20 Mainstream Beliefs That Keep People with T1D Sick

Imagine you were in a class where only 24% of the students achieve a passing grade.

That would feel pretty impossible, right? You might feel depressed, working as hard as you could, knowing that the overwhelming majority of your class would not succeed. Like a mouse on a wheel, doing everything you can, while getting absolutely nowhere.

A 24% pass rate might tell us that the students weren’t prepared. It even might call into question the teaching methods and resources used.

The American Diabetes Association (ADA) has published that only 24% of adults with T1D ages 18+ are achieving the A1c target of <7% (53 mmol/mol). That percentage is even lower for children.

That’s heartbreaking. What’s happening and why?

With all of today’s tools and technology, why aren’t more people meeting the ADA’s target A1c level?

What we’ve uncovered is a series of common beliefs that people with type 1 diabetes are being taught. These beliefs/misconceptions/myths/lies (whatever you want to call them), are NOT promoting health, in many cases, keeping people with T1D far from achieving a 7% A1c, and often in declining health due to chronically high blood sugar levels.

1. “People need to eat 30-45 grams of carbohydrates at each meal to live.”

   Actually, there’s no such thing as an essential carbohydrate. Our bodies produce all the glucose that our brains need through gluconeogenesis and glycolysis.

2. “Kids need carbs to grow.”

   Kids do not need carbs to grow, they need protein (and lots of it), and all the essential amino acids and fatty acids that come along with protein. High blood sugar levels caused by a high-carb diet can cause cognitive issues in kids.

3. “Even non-diabetics have large blood sugar spikes.”

   Metabolically healthy individuals eating whole foods do not have large blood sugar spikes. If you’re prediabetic, T2, and/or eating a lot of heavily processed carbs, yes, you will experience large blood sugar spikes. This isn’t healthy for anyone.

4. “Highs and lows are inevitable.”

   High blood sugar levels are due to excess dietary carbs and a mismatch with injected insulin. Lows are due to too much insulin being used to treat the carbs being eaten. It’s a vicious cycle. When you cut back on the carbs, you reduce insulin needs, greatly reducing the dangers of hypoglycemia.

5. “An A1c of 7.0% (which is the ADA target for adults) is normal.”

   Non-diabetic A1c levels are 5.6 % and below. 7.0% is hyperglycemia.

6. “Diabetes is a progressive disease”

   See #4 and #5. Hyperglycemia (high blood sugar level) is proven to cause cellular damage throughout the body, causing diabetic complications. If you control blood sugar levels, you greatly reduce the risk of diabetic complications.

7. Diabetic complications only start after many years with diabetes

   Complications can start within 10 years after diagnosis.

8. “Whole grains are good for you.”

   Read Grain Brain by David Perlmutter MD, or Wheat Belly by William David MD

9. “Protein is bad for your kidneys.”

   Protein will not damage healthy kidneys.

10. “You only need to test your blood sugar level 3-4x per day.”

    A GGM (continuous glucose monitor) is best, but if you don’t have a CGM, finger-prick testing multiple times per day (as many as you can, up 10 10-12x per day) will give you a decent picture of what’s happening with your blood sugar levels.

11. “Only correct when your blood sugar level is over 250 mg/dL.”

    To avoid hyperglycemia, we need to correct our blood sugar long before it reaches 250 mg/dL. By learning how to correct your blood sugar to your target range, you can do so precisely and safely, maintaining much lower, healthier range overall.

12. “Once you have complications, it's too late to improve your health.”

    It’s never too late to gain control of your blood sugar levels and halt (or potentially reverse) diabetic complications. Retinopathy and neuropathy require very slow and steady blood sugar improvement so as to not worsen those conditions, but it can be done safely.

13. “You can't lose weight because of diabetes.”

    High doses of insulin can cause weight gain, which causes insulin resistance, requiring more insulin. Another vicious cycle.

14. “You can't exercise because of diabetes.”

    Many people experience hypoglycemia (lows) while exercising because they have too much active insulin onboard. By reducing our insulin needs, we can exercise more safely and consistently, without having our best intentions derailed by lows.

15. “All sugary foods are equal when treating low blood sugar levels.”

    Not so. We want a fast-acting, measurable, portable supply of glucose to treat a low. Liquid glucose is ideal because it does not have to be digested before starting to raise blood sugar, like food does.

16. “Eating food that is different than what others eat is alienating, will cause emotional distress and/or an eating disorder.”

    If we normalize our experience, others will as well. Many people will never even notice what you eat. Others won’t care.

17. “An insulin pump is the only way to have better blood sugar levels.”

    An Insulin pump can be a great tool, but pumps are not the only way. Injections are also great, but they’re also not the only way. You can achieve great blood sugar levels with pumping or injections. There are best-practices and testing involved with both options.

18. “You can eat whatever you want and cover it with insulin.”

    Rapid-acting insulin has a very sharp peak of action that is difficult if not impossible to match precisely with the sharp peak of high carbohydrate foods. it’s not your fault; it’s the diet PLUS the modern insulins that have been created to ‘handle' the standard carb-heavy diet.

19. “A low carb diet is unsustainable long-term.”

    A properly formulated and personalized eating plan that helps you achieve more steady blood sugar levels is sustainable, and is easier now than ever before.

20. “Normalized blood sugar levels (as a T1D) are dangerous, or impractical or impossible.”

    People with type 1 diabetes DESERVE to have the tools to normalize their blood sugar levels, but we’re not given the options by our medical professionals. With the proper training, normal, steady NON-diabetic blood sugar ranges are achievable, sustainable and healthy for those of us with type 1 diabetes.

It hurts me to my core because often, people with T1D are shamed by our medical professionals because we're not achieving the ADA's A1c guidelines.

But the game is rigged.

We can't win by following the standard rules. 

After 13 years of type 1 diabetes, I was suffering from IBS, severe clinical depression, and worsening kidney function. I felt hopeless. I was doing everything right according to my doctors, but it never felt right to me and I still wasn’t achieving that mythical 7% A1c.

Now, after 7 years of eating low carb and easily maintaining an A1c level of < 5.5 %, it’s obvious that standard methods of diabetes management are leading to all the terrible, degenerative outcomes of diabetes.  

I’ll always require insulin and nothing is going to change that. But I no longer suffer from my previous list of complications. My blood sugar levels are predictable, and on the rare occasion my numbers are off, I know exactly what to do to correct them to target quickly and safely so I can get on with my life.

That’s what we all deserve.

*The list above was based on a diaVerge Facebook post from 2017.

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Resource list:

https://diabetesjournals.org/care/article/38/6/971/37394/Current-State-of-Type-1-Diabetes-Treatment-in-the

https://www.cdc.gov/diabetes/pdfs/data/statistics/national-diabetes-statistics-report.pdf

https://beyondtype1.org/type-1-diabetes-statistics/

https://www.endocrineweb.com/guides/diabetic-neuropathy/diabetic-neuropathy-overview

https://diabetesjournals.org/care/article/44/2/301/35481/The-Evolution-of-Hemoglobin-A1c-Targets-for-Youth

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Attitude is Everything

by Ashley Harris for diaVerge Diabetes

Parenting a child with type 1 diabetes is a lot like parenting a child without type 1 diabetes...or at least it should be. We have a responsibility to teach our kids (chronic disease or not) how to make good decisions...decisions that are going to keep them healthy and happy. We need to set boundaries for our kids that are going to keep them safe. It's our job to ensure that we are raising kids that are confident and secure in who they are. Kids that can stand up for themselves and make the decisions that are right FOR THEM. We want to raise kids that feel empowered and in control of their lives. 

What can we, as parents, do to help our child that is living with type 1 diabetes feel empowered and in control of their disease and their life?

How can we ensure that we are not only providing our kid with the best physical health possible but that we are also fostering, within our kid, a healthy mindset and attitude towards living well with type 1 diabetes?

1) We can't allow ourselves or our child to feel like a victim of this disease.

Let's teach our child that THEY control their type 1 diabetes, it does NOT control them.

One mentality that is rampant within the diabetes community is that "diabetes has a mind of its own." This insinuates that there is absolutely no rhyme or reason to how blood sugars behave and perpetuates the idea that type 1 diabetes cannot be well-controlled. This type of attitude can do serious damage to our kid's perspective of their health. When we portray to our child that there is no way to make sense of their blood sugar, we are teaching them that they are nothing but a passive observer to the outcome of their health. There is nothing they can do, diabetes is unpredictable, they might as well not even try. 

Instead, let's teach our child that type 1 diabetes CAN be controlled! There are steps our kid can take to make understanding and predicting their blood sugar easier. Eating a low carb diet significantly increases the odds that they will be successful in determining the cause of blood sugar fluctuations. This is empowering for kids with type 1 diabetes because they no longer feel like their diabetes is a thing they have no control over.

They begin to see that consistent inputs produce consistent outputs. Success breeds motivation. As our child starts to believe that they CAN, in fact, control their blood sugar, they are motivated and encouraged to continue doing so.

2) Type 1 diabetes does not dictate what they choose to do and who they choose to become.

THEY are the ones in control of their life...not diabetes. We should be encouraging our kids to get involved in any activity that they may be interested in. Our child needs to know that having type 1 diabetes should not limit their activities in any way. Again, we must stress to our kids that the way for them to stay in the driver's seat, is by maintaining control of their diabetes. As long as they commit to keeping themselves healthy, there are no limits as to what they can do!

3) We must eradicate the idea that "fitting in" is the end all be all for our kids.

When something as traumatic as a type 1 diabetes diagnosis happens within our family, it can throw off our parenting game. As a type of defense mechanism, we look for any way that our kid can remain a "normal" kid. In an instant, we go from being the parent preaching "It’s okay to be different!" to the parent breaking our neck to prevent our kid from ever appearing different in any way.

The simple truth is, having type 1 diabetes DOES make our kid different. Instead of denying that truth, let's teach our child that being different is never something to be ashamed of. 

Many parents get hung up on the idea that their kid's self-esteem is going to shrivel up and die if they don't allow them to eat Cheetos and Little Debbies at school like their friends. I know that for my daughter, I hope that her sense of self-esteem is built on something more substantial than how similar she can be to her friends.

I want my daughter to be confident enough to stand up for herself and to make her own decisions about what is best for her. Maybe this means that she brings her own low carb cupcake to a birthday party or takes a different snack to eat at school.

Do I really want to teach my child that "fitting in" is more important than taking care of her body and her health? Absolutely not.

4) Commit to eating low carb with your child.

Show them by example that low carb.can be delicious and satisfying and that you don't feel deprived eating this way. We all know that our kids are much more likely to do as we do than to do as we say. Your child needs to see that you are committed to a healthy lifestyle right alongside them. Making sure that you have a healthy relationship with food is going to go a long way in helping your child to develop a healthy relationship with food.

5.) Diabetes Care is Non-Negotiable.

Parental fears can greatly influence how a child responds to diabetes. If a parent is scared to do an injection, a child will see that it’s something to be feared. If a parent gives a choice, anxiety will often build up and make the event more traumatic than it otherwise would have been. There’s a reason that nurses do vaccinations quickly and it’s over before you know the injection has even happened. It’s no-nonsense. Done.

We need to teach our children to do what they need to do to take care of themselves, in a calm and matter-of-fact manner, so they can move on with their day.

Raising a child with type 1 diabetes to be a confident and secure individual means being intentional in showing them that this disease is only a small part of them, it does not define who they are. It means showing them that THEY are the captain of their ship. It is up to them to make wise decisions that will keep diabetes from interfering with their plans. It means teaching them to strike a balance between acknowledging how diabetes needs to play into their decision making while knowing that THEY retain the power to steer their life in whatever direction they choose...and having type 1 diabetes can never take that power away from them.