Genetics: Type 1 diabetes and celiac, TrialNet?

[Anonymous]

OP, I'd see if you can email your question about preventing Type I diabetes to Dr. Bernstein.

[Anonymous]

Anonymous wrote:OP, I'd see if you can email your question about preventing Type I diabetes to Dr. Bernstein.

Dr. Bernstein is an excellent advocate for diabetic health but he thinks that thyroid dysfunction is just part of the deal, when it doesn't have to be.

[Anonymous]

Anonymous wrote:This is totally anecdotal but my BIL has Type I and both their kids got it and one got Celiac as well. My sister is having a rough time of it. Their lives revolve around food and sugar and 504 plans. She can't leave them with a babysitter for any length of time; they can't go to camp (except diabetes camp). It's not an easy life.

Thanks for this perspective. OP here. It's the daunting reality I could end up facing. Though, I'm curious as to likelihood of people with Asian ancestry having T1 diabetes (I'm part Asian). Asians according to medical literature have one of the lowest incidences of T1D. Were both sides of BIL/your sister's family the same ethnicity? (You don't have to answer that if you don't want to).

My main fears: that my math skills are so horrendous I can't calculate blood sugar, and that T1D would bankrupt the family and create enough marital stress to cause divorce (I've known people to whom that's happened).

Our steps going forward:
1. Hubs gets carrier testing done
His family: celiac; Hashimoto's thyroid disorder; him: T1d/celiac
My family: Hashimoto's thyroid disorder
2. Adopt a low/no gluten diet during pregnancy (I found some really delicious GF crackers that are a viable saltines substitute)
3. We register future kid(s) for TrialNet online (earliest age they take is 2.5 yo for T1D antibody screening)

[Anonymous]

What happens if you do everything you can and your child develops either condition (or a completely different chronic disease)? It's very easy to think you can avoid something just because you do everything right, but things will go wrong, things you can see coming and things you can't. You should identify resources now that you can go to later if needed (support groups, couples therapy, individual therapy, spiritual advisers).

[Anonymous]

Type 1 Diabetics have 10x higher rate of celiac.

[Anonymous]

Anonymous wrote:

Anonymous wrote:This is totally anecdotal but my BIL has Type I and both their kids got it and one got Celiac as well. My sister is having a rough time of it. Their lives revolve around food and sugar and 504 plans. She can't leave them with a babysitter for any length of time; they can't go to camp (except diabetes camp). It's not an easy life.

Thanks for this perspective. OP here. It's the daunting reality I could end up facing. Though, I'm curious as to likelihood of people with Asian ancestry having T1 diabetes (I'm part Asian). Asians according to medical literature have one of the lowest incidences of T1D. Were both sides of BIL/your sister's family the same ethnicity? (You don't have to answer that if you don't want to).

My main fears: that my math skills are so horrendous I can't calculate blood sugar, and that T1D would bankrupt the family and create enough marital stress to cause divorce (I've known people to whom that's happened).

Our steps going forward:
1. Hubs gets carrier testing done
His family: celiac; Hashimoto's thyroid disorder; him: T1d/celiac
My family: Hashimoto's thyroid disorder
2. Adopt a low/no gluten diet during pregnancy (I found some really delicious GF crackers that are a viable saltines substitute)
3. We register future kid(s) for TrialNet online (earliest age they take is 2.5 yo for T1D antibody screening)

We are Caucasian. My sister’s math skills were terrible. The calculator comes out after every meal. She is always counting carbs or testing levels. The kids have ports for the insulin and monitors that go off in the night. The kid with celiac has worse health than his brother overall.

[Anonymous]

Curious what all the medical experts you talked to told you in terms of what the risk is?

[Anonymous]

Anonymous wrote:What happens if you do everything you can and your child develops either condition (or a completely different chronic disease)? It's very easy to think you can avoid something just because you do everything right, but things will go wrong, things you can see coming and things you can't. You should identify resources now that you can go to later if needed (support groups, couples therapy, individual therapy, spiritual advisers).

Then, even if I do everything and T1D happens, I can look my kid in the eye with a clear conscience and say we did everything within our power to make sure you’d be cared for health-wise. I know myself really well, and if I didn’t at least go low/no gluten I’d question the what-ifs and be burdened with those what-ifs for the rest of my life.

The medical professionals haven’t been able to quantify risk at all and say it’s all autoimmune and unpredictable. Um, 3 people with celiac, 1 with T1D is not. They told hubs to get carrier screening. And said kids might or might not have it. Medical journal articles suggest Asians have a far lower prevalence, and we’re already gluten free already (ie. Dinner: rice, veggies, baked chicken).

We did reach out to 2 diabetes doctors, 1 university diabetes head, 1 celiac specialist, plus 2 doctors and 1 gyno.