New to type 1 diabetes and cruising questions

[KGmomoftwins]

DH was diagnosed 3 months ago with type 1 diabetes and to be honest it is still a shock and he is starting to feel a bit better although still a little sad as it has been extremely life altering. We have a double dip on the magic booked and tbh I’m not really sure we are going to keep it even though dh says we should. My biggest question is trip insurance how does that work with type 1 diabetes as it is a pre existing condition? Recommendations of trip insurance companies you have used if someone in your party has this would be helpful. Also any other tips about cruising with type 1 would be appreciated. we have fully gone keto and not being new to dcl I’m looking at menus seeing what he can eat and not coming up with much beyond meat and veggies. Thanks so much

 

[lanejudy]

Recently diagnosed Type 1 or Type 2? It's much more common for an adult to be diagnosed type 2, and diet is usually a big part of treatment for T2.

I assume he (and you) are getting familiar with portion sizes and estimating carbs. I recommend finding a good app that has the foods you typically eat. Onboard you'll need to guestimate as there won't be carb counts. If he is T1 and treating with insulin, the carb counts shouldn't be as big a deal because he'll dose based off his readings. Be aware that heat and humidity can impact glucose levels, as does physical activity. Bring along plenty of testing supplies and if you are out for an excursion be sure to test more frequently. Also carry glucose tabs or a quick-carb snack (make sure you have pre-packaged unopened snacks to toss in a bag).

Did you purchase trip insurance when you booked the cruise? You will want a policy that covers pre-existing conditions. If you don't have that, I suggest contacting the insurance and asking about it. It could be expensive to add now but you can do the math and decide the value. Depending on the lookback period of the insurance, they would want to see that he's been stable for a period of months (maybe 3 or 6, but it depends on the policy).

Did his endocrinologist suggest the keto diet? Neither of the endos (adult or pediatric) that my family members see would approve of it. So just being nosy.

 

[happycamper47]

I can't address the TI, but if you have not been on a DCL cruise before the Chef's are amazing when it comes to handling dietary issues.

 

[lanejudy]

I can't address the TI, but if you have not been on a DCL cruise before the Chef's are amazing when it comes to handling dietary issues.

Well... maybe they can help with portion sizes, or an extra serving of something as replacement for the starch. But we've never had particularly good luck with chefs or waitstaff understanding carb counts. Often, they'll refuse to serve anything for dessert except fruit, which just shows completely how little they understand.

 

[KGmomoftwins]

Recently diagnosed Type 1 or Type 2? It's much more common for an adult to be diagnosed type 2, and diet is usually a big part of treatment for T2.

I assume he (and you) are getting familiar with portion sizes and estimating carbs. I recommend finding a good app that has the foods you typically eat. Onboard you'll need to guestimate as there won't be carb counts. If he is T1 and treating with insulin, the carb counts shouldn't be as big a deal because he'll dose based off his readings. Be aware that heat and humidity can impact glucose levels, as does physical activity. Bring along plenty of testing supplies and if you are out for an excursion be sure to test more frequently. Also carry glucose tabs or a quick-carb snack (make sure you have pre-packaged unopened snacks to toss in a bag).

Did you purchase trip insurance when you booked the cruise? You will want a policy that covers pre-existing conditions. If you don't have that, I suggest contacting the insurance and asking about it. It could be expensive to add now but you can do the math and decide the value. Depending on the lookback period of the insurance, they would want to see that he's been stable for a period of months (maybe 3 or 6, but it depends on the policy).

Did his endocrinologist suggest the keto diet? Neither of the endos (adult or pediatric) that my family members see would approve of it. So just being nosy.

Yes very uncommon and a big misconception that adults can’t be diagnosed with type 1. Unfortunately no one knows for sure adults and kids what causes type 1 could be autoimmune could be brought on by a virus. Endocrinologist did not suggest keto but approved of his diet and obviously it’s working his a1c had gone from 12.9 to 7.1 on just under 3 months! No weight loss. We have just this week slowly introduce some carbs back in but he has not done well with small amounts.

 

[CTDisneygal]

Adult onset T1D is not unheard of, but it is far more common for a young person to be diagnosed, which is why it is so often referred to as Juvenile Diabetes. Some sort of virus/infection almost always serves as a catalyst prior to the onset of T1D.

Once the initial shock goes away, T1D isn't nearly as life altering as one may think. Especially if he uses a CGM and eventually a pump. Can't say much about the keto diet, as no doctors around us approve of it (specific to T1D. It is often part of the suggested ). It would definitely lower A1C as A1C is measuring average blood glucose levels over a specific time period and which is tied to carbohydrates. Anyhow, best of luck to him. Keto often helps people feel much better!

My son was diagnosed 12 years ago last week. While it did exclude him from his dream of being in the military, he was just hired by a local police department and begins the academy only a few short days after he graduates from college.

A T1D Dx no longer means one can't eat the food they want. It just requires one to bolus. It is a learning curve, but it becomes second nature to you after a while. That said, if you stay totally keto, the learning curve may be longer since you aren't eating carbs. The only foods his nutritionists ever restricted are soda and maple syrup and they only asked that if he was going to consume either that he opts for diet. We don't drink soda so it wasn't an issue

I'm curious what about the Dx makes you feel like you should cancel your cruise? If there is anything we've learned over the last 12 years, it is that one can not ever allow T1D to dictate one's life. Good luck! I hope he feels better quickly

 

[lanejudy]

Yes very uncommon and a big misconception that adults can’t be diagnosed with type 1.

My grandfather was diagnosed with "juvenile diabetes" when he was in his late 60s or early 70s. I only said it wasn't as common as an adult getting diagnosed with T2, plus the diet threw me off. The T1s that I know aren't using diet to help manage their diabetes, they use insulin; the T2s that I know are much more conscientious about carb intake.

I’m looking at menus seeing what he can eat and not coming up with much beyond meat and veggies

What does he eat at home? Have you tried eating out, and if so what worked best? Protein can be eggs, cheese/yogurt/dairy, nuts/seeds besides meats/fish. Some veggies can be higher in carbs than others, so you obviously are careful about that.

 

[KGmomoftwins]

Adult onset T1D is not unheard of, but it is far more common for a young person to be diagnosed, which is why it is so often referred to as Juvenile Diabetes. Some sort of virus/infection almost always serves as a catalyst prior to the onset of T1D.

Once the initial shock goes away, T1D isn't nearly as life altering as one may think. Especially if he uses a CGM and eventually a pump. Can't say much about the keto diet, as no doctors around us approve of it (specific to T1D. It is often part of the suggested ). It would definitely lower A1C as A1C is measuring average blood glucose levels over a specific time period and which is tied to carbohydrates. Anyhow, best of luck to him. Keto often helps people feel much better!

My son was diagnosed 12 years ago last week. While it did exclude him from his dream of being in the military, he was just hired by a local police department and begins the academy only a few short days after he graduates from college.

A T1D Dx no longer means one can't eat the food they want. It just requires one to bolus. It is a learning curve, but it becomes second nature to you after a while. That said, if you stay totally keto, the learning curve may be longer since you aren't eating carbs. The only foods his nutritionists ever restricted are soda and maple syrup and they only asked that if he was going to consume either that he opts for diet. We don't drink soda so it wasn't an issue

I'm curious what about the Dx makes you feel like you should cancel your cruise? If there is anything we've learned over the last 12 years, it is that one can not ever allow T1D to dictate one's life. Good luck! I hope he feels better quickly

Thanks for your insight. It’s hard for him right now he feels like he can’t enjoy things he used to eat and give a bolus. He has a cgm and pump is coming in 2 weeks. I think I’m just worried about something happening and not being able to get trip insurance. However, looking back at our Alaska cruise this summer he 100% had symptoms and we are so lucky he did not get sick then. We are so happy we went.

 

[auntlynne]

 

[auntlynne]

 

[KGmomoftwins]

My grandfather was diagnosed with "juvenile diabetes" when he was in his late 60s or early 70s. I only said it wasn't as common as an adult getting diagnosed with T2, plus the diet threw me off. The T1s that I know aren't using diet to help manage their diabetes, they use insulin; the T2s that I know are much more conscientious about carb intake.
Omelets, blueberries, strawberries, a special brand of yogurt called two good and the pepridge farm whole wheat thin sliced bread in the mornings, lots of nuts, salads with protein like chicken or shrimp for lunch, and dinner is protein and veggies. We have gone out to eat and 2 times he’s gotten things that have caused some spikes like a Cajun chicken salad that was probably dressing related.

What does he eat at home? Have you tried eating out, and if so what worked best? Protein can be eggs, cheese/yogurt/dairy, nuts/seeds besides meats/fish. Some veggies can be higher in carbs than others, so you obviously are careful about that.

 

[KGmomoftwins]

From an article on Nerd Wallet:

“To avoid being on the hook for medical bills abroad or losing a deposit before you even pack your bags, look for a policy that includes a pre-existing condition waiver. Read the fine print on the insurance provider’s website; there shouldn’t be an age limit on most plans, and the premium shouldn’t cost more than it would for people without pre-existing medical conditions.
As long as you’re medically fit to travel, you can qualify for a pre-existing condition waiver if you meet the following criteria and apply within the eligible timeframe:

• A pre-existing condition must be stable.
• You must buy coverage at the time of your first trip deposit or shortly thereafter (time frame varies by company).
• Amount of coverage must be equal to all pre-paid, non-refundable costs.

For example, if you put down a 50% deposit on a safari in South Africa, you must buy travel insurance within the time specified by the insurance provider to be eligible for a pre-existing medical conditions waiver. If you wait too long to purchase coverage, you'll have missed the coverage purchasing window and the waiver won’t be applicable to your trip.”

I’ve seen this information in other places, too. Timing is the key.

Thank you!

 

[CTDisneygal]

Thanks for your insight. It’s hard for him right now he feels like he can’t enjoy things he used to eat and give a bolus. He has a cgm and pump is coming in 2 weeks. I think I’m just worried about something happening and not being able to get trip insurance. However, looking back at our Alaska cruise this summer he 100% had symptoms and we are so lucky he did not get sick then. We are so happy we went.

Mine kiddo hadn't been sick since he was a year old. He'd never even been on antibiotics. His teacher got strep a couple of weeks before we went to Disney and he picked it up. we actually noticed his symptoms during our Disney trip. He had rapid onset and ended up very sick by the time we got home, but he still loves Disney!

I totally understand the feeling that life is completely different. And I know it is much harder for adults than children,. (Kids are inherently far more attuned to how they feel and learn very quickly what it feels like when their BG goes up or down). It's all sort of learn as you go. His BG isn't always going to be perfect. But the pump is very freeing. It makes it far more manageable. Which pump is he going on? If there's some time before your cruise, i wouldn't worry too much about it.

I remember when my kiddo went off to college. He was 17, we'd already moved across the country only a year before he went to college, and i was so panic stricken thinking something horrible would happen. When COVID hit, they kept warning how horrible it would be if he got sick. (He did end up getting COVID in January 2021 - on the very day he should have gotten the vaccine, but he was completely asymptomatic and never had any complications, thankfully.

The pumps are so similar to a pancreas, they are incredible. The advancements since my kid received his Dx 12 years ago are amazing. I know the worry about going on the cruise, but with a A1C of 7.1, it sounds like y'all are doing an incredible job already.

 

[disneyfaninaz]

My DD has had Type 1 since she was 9, and we cruised several times with her. We purchase Allianz Travel which includes Pre-existing conditions if you purchase it within 14 days of booking the cruise. Not sure how it works with a recent diagnosis. Fortunately, we never had to use the insurance.

Type 1, in my opinion, is easier to manage on a cruise than type 2 because you are not limited to what you can eat. You just have to count carbs and bolus for it (so much easier with a pump) Don't tell your serving staff that you are diabetic. Most of the time they don't understand and will push the no sugar foods on you. Also, nobody on board will give you carb counts for any food. You're on your own. We used to use a book called the Calorie King to help count carbs. (No need to get WiFI).

You want to make sure his insulin stays cool while traveling. Once on the cruise, the refrigerator works just fine. Sharps boxes are already in your stateroom and in all bathrooms onboard.

However he is getting his insulin, take twice as many supplies (insulin, insets, tapes, extra transmitters, etc.) that you think you'll need. Keep low snacks handy. Oh, and at the airport, if he is on a pump by then, his CGM and pump cannot go through the x-ray or scattergram machine. He will have to ask to go through the metal detector and have his spare CGM transmitters hand checked.

Type 1 never stopped my DD. She did Marching Band in high school, went away to College, traveled to Europe, went to Disney parks and cruises and is now working at Walt Disney World in the Disney College Program. We were very fortunate that our DD never had any extreme lows or highs since her diagnosis which required medical treatment or hospitalization.

Otherwise, relax and enjoy your cruise. You and your husband will get used to his new normal and it will become routine soon enough.

 

[KGmomoftwins]

My DD has had Type 1 since she was 9, and we cruised several times with her. We purchase Allianz Travel which includes Pre-existing conditions if you purchase it within 14 days of booking the cruise. Not sure how it works with a recent diagnosis. Fortunately, we never had to use the insurance.

Type 1, in my opinion, is easier to manage on a cruise than type 2 because you are not limited to what you can eat. You just have to count carbs and bolus for it (so much easier with a pump) Don't tell your serving staff that you are diabetic. Most of the time they don't understand and will push the no sugar foods on you. Also, nobody on board will give you carb counts for any food. You're on your own. We used to use a book called the Calorie King to help count carbs. (No need to get WiFI).

You want to make sure his insulin stays cool while traveling. Once on the cruise, the refrigerator works just fine. Sharps boxes are already in your stateroom and in all bathrooms onboard.

However he is getting his insulin, take twice as many supplies (insulin, insets, tapes, extra transmitters, etc.) that you think you'll need. Keep low snacks handy. Oh, and at the airport, if he is on a pump by then, his CGM and pump cannot go through the x-ray or scattergram machine. He will have to ask to go through the metal detector and have his spare CGM transmitters hand checked.

Type 1 never stopped my DD. She did Marching Band in high school, went away to College, traveled to Europe, went to Disney parks and cruises and is now working at Walt Disney World in the Disney College Program. We were very fortunate that our DD never had any extreme lows or highs since her diagnosis which required medical treatment or hospitalization.

Otherwise, relax and enjoy your cruise. You and your husband will get used to his new normal and it will become routine soon enough.

Thank you! So extra cgm should go in checked luggage? Super helpful info on airport. I’m worried because we booked in October (before all this) and final payment is looming so I will have to figure the insurance out. We’ve used Allianz in the past but luckily never filed a claim.

 

[enzy65]

My DH had to have his pancreas removed, so he then became type 1. Went to WDW in September, he was 5 months into this and did extremely well with eating and all the walking. Going on the WISH in April and I think he will do quite well. He can eat anything, just carb counts and injects insulin, also has a DEXCOM. Enjoy life and go on your cruise.

 

[enzy65]

At the airport we put all medical supplies in a carry on. The DEXCOM supplies we pull out to have hand checked, my husband does not go thru the scanner and gets patted down. Some say it is fine for all items to go through X-ray, just look in DEXCOM booklet and see what is says about going through security.

 

[enzy65]

Oh my mistake, he may not have DEXCOM and has another type of cgm. I’m sure some are different.

 

[notatallmagic]

Yes very uncommon and a big misconception that adults can’t be diagnosed with type 1. Unfortunately no one knows for sure adults and kids what causes type 1 could be autoimmune could be brought on by a virus. Endocrinologist did not suggest keto but approved of his diet and obviously it’s working his a1c had gone from 12.9 to 7.1 on just under 3 months! No weight loss. We have just this week slowly introduce some carbs back in but he has not done well with small amounts.

Parent of another T1; diagnosed at 17 with an A1C of almost 17. She's holding three years later around 6.9-7.0. It's quite a journey.

It's a HUGE misconception that only littles/mostly littles are diagnosed T1. We know of at least 5 other teenagers with diagnoses of T1 in the past couple of years; virus exposure suspected as the cause.

We've never been on a cruise, but travel frequently. There are so many factors that can impact blood sugar; food being only one. Sleep, stress, exercise, hormones, temperature...but when it comes to food - knowing carb counts and approximate carb counts is key; as are avoiding hidden sugar (think salad dressing and pasta/pizza sauce - full of sugar!) At this stage, I would recommend sticking to "clean" foods - things without sauces and lots of ingredients and/or talking with the chef to have them cook that way for your T1. And pack lots of low snacks - and have fun!

 

[notatallmagic]

Thank you! So extra cgm should go in checked luggage? Super helpful info on airport. I’m worried because we booked in October (before all this) and final payment is looming so I will have to figure the insurance out. We’ve used Allianz in the past but luckily never filed a claim.

My daughter always carries her supplies with her (never in checked bag) and takes lots of extra. We got TSA PreCheck to avoid any issues at security. She just can't go through the spinning detectors - the other kind are fine.