Hello everyone. My 3 yo daugther was diagnosed 4 months ago with T1D and this new life style has been the most dificult change ever. Now two weeks ago her ciliac test came back possitive (gluten free diet), and she needs to be followed by a gastro. Has anyone have the same issue? Plus; not gaining any weight i guess do to ciliac problem. What can I do for her to gain WT?How are your kids managing T1D?
Correction: ciliac disease
My guess is that Facebook groups might end up being a good starting place for you, but I don’t have much guidance to give you. I did contact one woman on Facebook whose daughter is Type 1 with celiac disease, but her daughter is a pre-teen or maybe even a teenager by now. She doesn’t blog a lot these days, but the archives of her blog might help.
Hopefully someone will read my post on Facebook and reach out to help. Since it’s the weekend, it might take a couple of days. You can also just do a search on Facebook using the terms Type 1 diabetes and celiac disease.
You definitely have a lot of learn, but you will learn and your daughter will be fine. Celiac is unfortunately a common companion to Type 1. Not an easy road, but it is doable.
your daughter is going to be fine and will put on weight now that the dx of gluten is made
my sister is celiac and is in her 50’s and good health. home cooking is better, production and some small resturaunt food can be a challenge
I have the gene for both also and have been gluten free for 20 years. It’s tough at first although these days much easier to find gluten free carbs. Make sure she gets lots of good fats and protein, the rice carbs are obviously more apt to spike blood glucose but there are some breads that use other flours like almond, that are okay. It takes time to feel better and gain back weight but it should happen if you are vigilant and avoid glutens. Be careful with dairy, many gluten intolerant people are also dairy intolerant so if you use a lot dairy to help her gain back weight and she has tummy issues cut back.
I have celiac disease.
Have her continue to consume gluten daily until you meet with the GI and schedule the endoscopy. This is very important or test results will be negative! In the meantime, learn all that you can about being gluten free. The University of Chicago’s celiac website is very informative. Research to learn about celiac disease and to insure your GI is celiac savvy. Get other family members tested even if they are symptom free.
A whole foods diet is best when first starting out (after GI okay). Damaged intestinal villi are not able to release enzymes need to digest foods like lactose (milk) or absorb iron. This is usually just temporary until healing begins. Talk to your doctor about checking for vitamin or mineral deficiencies.
She will be fine! It is a lot to take in, but you can do it!
My daughter was diagnosed with celiac at age 3. She screened positive for the bloodwork and we followed up with gastro and had an endoscopy to confirm her celiac. Two years later, her brother was diagnosed at age 3 as well.
The weight loss will resolve in a few weeks to months once her system has recovered from the malabsorption caused by the celiac. The hardest part about maintaining a gluten free environment for little celiacs, in my experience, is the food PREP more than the food. New toasters, new pots and pans, no shared cutting boards, etc. We’ve managed to do a split kitchen, with certain implements only for the kids’ food prep, but it’s very very hard. One of my girlfriends from grade school is a gluten free food blogger and sent me this link when my daughter was diagnosed: How To Go Gluten-Free: Avoiding Cross-Contamination At Home
Eating out can also be challenging. We do a lot of fruit and milk when we’re out, especially on vacations, but we’ve found the places where my picky kids (now 6 and 4) can get safe french fries, bunless hot dogs and burgers, etc. Grocery stores have AMAZING varieties of gluten free foods now though. I buy a lot from Amazon, too.
1 in 10 Type 1s have Celiac as well. You are NOT alone.