My 10 y/o daughter was diagnosed with T1D on 1/27/16 and now she has also been diagnosed with celiac. I feel like we’ve just started adjusting to T1D and now we have another major adjustment…we’re so overwhelmed. Any advice would be so very much appreciated. Helpful books, blogs, websites?
hello @HeatherK, sorry to hear about your daughters recent diagnosis. Yes this year will be chaotic for you and your family. In my opinion, your best ally will be a CDE (certified diabetes educator) that can work closely with you. CDE usually set up a meal plan, and with Celiac, her meal plan will include counting carbohydrates AND avoiding gluten (wheat, & derivatives).
There is a ton of information about Celiac, but please do not get overwhelmed or even side-tracked…(unfortunately, the internet is full of snake oil) essentially Celiac is an autoimmune response to wheat gluten, and T1D is an autoimmune response to pancreas beta cells. I do hope you have access to medical care and support. Also please check out the local JDRF chapter. The tab at the top of this website called “Resources” will have some additional help for you.
You are a lot stronger than you think you are, and you can do it.
Please also get a referral to a registered dietitian from your endo. As you know, there are now some things she should not eat, but it can be frustrating to figure out what she CAN eat, especially in situations like parties or eating out. An RD can help you with ideas of what to incorporate into her meals and some fun things to seek out. And as Joe says, there is a lot of misinformation out there regarding what is truly “gluten-free” due to the gluten fad. Check out these links if you haven’t already:
My daughter was diagnosed with celiac at age 5, and T1D at 6. She’s 7 now, and it sounds Pollyanna, I know, but the truth is that I am grateful every day. Both diagnoses stink, for sure – no one would ask for either one of these – but with practice, you and she will learn how to manage them.
If you just want to talk, I’m always happy to chat, and this board is terrific: so many great, generous, and experienced voices!
Hang in there, and post back with anything you need. We’re here for you.
I should add that cross-contamination is a real thing. Think of gluten as a germ: if you hand your non-celiac son a cracker and then hand your celiac daughter a strawberry without washing your hands in between, then your daughter will have symptoms later, as I learned from personal experience.
My husband also has celiac, so it was an easy decision for us to make our home completely gluten-free (which includes buying a new toaster, collendar, and anything else that never gets truly clean; chucking the peanut butter jar that has had a knife touch bread and then go back in the jar, etc.). I can’t imagine trying to keep gluten and GF stuff separate in one kitchen. We pack food for her to take to birthday parties; we’ve educated countless teachers and coaches and sitters about both diagnoses; and it can be a challenge to teach loving friends and family about what is involved.
But the bottom line is the same as I wrote above: you and she will handle it all just fine, and we’re all here to help if you ever need it.