Genetics: Type 1 diabetes and celiac, TrialNet?

[Anonymous]

My husband has type 1 diabetes and celiac and we've talked to a genetics counselor, his doctor, his diabetes doctor, the doctor the diabetes doctor referred him to, my gyno and doctor, the head of endocrine genomics at a university, and a medical professor.

-Is there any way to decrease the odds of our future child getting Type 1 diabetes? (We heard a pregnancy gluten-free diet decreases the likelihood, weren't sure, no concrete answers).
-Given my husband's medical history, should we put our future child on a low/no gluten diet?
-We heard of TrialNet (which monitors kids of T1 diabetics for their likelihood of T1 themselves, via tracking presence of antibodies over time). The closest TrialNet location is NYC but we live in the DC area.
-We heard rotavirus vaccines decrease the likelihood by 33% of T1D. How do we find a doctor who administers this?

Basically, I want to not feel like a sitting duck, waiting for scary things to happen--we want to take charge of our future kids' health, if only we could find folks on the same page in the DMV area.

Any advice? re: above questions?

[Anonymous]

You spin the wheel, you take your chances. Like the rest of us.

I know some diabetics have decided not to have children, just in case. I know others who have decided to have children. Including me. One thing I've learned about my health and that of my children is that you do the best you can do and let go of control of the future. Taking charge of the future instead of waiting around for scary things to happen, that's anxiety speaking. And it's well beyond our current level of medical knowledge.

Rotavirus is part of the regular vaccine schedule and any pediatrician or clinic will give it.

https://www.cdc.gov/vaccines/schedules/easy-to-read/child-easyread.html

[Anonymous]

My sibling has t1d, and they decided not to have kids because they don’t want to pass it along.

[Anonymous]

How is your husband's health and quality of life? Take heart in the fact that your child will have access to more advanced therapies than he had and may have an easier and earlier diagnosis since you know to look out for these potential issues.

There is a complex genetic/environmental interaction for both of these conditions. The experts you've already talked to can give the best advice. What do they say about a gluten free pregnancy? I've read some stuff that suggests avoiding gluten increases risk of celiac (similar maybe to avoiding peanuts increases risk of peanut allergy) but I don't know that this is the current consensus.

[Anonymous]

How would a gluten-free diet lower one's chances of getting T1D? It's genetic.

[Anonymous]

Anonymous wrote:How would a gluten-free diet lower one's chances of getting T1D? It's genetic.

OP mentioned that because her husband has celiac, another autoimmune disease. There is a genetic component to T1D but other things at play as well.

[Anonymous]

How would a gluten-free diet lower one's chances of getting T1D? It's genetic.

[Anonymous]

Rotavirus vaccine is part of the standard set of vaccines your child will receive from any pediatrician, so don't worry about that one.

Can you and your husband meet with his endocrinologist or with a pediatric endocrinologist to discuss some of your concerns? Monitoring for antibodies seems like it could give you piece of mind, although I imagine getting insurance to pay for it could be tricky.

Given the history of celiac, I would consider the gluten-free diet, but only after speaking with a doctor. It seems like scientists are still trying to figure out if there are cases where avoiding substances may actually lead to greater sensitivity later on, so I'd really want to talk to a medical professional before going down that road.

[Anonymous]

It looks like TrialNet can be done at home for a one time test for antibodies.

[Anonymous]

Anonymous wrote:
How would a gluten-free diet lower one's chances of getting T1D? It's genetic.



OP mentioned that because her husband has celiac, another autoimmune disease. There is a genetic component to T1D but other things at play as well.

Not true. It clearly says something about a gluten-free diet during pregnancy to allegedly ward off T1D.

[Anonymous]

What is the data on rotavirus vaccine and T1D?

[Anonymous]

Anonymous wrote:

Anonymous wrote:
How would a gluten-free diet lower one's chances of getting T1D? It's genetic.



OP mentioned that because her husband has celiac, another autoimmune disease. There is a genetic component to T1D but other things at play as well.

Not true. It clearly says something about a gluten-free diet during pregnancy to allegedly ward off T1D.

NP. I think the implication is that it is because of the celiac connection in this family. Otherwise, it does sound bonkers, but there’s no point in just ignoring that her husband also has celiac.

[Anonymous]

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.

[Anonymous]

Gluten free person here.

It would not hurt Mom to go low gluten during pregnancy just
for the fact that it is a low inflammation diet.

I'd recommend any child of a celiac go low gluten after birth.

My Mom is celiac. I am not diagnosed as such yet but have been 100% GF for 10 years due to an inflammatory bowel disease so that I stay on remission without meds.

Have you read the Bernstein books for Type I diabetes?
He is really cutting edge.

I've been gluten free for 10 years and honestly that is no big deal. I'm age 59 and think I'm healthier than my friends of same age now.

[Anonymous]

I'm 17:34 poster here.

I've been gluten free for 10 years. My boyfriend who lives with me is very low gluten as he eats what I eat in the household.

In many ways it is easier to make the whole household gluten free and my boyfriend does eat gluten when he is out of the house.