Healthy type 1 diabetic going on 33 years, recently diagnosed with celiac

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I’m Todd, happily married and father of 5 beautiful children, type 1 diabetic and recently diagnosed with celiac. The diabetes came in 1985 at age 7. I read some of the stories on here and how traumatic it was to get the diagnoses, I suppose I was young and naive enough that it just didn’t phase me much. Hearing from parents on this forum like Harold has made me appreciate what my parents must have been feeling! Apart from one incident in the first year, I’ve had no major incidents with my diabetes and feel it is just a part of my daily life. I don’t mean to minimize diabetes, but I approach it simply as an inconvenience rather than something that controls my life. I recognize this is because I’ve been blessed with good control and no complications yet (knock on wood!). I’d say I was caring for myself independent of my parents by about age 12 (although I appreciated their continued concern and reminders).

After 10 years on between 1-4 daily injections, I was put on my first insulin pump at age 18. The pump has been the greatest help in managing my diabetes. Now with the CGM added to that, I feel so grateful for the advancements that enable good control. My greatest frustration is that managing diabetes is not an exact science. Sometimes it behaves inexplicably and you just have to do the best you can.

I used Medtronic pumps for 20 years and tried their CGM several years ago. When I found the Dexcom CGM to be far superior (in my experience), I switched to the Animas pumps so the pump and CGM could be paired. With the recent announcement that Animas will no longer be producing pumps, I’d love input on what you all recommend as a replacement. To be honest, I was very happy with Medtronic pumps and customer support and haven’t loved the interface of the Animas pump. I’ve heard good things about the T-slim. But I digress, I’m sure there are some threads with these types of discussions.

After finding (and loving!) Dexcom (I use the G4), I created DexTape to help keep it adhered to my skin after trying several other products. I typically wear a sensor for three weeks to save cost and inconvenience of switching out sensors. My A1Cs are generally between 6.5 - 7.2, which I’m happy about but always looking to improve and appreciate the opportunity to learn from many of you!

Just this summer I was diagnosed with Celiac, so now I get to manage that too. I’ve had to adjust a few go-to’s for low blood sugars, but honestly, it hasn’t been too bad and for the most part the diet is actually helpful to controlling blood sugars.

For me, the pump, CGM, healthy diet habits, and regular exercise create the best formula for good management. I live an active lifestyle in spite of being diabetic and celiac. I appreciate all of you who give time and effort to educate, support, and discuss the issues we face as diabetics and family members!

Todd

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Welcome @toddex !!! Thanks for sharing your story. Your plan and formula seems very solid. Look forward to reading your contributions to the forum!!!

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@toddex, what a great story! Really inspiring to all of our kids – I love your make-do tone and your will to be #unlimited.

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With rest to your question about your replacement for animus pump, if you like your Dexcom CGM you could consider the omnipod tubeless pump because they will be releasing a hybrid closed loop system with the Dexcom in the next 12 to 24 months, so you would be in a good position to use that. I think there is also a traditional pump with tubing that is working on a hybrid system but I don’t recall which one. My 13 year old son has an omnipod and we love it, but everybody is different. Our endo also tells us that she expects fully closed loop pumps ie not having to do meal boluses within 2 to 5 years so at that point we may all be learning new systems.

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Did your endo give you some insight on how that would be done?

I could see how a pump could do basal adjustments for people based on their CGM, but if you don’t enter your carb count, the pump would be playing catch-up on your BG depending on whether you ate a little or a lot.

I am curious how they would do something like that.

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I think it’ll require advances in insulin technology. There’s only so far we can go with insulins that take a half hour to start working and getting their input from a cgm that’s an additional 20 minutes behind real time. I think we’ve about reached the technological limits in terms of how to deliver the insulins that currently exist… unless new ways to administer them are invented or approved… the wheels of diabetes and insulin technology turn very slowly

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So the systems that are currently available and coming soon, the hybrid systems, still rely on the user to bolus for carbs and approve correction boluses. My Endo is actually not a fan of the current Medtronic hybrid closed loop system, she says it is very prone to falling out of closed-loop mode and the CGM is not very good. She thinks the Dexcom omnipod hybrid system coming in 2019 will be better. But you’re right a true closed loop system would not require user input for boluses. The one furthest along in development asks the user to indicate a low carb, moderate carb or a high-carb meal and apparently learns over time what that looks like for the user, so that it can modulate insulin more precisely, but doesn’t actually require a carb count. But she made the same comment you are making that a really good closed loop system will require more rapid insulin action. There are a couple of insulins in development with 2-3 minute onset, but then of course the new insulin/new device combo might have to go back thru FDA process. I’m hoping for some closed loop option by the time college comes for us in 5 years :astonished:

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I heard about one in India that was supposedly very fast (Linjeta), but it got shut down pretty quick. No progress with that one.

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SO exciting to see advances in insulin therapy. I talked to a diabetic with the Medtronic hybrid closed loop and he had mixed reviews. The biggest plus, in his opinion, was preventing night-time lows because it would automatically cut back the basal rate and prevent the low. But he found it was not so effective at preventing highs for some reason. I would think Medtronic had to be cautious there to prevent overdosing. A quicker insulin would be fantastic. The only way I know to get quick reaction time now is to inject directly into a vein. Doctors will warn you never to do this, but I occasionally do when it’s high and won’t come down. It’s amazing how fast it drops when injected directly into the bloodstream.

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Dude!

Finally I have some company in the IV club. I do this a lot too.

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