Isn’t Grace beautiful? I just can’t believe I have a daughter that truly isn’t a baby or toddler or preschooler anymore. She’s growing into a lovely young lady.
God has chosen her to carry the weight of a diabetes diagnosis since February 2009. And He might be giving her even more…but we will still ALWAYS praise Him!
I’ll stop being cryptic and just copy an email here that I sent to our families…
Since Grace’s Type 1 diabetes diagnosis in 2009, she has had bloodwork done annually. One of the numbers they test is TTG (Tissue Transglutaminase). It is the indicator for Celiac Disease, which is an autoimmune disease (as is diabetes). Since diagnosis, her TTG number has been high. You might remember that our endocrinologist (i.e. diabetes doc) was initially concerned about it and then not so concerned after a different type of test came back negative. Well, after the TTG levels have stayed consistently high over the last two (almost three) years, our endocrinologist has become more concerned. So, they contacted the Pediatric Gastroenterology office at DeVos. (Can I interject and say PRAISE THE LORD for our awesome medical people here in GR? Seriously, we are SO SO SO blessed to live here with such brilliant people and beautiful facilities.)
We had the gastroenterology appointment this morning [Dec.12], and I’m going to try to summarize what the doctor said.
Basically the only way to officially diagnose Celiac Disease is through a biopsy. So, on January 11, they will put Grace under sedation and put a scope down her throat to look at her stomach and part of her small intestine, and also to take a tiny piece of tissue to biopsy. The actual procedure will take about 15 minutes (though the whole ordeal will be longer with prep and recovery).
Here’s the thing, though. Celiac Disease is what he called a “patchy” disease. So, some parts of her intestines could be affected, while others could be unaffected. And he can only put the scope part of the way down her small intestine, so he can’t get a look at everything in there. So, the biopsy could come back negative right now, and we would monitor her TTG numbers with the endocrinologist, and come back for another scope/biopsy if or when symptoms occurred.
Let me interject here – Grace has no symptoms of this disease (diarrhea, stomach pain, rashes, etc, etc). The doctor said some kids present with no symptoms and high TTG levels, some present with no TTG levels and some symptoms, and some have both. Grace has the high TTG levels with no symptoms, which the doctor said is better for her.
If, however, the biopsy comes back positive for Celiac Disease, the only treatment is a gluten-free diet. That means no wheat, barley, or rye products. Grace is pretty bummed about this, since we really do love our breads, pastas, cakes, donuts, etc, etc, etc. BUT we can still have oats, rice, corn, fruits, veggies, meat, potatoes, etc, etc. Remember, this diet is IF her biopsy comes back positive.
The kicker is that the doctor pretty much made it sound like our girl is going to have Celiac Disease, if she doesn’t already. The TTG numbers are pretty good indicators of that. So, she might have it now, or she might have it down the road a little bit, but either way, it sounds like God is allowing more change in our lives.
But we will still ALWAYS praise Him for His amazing goodness and faithfulness to us. He surely would not allow Grace to have diabetes OR Celiac Disease if it wasn’t for His glory and good, and for Grace’s good, too. We are fully trusting in His provision and strength to adjust in whatever way we need to. He is the One who fearfully and wonderfully created our girl, and He’s the One who will sustain us.
So, I just wanted you all to know what’s going on with her. Prayers would be appreciated! We’ll keep you updated, but shouldn’t know of any results until 7-10 business days after her biopsy on January 11.
And just in case anyone feels bad for us amidst all the yummy treats this Christmas season…don’t! The doctor actually told us to load up on gluten products for now, in hopes of having a better chance of a positive biopsy (if there is something to be found).