My 10-year-old daughter was diagnosed with T1D in January and now she’s been diagnosed with celiac disease. She is so frustrated and we are very overwhelmed. I feel like we were just getting adjusted to T1D and now we are faced with another life-changing challenge. Any advice for kids with both T1D and Celiac?
Heather, our story is similar and we are about 3 years down the road from our daughter’s T1D diagnosis at age 6. Her Celiac diagnosis followed the T1D determination by about 4 months. It is overwhelming, and discouraging. In fact though, the carb counting and control do go hand in hand with the gluten avoidance, and I think you’ll settle in to the new lifestyle. For us, it was an easy decision to eliminate all gluten (and at the start, oats) from our home-we purged the kitchen of all suspect foods, tools, containers, etc. and started fresh. The real challenge is eating out, particularly while traveling. My wife works hard, and is creative at finding GF substitutes for the “goodies” that kids at this age want, and while it’s taken nearly two years to get the antibody scores down, we’ve shown good results. Be patient, and stay on the path and you’ll get there w/your daughter.
My 7-yr-old daughter has both (Celiac at age 5; T1D at age 6). We’re conscientious about staying GF, but she’s super-sensitive. Yes, cross-contamination is a real thing. I tell people to treat it like a germ: if it touches your hands, and you touch her food, or her hands, or anything that goes in her mouth (and of course she’s the sort who always has something in her mouth, whether it’s her fingernails or a necklace or a pencil eraser or whatever. We’re working on that!), she’ll get sick.
So despite our best efforts, she probably gets glutened a couple times a month or more. This last round is coinciding with some repeated lows at lunch. Obviously, we’ll lower her Humalog, but I’m wondering if she needs less insulin because she’s not absorbing the nutrients as well when she’s had inadvertent gluten exposure.
Anyone have experience, or aware of any research on point?
Thanks!
Susan
Hi all - we’re new to both these diagnoses - my 8 yo daughter was diagnosed with t1 at the end of September and we were told her numbers were very likely for Celiacs. She’s asymptomatic so we are just now doing the endoscopy to confirm. I’m very overwhelmed about this next stage. Did you all completely rid your house? How did that affect other kids? Her brother has been sidelined a lot in the last 3 months and I don’t want him to feel even more displaced, but I also see how it could be easier. TIA for your advice!!
We are also in the asymptomatic state. Our almost 8-year-old was diagnosed with T1D in August 2016, and was identified then also as likely for having Celiac. We did end up doing the endoscopy, which confirmed his diagnosis. At that time, we started to rid the house of gluten, but also have 2 other non-celiac children. We slowly eliminated gluten-containing food, but ended up leaving 2 cabinets (out of 8) as non-GF cabinets. We got a separate toaster for GF break so that our other kids could still toast bread, if they wanted.
That said, since our celiac child is asymptomatic, we don’t REALLY know if he ever gets “glutened”. So we don’t have much else to provide from our recent experience.
I also have a question for the dual diagnosis, however. We have unconfirmed news that a GF diet can create inulin resistance. Our doctors/nurses have said they believe the high GI food simply makes it hard to break down, so the insulin takes longer to impact his BG level. However, we have seen instances where we are just pumping him with insulin, and no result. Has anyone else found there to be a link to celiac and/or a GF diet in conjunction with T1D and insulin resistance?
Our ten year old has a similar story: T1D diagnosis at just shy of age 7; Celiac diagnosis 5 months later. We are a totally “clean” household, and found the switch to be easy once we made the leap. I don’t know of and have not experienced any insulin resistance associated with her Celiac, but do think many of the processed GF foods have high GI (though I’ve not empirically verified this) and find it ironic that eating GF makes it tougher to eat healthy foods in general and for T1D in particular. Yes, travelling and eating out is a challenge, and while our daughter is so far asymptomatic, I’m sure she’s been Glutened on several occasions. It took nearly 2.5 years for her antibody scores to come down to good levels: it takes patience and every day vigilance to get there.
We have a dual t1d/celiac household. It is so much easier to be gf than earlier. We were in Chico last week and this tiny hole in the wall grill had gf buns! We always travel with back up food in case gf options are limited. 10 years ago we had to cook everything ourselves, including making spaghetti sauce from scratch,but can now get even prepared foods labelled gf. Big challenge is Chinese restaurants, they almost never have gf soy sauce. Wheat is the second I gredient in most non gf soy sauce.