Type1

Coping & Support
21

Thanks for the tip! I have had Ezekial bread before and really like it. However my understanding was that their breads do contain wheat flour? (although it’s not gluten that gives me issues, but rather the starchy part of the wheat grain that sends my blood sugar higher than anything else, for some reason).

I imagine socializing, work, lots of errands, etc. is difficult with T1D. I’m a homebody who loves cooking (and so cook dinner every night, and prefer that over restaurants), so I haven’t had to deal with that whole aspect, fortunately (and covid of course has forced that on everyone, no matter how social they are otherwise…). I do MDI (multiple daily injections) and so far it’s working for me, and I’m getting better at it. But I can also do whatever I need to do injection-wise, since I’m just home so much of the time. If I was out a lot, I think I would seriously consider getting a pump. There’s always the financial issue to consider, and it is another device attached to your body, and has its own learning curve. However it may make being on the move and being out and social more manageable than having to inject. Just something to consider!

Yeah it’s totally demoralizing to not be able to just reach in the fridge or pantry and eat whatever. I’ve broken down and cried a lot. My husband eats a sandwich with two slices of bread and chips and doesn’t need to think about it, and for me it would be a physical and mental ordeal. And this ordeal with food has to be done everyday, multiple times a day, for the rest of your life. It really sucks. But I think at least knowing how to manage it does get better with more experience, and becomes less of an ordeal over time (I hope, anyway). Otherwise I try not to dwell on how crappy it is anymore, and just deal with it, put whatever thought I need to put in in the moment regarding what’s doing what and why, and then move on mentally (or at least I’m trying to do this more, at any rate…)

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22

You probably saw my reply, which I added later, but if not, here it is again -

I should add that my treatment for Grave’s was radioactive iodine. I actually had to take two doses, because the first wasn’t effective enough. My parents opted for that option over surgery. I’ve developed an issue with salivary glands by my throat not working very well, which causes a dry throat at night. I think it may be due to the radiation, but who knows for sure. However I’m still glad they chose that option over surgery, but that’s just my personal preference. So, once you get that initial treatment of the overactive thyroid out of the way, the rest is easy… best, becky

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23

Also it was a bit misleading for me to say “I hope” it gets better… it really has started to get better for me. I can manage it better, anticipate things better, and deal better mentally when things don’t go as planned (which is everyday, in one way or another). What I DO hope is that it continues to get better, and that I really can, at some point, eat whatever I want to without having to worry about my blood sugar… so anyway, again, positives do outweigh negatives… :slight_smile:

24

Hi again, Becky. I have no issues with the Ezekial bread at least I don’t think. I inject before each meal and my numbers are good before each meal with carbs. I have tested a couple of hours after a meal at times because I felt a little shaky but numbers were fine. How do you know that makes your numbers high? Do you test before each meal?
I realize we are all unique and foods react differently in us all.

I just saw you most recent note. You mean there is a time when we can eat all foods and not worry about the numbers?? Pardon my ignorance… do elaborate please.

P.P.S. What carbs do you eat of you can’t eat much bread? I get 40 grams per meal and half of it comes from Ezekial bread.
I’m not foo fond of cooking; I do it but don’t enjoy it too much. Do you have a diabetic recipe book you have put together you can share :wink:
Good idea for a side business!

25

P.S. I just did a second test with having a teaspoon of sugar with my lunch today and the numbers before my dinner were only 15 points different. The dietician in the Dr. office tells me that simple sugars interrupt the job of insulin. A couple of guys in this forum say otherwise. I don’t know… I have a list of questions for my Doc next week.

26

@HopeFloats2020. I know you’re just getting started but since you are wondering about the effects of foods on your glucose levels there is something called the glycemic index you might be interested in and might help with some of your questions. In a nutshell, all carbs are not the same, and two foods with the same carb count may affect glucose differently: those on the high end of the index cause a rapid rise, while those on the lower end will cause them to rise more gradually and level off. It should not replace can counting but might help you with composing your meals.

27

I am aware of GI and I avoid all foods that have high GI with the exception of a little sugar a few times a week. My dietitian told me that high GI foods such as sugar disrupt the work of insulin which concerns me.
Do you use a specific app for that, by the way?

28

Please know I’m not an expert, I’ve only had this diagnosis for six months, I’m only just doing my best to figure out everything I can as best as possible. So, from this limited, non-expert knowledge base, my response would be that your doc may be thinking of T2D, which eventually occurs due to the pancreas constantly being overloaded with simple sugars and overly processed carbs, so it just gets worn out.

If I have 15 carbs or less of store-bought, whole wheat bread, I have no issues with blood sugar. But if I make homemade biscuits or sourdough bread, etc., and have just one biscuit or one slice, I have an issue 4-5 hours after eating where my blood sugar goes well into the 200 range. For now, I think I just don’t have the skills yet to get my insulin dosage and timing right for bread, or one whole russet potato, or two servings of tortilla chips, etc., but that there is some strategy that would work that I’ll hopefully figure out.

I know what my numbers are at all times because of my CGM. I did finger sticks for the first two months of my diagnosis before I got my CGM (Dexcom). You get way more info with the CGM than you do with finger sticks.

I don’t limit carbs for any meal, although I naturally don’t go much over 80. That sounds like a lot, but what is far more important (I have found) than number of carbs is type of carbs. Furthermore, 30 grams of bread carbs are not simply two times 15 grams of bread carbs - this is due to glycemic load: https://en.wikipedia.org/wiki/Glycemic_load#:~:text=The%20glycemic%20load%20(GL)%20of,eating%20one%20gram%20of%20glucose.

I think my strategy, and the strategy of people I’ve been turning to (like the Think Like a Pancreas author) is to eat what you want, and, with the aid of your CGM, develop a strategy that works 80-90% of the time in keeping your blood sugar from going much above 180, or staying there for very long (you can’t control everything all the time, of course, and numbers way out of range of what you expect are going to happen now and then). Can you expect to eat three Paydays in one sitting without your blood sugar skyrocketing? Probably not. But one - yes indeed. Same goes for a bowl of ice cream, a couple slices of pizza, a bag of M & M’s, etc. What I mean by “not worry” is just that - I’d like a strategy for any food I want, in moderate portions, that works 80-90% of the time. I’m keeping the hope that I’ll get there, and so far, I’m getting better…

29

@HopeFloats2020, @joe

Cathy & Joe, I must agree Cathy’s cousin’s friend must have been lead down the same path as those using recreational inhibitors of high level neurological function. ( GRIN )

On a note to really mess with some minds, look up the proteins called PRIONs. Supposedly they are only problematic in the central nervous system. There was a doctor in Florida whose medical license was revoked for telling some people a prion-like substance caused diabetes.

As a whacked out point to ponder, my mind pulled a ‘brainstorm’ and thought cousin’s friend’s doctor may have been smoking the same stress weed.

Cathy, I am sharing this waste of space more for its humor value than anything else.
Joe, the stories some people tell.

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30

While I’ve studied the glycemic index I don’t actually use it - something I should have said up front. I don’t mean to be hypocritical - personal experience is the best reference - but just wanted to give you something to check out. I am thinking it is dishing I should work in though - my numbers do tend to rise quickly after eating, and substituting and fifa with lower GI ones, or perhaps including them, could be helpful for me. I use a Dexcom CGM with CIQ with my Tandem pump, and while it did a pretty good job of managing my numbers I could tighten things up more.
I don’t know about GI apps but there are some references online.

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31

Thanks, again Becky, for sharing!

32

Thanks, Dorie! Appreciate the feedback, as always.

33

Me again… I think I mentioned that my Endo has given me 40g carbs per meal. I have read on this forum, including you if I recall, that some people are eating way more than that. I wonder why I am limited to that. Do you know if this is common to have this amount?
I will add this question to my list for my next visit.

34

I can’t recall a doctor ever limiting my carbs, just calories. If I had to hazard a guess they are trying to teach you to be “carb conscious” (my term) - to get you used to counting carbs by aiming for a specific number; and in the process seeing if the carb ratio you have is working. That’s just a guess. You have lots to discuss at your upcoming visit - make sure to write down questuons, and don’t be shy about asking any that come up during your discussion.
BTW, I’m not sure if this came up earlier but if your doctor has a diabetes nurse educator make an appointment with them. As the title suggests, they teach you about diabetes (doctors treat, DNEs teach). My doctor is great but the DNE has more time (in my experience) to educate on some of the ins and outs. A good question for your doctor could be when to call which, for clarity.

35

Thanks, again, Dorie! I will check into the DNE. What if my doc doesn’t have one? Can you suggest where to find one. I am presuming she doesn’t have one otherwise she would have told me.

36

Hi Cathy, what your endo has prescribed for your diet is similar to what was prescribed for me in the mid 1950s. That was in the "dark ages before the advent of monitoring devices and when insulin, extracted from animals, was not well refined and a blood sugar reading took two or three days to develop and a single BS Test cost a day’s wage. The teaching was to take a fixed dose of insulin every morning and MAKE your food intake, and activity “fit” the insulin - not much fun. Known as the “cheater”, the “sneaky”, the “starvation” diet.

The common protocol these days, for non-obese people with autoimmune diabetes [TypeOne] is to eat a healthy diet that provides sufficient nutrition for a person to live a full, active, and productive life; the diet should match each individual’s particular body needs.

37

Hello again Cathy.
The term “DNE”, commonly used in this forum, is becoming outdated, it means “Certified Diabetes Nurse Educator”, or “Doctor of Nursing Education”. the new name for that position is “Certified Diabetes Care and Education Specialist (CDCES)”.

If your doctor can not refer you to one of these diabetes educators. you may be able to identify someone at the following webpage by clicking the Menu identifier in the upper right and clicking on “Locate” and entering your location. An alternate method, is to speak with people in your local JDRF Chapter. You can find a JDRF Chapter by clicking “Events TAB” at he top of this page, selecting “JDRF Near You”, and entering your zip code.

Good Luck!

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38

Thanks a bunch, Dennis! I truly appreciate the feedback and recommendations!

39

I highly recommend following Dennis’ wisdom. He has awesome experience to share, not to mention research he has done to further his knowledge. I myself was not aware that the familiar “DNE” term had become - or is becoming - outdated, so thank you @Dennis for sharing that. I will have to learn the new terminology - forgive me if it takes a while to catch on!
PS - I’m curious about your endo’s approach based on the little you have shared. As @Dennis said, the carb recommendation is from time gone by. Of course I don’t know your doctor but you said you are being treated for Graves’: endocrinology covers a number of areas and an endo may not treat or be familiar with all. I see endos who are board certified in diabetes treatment - I find them to be up to date on the technology and advances, so they can best help me manage my diabetes on my own.

40

No I don’t pay attention to carb amount. I tend naturally to eat modest portions, not because of diabetes, but that’s just what I’ve always done. At the same time, some dinners (my biggest meal) I’ll have 40 carbs, others I’ll have 80 or more. Carb type is at least as important for glucose management as total carb amount, too (25 carbs of beans will affect your glucose differently than 25 carbs of potatoes. In fact, I use 50% insulin for legumes relative to my normal insulin/carb ratio, otherwise I go hypo).

My guess (which may be presumptuous, I’m just being honest) is that your endo is giving you a very general, broad, blanket rule-of-thumb (and one which is probably more suited to T2D than T1D). This type of cookie-cutter advice is just not advice you can - or need - to adhere to with this disease, to be quite frank (see next paragraph).

I would stress the following: what you should do in terms of what you eat is whatever works for YOU to keep your glucose levels where YOU want them. That’s something you can only figure out on your own, day-to-day, through trial and error (and w/ help of a CGM, ideally). Try eating 50, 60, 70 carbs per meal, and more, and try figuring out how to give yourself insulin correctly for whatever foods you want to eat. For insulin, it’s important to get correct the timing + amount, and these things are so variable from day to day, meal to meal. What you’ll probably learn quickly is that diabetes takes day-to-day, at times moment-to-moment, and always context-dependent management, and no doctor (or anyone else) has the ability to do that for you, only you do. Furthermore, the best people to turn to to help you figure all this out over time are other people who have first-hand experience managing the disease themselves. So don’t just do what your doctor tells you; use it as a rough estimate, or rough starting-point; but when you keep going too high or too low, or if you feel up to the challenge of eating whatever food you want, make your own adjustments and your own attempts at doing your best - that’s the only way to manage T1D successfully. :slight_smile:

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