To mark World Diabetes Day 2019, we sought out advice from long time T1Ds and parents of T1Ds, to help those newly diagnosed. The contributors below weren’t chosen at random – they are folks who’ve been running normal, nondiabetic blood sugars for many years. These are just the sort of people I would have loved to talk to when my son was diagnosed.
How do they manage the monster that is type 1 diabetes?
You’ll see that there is a common thread throughout their diabetes management, something different from the typical diabetes protocols you’ll hear at diagnosis.
My own advice, as the father of a teenager with T1D, is to aim for normal blood sugars. We often hear that a number is just a number, not good or bad. That number, however, largely represents your child’s health and can affect their longevity. The truth is that it’s possible for any T1D to be as healthy as any of their non-diabetic friends and you can read about that in published literature and all over social media.
Cynthia Kucharski, T1D for 30 years (since age 8): “Don’t be afraid. Getting diagnosed with type 1 diabetes can be traumatic. Allow yourself to feel whatever emotions you want to feel for as long as you want to feel them, even intense anger. But don’t ever join this disease in hurting you by not taking care of yourself. Love yourself enough to take care of yourself. Another thing—it does get easier, and you will find that you have what it takes to rise to the occasion. The silver lining in this disease is the wonderful people you meet because of it.”
Sysy Morales, T1D for 25 years: “My daughter has had T1D for about a year. We both keep non-diabetic A1C levels. My advice is to respect that the body requires homeostasis to be healthy and a big part of that is normal blood sugars. How do we do it? By eating a high protein diet that’s low in carbohydrates, using insulin properly, and respecting the realities of this condition. Why do we do it? Because I grew up with blood sugars typical of most type 1s and I know the damage they can cause in a few short years.”
Hanna Boëthius, T1D for 34 years: “My advice is to understand just how much sugar/carbs there are in foods, and to realize the body doesn’t need it.”
Dan and Michelle, parents of Samuel, T1D for 8 years: “Our advice is to read Dr. Bernstein’s Diabetes Solution.”
Lock, T1D for 8 years, age 14: “My advice is do not underestimate the importance of protein. It makes you feel full, it feeds your body what it needs (nutrient dense), and it is easy to find!”
Christopher Gantz, RN, T1D for 25 years: “My advice is to strongly consider limiting carbohydrate consumption. It’s non-essential and literally the one macronutrient that we can no longer metabolize effectively.”
Mike Harry, T1D for 4 years: “My advice is do your research as there’s more than one way of managing T1D. Dr Bernstein is walking proof that you can normalize blood sugars forever.”
Dr. Richard Bernstein, T1D for 73 years: ‘If you are newly diagnosed with type 1 diabetes, in all likelihood you’ve been told to eat a lot of carbohydrate and target a very high blood sugars. This advice makes no sense and the outcomes are horrendous.’
David Dikeman, 15 year old. T1D for 6 years: “My T1D management goal is to make diabetes impact my life as little as possible. I eat very low carb as it allows me to perform as an athlete without danger of hypoglycemia or feeling awful from running high. My strategy is to enter into sports with normal blood sugars and no insulin onboard. I still check my blood sugar, but it is very predictable.”
Bethany McKenzie, mother of T1D for 6 years: “My advice is to trust your gut. If it doesn’t sit well with you to see your child being fed junk in the hospital upon diagnosis, perhaps you can consider that their medical team may not have the proper nutrition training to manage a metabolic disease.”
Sara Pomish T1D (LADA) for 8 years: “After having been misdiagnosed as Type 2 for several years. I would tell newly diagnosed adults who don’t fit the metabolic profile of a Type 2 to insist on antibody testing to ensure they are receiving the right treatment.”
Matt, father of a young T1D son for 3 years: “My advice is to think for yourself – diabetes is a family managed disease, and while the doc can help, the responsibility for health and happiness lies with you.”
Ahmed Afifi T1D 17 years: “Controlling diabetes is a decision that cannot be postponed. The medical community has failed to rise and defend a diabetic’s right to live with normal blood sugar. So, my sincere advice to parents of T1D kids is to learn deeply about diabetes management and aim for normal blood sugar.”
Brooklyn Wesley, mother of T1D for 1 year: “My advice is to eat low carb as a FAMILY!”
Dave, T1D for 42 years. “My advice is for the parents of newly diagnosed T1 kids. Normal blood sugar is everything when it comes to getting your kids behavior, max growth, and attitude back to where it was before diagnosis. Follow groups like LetMeBe83 and TypeOneGrit to succeed.”
Lester Hightower, father to a teenage T1D son diagnosed 9.5 years ago: “Misinformation about type 1 diabetes management abounds. My advice is to buy and read Dr. Richard K. Bernstein’s best selling book, Diabetes Solution, and to study it and to use its principles, along with feedback from your blood sugar meter, to learn what actually works and what does not. Then, armed with truth and confidence from those first-hand experiences, vet all things that you read and that you are told through that lens of truth. Just as an example, tips that helped us: when my son hit puberty, the biggest single impact on maintaining exceptional blood glucose control was to 3-way split Levemir, with each dose and timing titrated to match his body’s different round-the-clock basal needs, followed by using Regular insulin for most meals. Neither of those tactics are commonly recommended, but both are core principles of Dr. Bernstein’s regimen.”
Debbie, T1D for 12 years: “My best advice is to eat a lower carb diet. You use less insulin which leads to a lower occurrence of dosing mistakes, keeps you off the blood sugar roller coaster, and lowers A1C. My current A1c is 4.6%.”
Gina Roberts, T1D 12 years: “My advice is to trust your instincts. There is a reason why it seems counterintuitive for someone with T1D to eat a large amount of carbohydrates. We are carb intolerant and consuming them in large quantities only creates complications of this disease.”
Holly, mother of 7 year old T1D for 4 years: “My best advice is to moderate your carb intake. Diet matters. Watching what we ate gave us the control back in our lives. While T1D is always there, it can usually stay in the backseat instead of driving every decision we make.”
Pam, mother of 15 year old T1D diagnosed 6 years ago: “My advice is to take control of your blood sugar! Its possible! Do your own research. Eliminate high carbs (it will never work). Stay healthy by eating low carb and high protein. Emphasize protein for growth and development.”
Dr. Ryan Attar, T1D for 12 years: “My advice is make your goal to have non-diabetic blood sugars (around 83mg/dL) 24/7 with minimal spikes and drops, mostly flat lines. If you work backwards from this goal you’ll find that a low carb diet is the best way to achieve this.”