Reading Dr. Bernstein's Book and Getting Discouraged

Newly Diagnosed
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Hi guys! I mentioned here in a previous post that my 6 year old daughter was just diagnosed a few weeks ago. Currently semi-desperately trying to normalize insulin and blood sugar checks in our daily life and also trying not to overdo it with carbs while at the same time not wanting to completely change what my daughter “can and can’t” have.

My overall question here is - for those of you who have been managing your diabetes pretty well for a really long time - have you used this super low carb diet method that Richard Bernstein advocates?

I had joined and then quickly left a Facebook group of “Parents of newly diagnosed Type 1 Kids” because most of the posts were almost obsessively discussing stuff related to Dr. Bernstein and his work, and I had no clue what they were even talking about and it was overwhelming.

Anyway, I have his book now and am flying through it, and see a lot of the value in it. But the fact that SO MANY THINGS that are normal (even if not in huge amounts in our diet) in what we tend to eat are on the do-not-eat list (so, bread, pasta, fruit, cereal, milk, corn, potatoes…etc.)…just…wow. Of course I want to give her these in careful moderation, but the idea of cutting them out entirely is crushing.

Any thoughts? I’d love your thoughts on this.

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Hi @AngGottberg and thanks for writing in. I have seen posts from some people on the forum who have found success with the low carb diet, and I will let them speak to that. While lower carbs lowers the amount of insulin you need to take for meals and snacks, insulin’s purpose is to cover those carbs and convert them to energy so the body can function. There was a time - decades ago - when the list of allowed foods was depressingly short, and people had to eat the same foods day after day. Thankfully knowledge has progressed greatly, and many if not most of us on the forum find we can enjoy our preferred foods so long as we cover them by counting the carbs and having the appropriate insulin/carb ratio in hand.
Another book you might check out is Think Like a Pancreas by Gary Scheiner- the most recent edition came out several weeks ago. The author has diabetes and works in the field so he can speak professionally and personally. I found he gives facts and information without advocating a particular product.

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for those of you who have been managing your diabetes pretty well for a really long time - have you used this super low carb diet method that Richard Bernstein advocates?

hi @AngGottberg,in a word, no. I like carbs. 40+ years treating type 1, and my hba1c is 6% I like pizza, and beer, and ice cream, and ice cream cake, and fruit and pasta,

When I want to lose weight, I go low carb and low fat and reduce my need for insulin to minimum and I get smaller. I can’t eat enough bacon for me to stabilize on a ultra low carb diet… so I don’t, I tend to only use that kind of diet to get smaller.

When I am active, I go medium to high carbs, low to medium fat and high protein. I do this because I need the instant energy of the carbs. it works for me. I can ride my bike and enjoy decent blood sugar without needing a lot of insulin.

For me, personally, high carb + high insulin without activity = gain weight

Now I am 50+, male, weight 170, about 5’-10" and so my needs are very different from your daughter, who, in my opinion is in a massive need of calories, and carbs, to fuel activity and support doubling and quadrupling cell growth… but I am a mechanic and not a pediatric nutritional expert.

if you learn how to use insulin then there IS NO diet restriction and your daughter doesn’t HAVE to eat low carb, she can eat what she would have eaten had it not been for the diagnosis

final though - 40+ years experience and my blood sugar, according to my meter over the last 90 days = highest recorded 390 mg/dl, lowest recorded: 29 mg/dl there is no version of type 1 that .gives you perfect blood sugar all the time. This is a disease where you have to make hourly decisions based on insulin, activity, and food, along with stress, heat, what happened last time, and a little bit o’ luck. You will be an expert in 10,00 hours, I promise you that.

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Thanks Dorie! I’m definitely checking out that book too.

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Thank you! This is encouraging. Definitely aiming for balance here and want her to enjoy life as a whole person.

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Hi Angelica @AngGottberg, for some people with diabetes, Dr. Bernstein is mounted on a pedestal and hold his word as truth. What he preaches, if that is what he actually practices in life, has worked okay for him and for some others. Some time ago, I picked up his book in a bookstore [remember those?], flipped through a few pages, and put it back saying “not for me”. In my very humble opinion, he wants people with diabetes to live abnormal lives.

There are many “diabetic diets” promoted, there are many lifestyles. If you are healthy, Angelica, and are living a good, productive life, and are happy with yourself and those about you, there is not any reason that your daughter can not live the life you are living, and also be healthy.

I offer myself as an example even though times have changed and much progress has been made for us who live with diabetes. I was fourth born of my parents eight children, and from the first day I came home from the hospital after my diagnosis on my 16th birthday, I sat at the same table, and ate exactly what everyone else was eating - except for some of the awesome pies and cakes my mother baked. The only “special cooking” for me were some desert creations my mother invented. We ate quite heartily, a “meat & potatoes” type family. Yes, especially at the beginning, I had to learn to become aware of portion-size. For my age, I’m fairly active and normally eat 225+ grams of carb every day. I enjoy food, and I’m looking forward to the time it will be safe to visit a couple of restaurants every week.

The bit of advice that I have for you and your daughter - mostly you at this time - is to choose a lifestyle with which you are comfortable and adjust her diabetes management to fit. It can be done. For your daughter, what you lead her in now will become her natural way of life. Diabetes involves an intricate balancing act - and I hope I don’t over simplify.

In the cow-barn, we use a three-legged stool because it self-balances and the person milking doesn’t tip and get dumped unpleasantly because each of the three legs is on solid ground. A person with diabetes sits on a stool that employs three legs - Activity, Food, Insulin - to maintain balance. Your daughter, with guidance from you, will learn the amount of insulin she needs to counter-act the effects of food and her activity.

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Thank you for this! I’m trying so hard to figure out life still being mostly our usual “normal” without also setting her up for complications now or later. So far so good, but man what an information dump.

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Do a search for “Parents” on the forum and you will find lots of information and support from parents who are going or have gone through what you are now. You’re in good company!

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Hey there @AngGottberg! Welcome to the crazy world of T1D. I was diagnosed when I was 7 (I’m now 17) and one of the first things my parents asked my doctor was whether I would still be able to eat sweets. He replied, “she can eat 5 full-size Snickers bars if she wants to, as long as she takes insulin for them.”
Some people with T1 find that their condition is easier to manage if they limit their carb intake–and obviously it’s important for people with or without T1 to eat a healthy and balanced diet. That said, there is nothing you, or any other healthy individual, can eat that your daughter cannot. As time passes, you’ll learn more about how to give proper amounts of insulin so that she can still enjoy all of her favorite foods. And in the meantime, please don’t hesitate to reach out with any other questions!

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Hi Angelica, I am a member of the FB group you mentioned, but do not follow a strict low carb diet for my son. We are “lower carb.” I find many of that FB groups recommendations for food substitutions helpful, and skip over most everything else. When my son came out of honeymoon, it became very hard to control his blood sugar. No matter how much insulin he took, certain foods sent his bg skyrocketing and it was hard to bring it down. I slowly starting substituting high carb foods for lower carb/high fat/high protein substitutes (he wanted to gain weight/muscle). He eats the foods he’s always enjoyed, but in a lower carb version (pancakes, waffles, cinnamon buns, pizza, chicken fingers, muffins, sandwiches, fajitas, ice cream etc.). We don’t restrict him, and if he’s out with friends and they’re getting a burger and fries, that’s what he’ll eat. I’d say he’s lower carb about 80% of the time. He feels good because he doesn’t get much in the way of swings (except when he eats burger and fries, lol), and he gained 25 lbs in the past year making these adjustments. There’s obviously a lot of different opinions on this subject; ultimately you will decide what your goals are and what’s best for your family.

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Hi my daughter is 8 and I definitely use dr Bernstein’s book. It was the first book I read online while in the hospital with her when she was initially diagnosed at 3. I purchased the book after she left the hospital and refer back to it. I understand your stress because you want to do what’s right for your daughter and diabetes is a rollercoaster and scary at times . We are 5 years in and I still freak out but what I do know is every kid is different. What may work for my kid may or may not work for yours but I do know balance is key. Even though I didnt agree with the doctors when they said give my daughter what she wants to eat including any sweets , I do make sure she gets as close to what she likes as possible. There are so many recipes on pinterest that type one grit has. They are the group that follows dr bernstein protocol . There are so many brands that have foods for diabetics . I am a working single parent and had to adjust a lot with making certain foods for her but it’s a routine we have now. You just do your own research , it’s all trial and error but you will come up with a nice routine for your child . Everything will be fine ! Dont put too much pressure on yourself to get it right everytime !

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I never have been and never will be a fan of low carb diets, but that’s just me. I have a very strong sweet tooth and any form of low carb diet would be unbearable. I’m also skeptical about the health benefits of low carb/high protein diets. Ketosis is the body’s last resort against starvation and I don’t see why I would want my body to be in starvation mode all the time.

I was six when I was diagnosed, too, but that was almost 30 years ago. Back then I was put on a strict diet in terms of how much I was allowed to eat, but I don’t recall there ever being any foods that were 100% off limits. My first endocrinologist told my parents to take me out for a hamburger and fries after our first appointment. My mom did throw away all the candy (like fruit rolls ups and fruit by the foot), but even that eventually worked its way back in as low blood sugar treatments. I was often motivated to play outside by the fact that I got to have half a chocolate bar to raise my blood sugar every time I exercised. And once in a blue moon I could even talk my dad into letting me have half of a Cinabon cinnamon bun or half an Auntie Anne’s pretzel for lunch. I just couldn’t have anything else until dinner time because even half was more carbs than I was supposed to eat in a sitting. Now, though, with the newer insulins and technologies that kind of diet isn’t really necessary.

The one positive thing I will say about limiting (not removing) carb intake and/or carb type early on is that it might help you to learn how your daughter’s body metabolizes carbohydrates and how much insulin she needs. Then once you’ve gotten the hang of things you can start experimenting with more variety. You don’t need to cut her favorite foods out completely; just watch the volume.

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Hello, I know how extremely scary this is when your a mom with a newly diagnosed child. We want to do EVERYTHING right and keep them well. I read up on almost every book I could get my hands on. In the end we learn to settle down into the new normal, which you will find in your own time. I have two Type 1 kids. They came down with it 8 months apart from one another. My son is and always has been the over the top type who does everything in excess. His eating habits did not change much. He played football through college and ate as a football player eats. He was diligent and made sure to cover his carbs, and continues to have a pretty good A1C. My daughter likewise played sports through high school, and is the healthy eater type, her A1C is a bit better than her brother’s but she does tend to go low more often. They both use a Dexcom CGM which has been a godsend for us. They both learned through living the new normal how they’re bodies metabolized carbs, and adjusted with activities they participated in. It is always fluid, changes occur as they grow and certainly when they go through puberty. In my non-professional opinion there was no need to severely change their diets, it is hard enough living this new normal, I did NOT want them to feel different or punished for having this disease. They continue to live their lives as normal as anyone else, just with a few extra steps :slight_smile:

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Hi! My 6 yo daughter was diagnosed last November. TheThink Like a Pancreas and a book called Surger Surfing have both been very helpful to us. I read somewhere that taking vit D and eating a gluten free diet can both help honeymoon last longer (Not proven though), so while I don’t do those obsessively, I try to make it a lifestyle she can enjoy and learn how to eat so she feels well. So while I make keto brownies for her and myself and sometimes keto waffles and pancakes, if the rest of the family is having bagels, I let her have one too, and I write down how much insulin it takes to bring her down, so I’ll know better for next time. Sugar surfing has tips on learning how diabetics can eat normal food and keep their blood sugar more stable. It’s been a tough 9 months as I try to figure out how different foods affect her. But just when I started feeling like I wasn’t getting any better because her blood sugar was over 250 or 300 again (briefly) because of something she ate, I’ve been starting to have times where she eats foods that have been hard to master like pizza and she stayed under 180 the whole evening/night, so it is finally starting to get easier. I hope this helps a little!

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Thank you! This definitely sounds like our approach too. I’ve already made a few almond flour waffle and almond flour cookie recipes and whatnot, just so she can eat more than one without it mattering overly much, but we’re still trying to eat a lot of the same things as before, just without going nuts with the carbs. She still has to be assessed next week as to whether or not she has celiac too (tested high on something for it in the hospital but has no symptoms…??), so there’s a possible chance of having to go gluten free anyway, but for now they said to eat our normal diet.

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I see you’ve had a of responses so I will be brief. I tried Bernstein’s diet for two weeks. Even prior to being diagnosed I tried to eat lower carb for health reasons, so I was hopeful the keto diet would make me feel great. It didn’t. I felt awful, even after 14 days, so it wasn’t just the adjustment. Currently, i try to eat in moderation. I try not to restrict too much much, eat healthy, but have lots of treats, too. I found “Think Like a Pancreas” very helpful as well, and would recommend that book. I am so sorry that you are going through this with your daughter. I cannot imagine having a small child with a Type 1 diagnosis, but clearly, there is a lot of support here for you. You can do this!

Jess

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@AngGottberg, welcome to the Type ONE Nation. The sages or gurus on this forum are @joe, @wadawabbit, & @Dennis. They have been here for a long time. Their words are true and can be trusted. I am a retired school teacher and want to share a short story about a second grader from years ago.

The story: A second grade transfer student, on their first day, got out their meter, and other items to perform a finger stick. The student measured their sugar, got out a syringe and gave their own insulin shot.

The teacher was apparently un-informed of the student’s abilities and needs, reported the child to administration. This was years ago in the climate of ‘no drug paraphernalia’ allowed & before IEPs & 504s. Student was expelled under zero tolerance drug policy. The parents sued and almost ended up owning the county school system.

BOTTOM LINE: This second grade child knew their stuff and was able to do self management. With today’s pumps and CGMs, management is much easier if you and your child’s doctor work it out. As an idea, check out the Tandem t:Slim with Control IQ technology (6 yrs up) and Dexcom G6 CGM (2 yrs up).

I know my reply is not about Bernstein’s book. I wanted to share 1) you know your child BEST, & 2) listen to your child and be her guide.

Keep us posted on your progress.

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One of the great features of TSLIM with Dexcom (I believe with or without Control IQ) is that it can transmit your child’s readings to you so you’ll know how they are doing.

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Hi, I have 2 sons with T1D. From the start I have brought them in on the planning. So much of how they respond is mentally. The key phrase around our house is “you can eat just about anything you want with planning”. If they were going to a pizza party, I brought a veggie tray. One teacher kept sugar free jello cups in her class so if a surprise celebration popped up, they had something they did not need a shot for. We would have low carb dinner and then a dessert was an option. We ate dinner in the 5:00 to 6:00 range so they could be in range when they went to bed.(They needed active time or their glucose would be high) If your child has siblings, feed them the same. Anything with a definable serving size is helpful.

By showing the options, they really didn’t rebel during the teen age years. I had them help bag snacks, so they could see carbs. I used it to teach math. Our endocrinologist did not emphasis extreme low carb while they were growing, just hitting a target glucose level. Now that they are in college, they are lowering their carbs more to avoid the weight gain.(Their initiative)

You got this. Reach out if you need anything.

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Another thought came t mind while I was reading this. A very important point that ALL diabetics need to remewmber is that a high or low reading is NOT something requiring punishment or bad feelings: it’s an indicator that you need to correct the diet, insulin or exercise to improve the bg reading. I imagine your love for your child eliminates this problem, but others may not realize this, and the more consistently she is treated by the people she is usually around the easier t will be for her to keep learning and improving as she grows.
I know a bit about this since I’ve been had by T1D for the last 64 years, diagnosed (dx’d) at age 5 on April 9, 1956. In those days there was almost NO idea how to live with diabetes, but somehow I just kept going with my family’s support. The most important thing is that you ARE so concerned, and I’m sure that she will have a good life despite it all, and learn to live and take control once you get her started in the right direction.
Good luck and keep in touch. Feel free to ask ANY question here that comes to mind.

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