So I joined this forum as a spouse of someone diagnosed with T1D after an injury to the pancreas. He’s not LADA or “traditional” T1D He is that small percentage of people who have been diagnosed because of injury to the pancreas. He is doing very well so far in keeping his A1c at a great level (5.7 at his last appt. 13.2 at diagnosis) however, we are finding the lifestyle changes required as a T1D to be difficult to stick to. Does anyone have suggestions or ideas on how to flip your whole food world, and live a life that brings health and longevity?
I found the trick to keeping a healthy BG level is all in the dosing. I have a pump and a CGM that have been invaluable. I eat whatever I want ( I am a strict vegan) if I want a cookie, I have a cookie. But I eat whole wheat breads, pasta etc. Lots of fruits and vegetables.
Prebolusing is the key for me. Generally if my meal is 45 carbs, I will prebolus half of it a half hour before I eat and the other half when I eat. I will stay under 140 and lower if I bolus like this. The other thing I do and it’s easier because I am retired is I don’t eat when my sugars are higher than I like. I wait until they come down to a better level, that usually means under 110.
With a CGM and a pump, it allows me to make adjustments all day as needed and prebolusing helps me stay at more “normal” BG levels. My A1C was 6% last test.
He started using a CGM about 2 weeks ago and that has been a major blessing! We are generally healthy but our red fatty meat intake was always high and that seems to not be working out well for his levels for his pancreas for some reason. His BG levels are fine but he gets cramps and indigestion a lot easier now. He’s been tested for basically all the gut issues that can accompany T1D so we are pretty sure it’s not that.
It’s just difficult to change your whole mindset about food and not get overwhelmed.
That’s definitely the truth and you’ll find a lot of empathy here. Something I heard on a podcast a while back might help you, that people with LADA (like me) or injury to the pancreas that happens later in life (like your husband) may have a different relationship with food than those who were diagnosed T1 when they were children. It is more like a Type 2 mindset, with different psychological challenges around “restriction” and “deprivation”. I would recommend for now that you pay a lot of attention to the T1 (or other) folks who keep pizza and pasta on the menu and handle it with insulin. Whether that’s a healthy food choice or not is irrelevant; the fact that he CAN manage T1 without massive dietary changes is what’s important to realize. The choices he makes with his diet after that are just a piece to the puzzle, not the whole picture.
I hope that makes sense. I’m sorry you and your husband are going through this. You WILL figure it out!
With a 5.7 A1c, I think you’ve done an excellent job establishing a baseline. Now that know you can do it, I’d suggest weaving some of the things you miss the most back into your diet, dose as best you can and monitor with your CGM. From there you can experiment with a different dosing strategies the next time you have that food. Keep iterating until you’re happy with the results. It takes patience, but it is possible as many here will attest. You’ll find many people here willing to share their strategies, but what works for one person many not work for another. We use the acronym YDMV (Your Diabetes May Vary) here frequently to reflect this fact.
My strategy includes a few elements -
I have to control my desire to ‘binge’ when I’m having a food I love but don’t have on a routine basis.
I need physical activity after I eat. Nothing strenuous. Things like taking short walk work for me. I just can’t be a couch potato or my BG will skyrocket no matter how much insulin I take. As an example, when my wife and I go out for dinner and a movie, the movie always comes first
Talk to your endo about Afrezza. It’s an insulin you inhale at the beginning of a meal. It acts much, much faster than injected insulin. Some people use it for all their boluses, others (like myself) use it when having a particularly high carb meal (Pizza for example).
Rest assured experience will improve your ability to cope.
Beth, I think diabetes no matter how it occurs is never easy to reconcile. I suggest that it might be possible to concentrate on things other than diabetes. I have been doing this for 43 years and if I had to worry about it every day I might not be able to sustain my efforts. I like a piece of chocolate, bicycle riding, movies, and popcorn. Is all of that good for diabetes? Of course not, but all of it helps me feel as normal as possible. Seek the fun, is my best advice. Of curse we have to take care of ourselves while we do that, but regardless, I a person long before I am a person with diabetes.
Glad your here, @beth39. Its interesting to have a ‘trauma’ diabetic in the mix. So rare they are almost always forgotten about. I am very happy with his a1c value. That a1c almost correlates with that of a non-diabetic. Good job! In 27 years of being a diabetic, I have never had such a good a1c. Your doing great. Watch out for lows.
How is he feeling, in general?
Are his issues with fatty meat because of blood sugar? The pancreas also has an important role creating digestive enzymes, so if it’s not blood sugar-related, I’m wondering if he might be having issues that are unique to his situation and not something most of us T1s deal with, because our pancreases still produce digestive enzymes ok. We generally can deal with fatty red meat fine, so you might not get super helpful answers for that particular part of his issues from diabetics.
I know someone in this situation, and she has to take enzymes in addition to insulin.
My ex’s dog actually almost died of malnutrition before she and the vet realized she had a deficiency of pancreatic enzymes (food would basically just go right through her without being properly digested and she kept losing weight)—now that she has enzymes added to her food, she’s fine.
@cardamom His doctors have mentioned possibly adding an enzyme supplement to his routine. We are going to try to see if a change in diet alone helps first and then he’ll most likely get the supplements. We’re cutting out red meat and fatty foods (bye bye bacon ) If that doesn’t seem to help within a month or two we’ll try the supplements. His Endo said that he still make CPeptid so I know it at least works a little lol!
His Endo said that he hasn’t seen an a1c that low in his 15 years as an endo! We were super excited to hear him say that.
My husband is somewhat of an medical enigma.
@mohe0001 He generally feels god now. The CGM is saving our sanity and helping us (mostly me) Feel less anxious at night. I had to wake him up like 3 or 4 times due to lows before the CGM. So far he’s only had one Late night low since we got it.
The only other person I know who diabetes from harm to the pancreas rather than autoimmune processes also had a great A1c and generally somewhat easier time with the diabetes control, I think because she still did have some residual insulin production (but was highly deficient and in a way that wasn’t consistent with T2, more like a T1 on perpetual honeymoon). So hopefully your husband will at least have a bit of an easier time with that too, but I wouldn’t hesitate to try the supplements/enzymes if it’s possible he needs them, since he otherwise is not going to be getting full nutrition from his food.
Welcome @beth39, and so sorry you are another family in the diabetes camp. It can suck but nowadays it is a lot easier to handle.
I don’t have any knowledge on your husbands digestive issues and how his diagnosis came to be, but I do know diabetes!
And my only suggestion this early on is to not sweat the small stuff. And much of this is small stuff. If food is an important, social aspect for your family, it can still be. Way back when our meal prep change in only two aspects. No sugar and more vegetables. Cutting out cookies and snacks was pretty easy as my Mom didn’t buy that kind of stuff, but the veggies were hard. My siblings hated the introduction of broccoli and spinach!
But now, I eat whatever I want, whenever I want. And even when I miscalculate a carb number or a prebolus, I just fix and more on. I mean I don’t hit it every time with my pizza bolus. Some call for a longer extended than others.
So much to learn. So just little baby steps. Take it one day at a time. And experiment. Everyday when things go haywire, it is a learning moment. Take the info and move one to use that know the next time. I know all of you will get it. Even a 49 years of doing this, I am still learning new things. Hang in there and enjoy each and everyday!
I wanted to update everyone. We’ve been doing a lot better with keeping to a low fat low carb diet. We’ve started eating more fish and some shrimp instead of the red meat. It’s been a little bit of a learning curve realizing what fish we actually like and that the kids will actually eat. (Pollock and cod are out) Tilapia has been a life saver. I even figured out a great fish taco recipe! We may be able to avoid the enzyme supplement at this point because he hasn’t been sick in about 6 weeks. We found a restaurant in town with a veggie burger that tastes like actual red meat! A vegan friend recommended it because she tried to send it back thinking they got her order wrong.
I appreciate this site so much! Thank you all for you advice and support. I love being able to search topics and read advice that has been given in the past as well. Makes getting an answer to my questions much faster