats, Alex Elizabeth Darby!