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:

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!


Adriane and Bryan said...

I'm so sorry to hear that news! Like you said, though...at least you caught it early before things potentially got worse.

Here's something I learned the other day from a friend who has a 2 year old with Celiac disease...use Crayola paint for the kiddos to play with rather than other paint...most paints use flour as thickening agents, but Crayola doesn't. Just a little tip from her to me to you if you didn't already know!

Shanan said...

I'm so sorry! Boy Shannon is a GI physician so we hear lots of stories. My friend has it & has an incredible cookbook....you won't believe it's gluten-free. It's on amazon. Good luck girl.

Sally said...

i love it!!!
CELIAC SUCKS!!!!!!!!!!

ok, i feel better.

love you guys!!