This is not a low carb blog. My family is not a low carb family. I have a son who has type 1 diabetes. His A1C has been between 6.5 and 7.5 since diagnosis over 8 years ago. He eats pancakes with regular syrup, can eat a whole cucumber in a sitting, and even has cereal for breakfast (or dinner) sometimes. Again, this is not a low carb blog.
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Low carb works for a lot of people
It’s a very simple concept. People with T1D need insulin. Too much insulin can kill you. It’s difficult to accurately calculate how much insulin to give.
That means, if you eat low carb, you can use less insulin. Less insulin means less room for error. Smaller waves in that CGM line. Sleeping at night. Getting off of the roller coaster.
It means controlled, non-diabetic blood glucose numbers. Feeling healthy. Being confident that you’re avoiding complications.
LC is a completely valid management option for T1D. But, it is by no means the only management option.
And while I have several personal reasons why our family doesn’t eat low carb for my son’s type 1 diabetes, that’s not what I want to talk about.
My son was 2 when he was diagnosed with T1D
For the first few years after he was diagnosed, I didn’t know anyone else who had dealt with T1D. I had no friends or family who knew much about it. I didn’t reach out to organizations or local T1 groups. And it didn’t even occur to me to look online for other parents of type 1 diabetics.
I was in a bubble. I learned everything from our diabetes team and didn’t really question any of it. Unfortunately, I wasn’t the type to reach out or look up more information, so I had no idea how complex T1D really is.
But then, I started to join Facebook groups for people dealing with T1D. I heard about all sorts of things. Dosing for protein and fat, what a standard deviation is, the effects that things like hot showers, baths, or hot tubs have on blood sugar levels. I read about T1D and sex, periods, drinking. All sorts of things that had never occurred to me before.
One thing I didn’t hear about was low carb diets.
My introduction to low carb
One day, in one of the Facebook groups I was in, there was a post. A mom was talking about an experience she had where her son needed glucagon. She was essentially reminding parents that we should always have glucagon handy just in case something happens. Especially for those of us who have never had to use it.
It was a brave post. This mom explained the situation that led up to her son’s seizure. Beyond Type 1 later turned it into an article if you want to read about their story.
In no time at all, her post had been taken and shared into low carb groups. (I didn’t even know that was a thing at this point). Comments were being thrown around about how she was a bad mom for allowing her child to eat carbs, “what did she expect?”, that her children should be taken away from her, and so on.
Now, to someone like me, who has been taught to eat like we always did and dose for it, this whirlwind of toxic comments seemed completely off base and unnecessarily attacking the mom.
It’s like hearing about the death of a child and listening to the people who go, “well, where was the parent? Why weren’t they keeping a closer eye on their child? That would never happen if it were my child.” In case you’re wondering, I hate when people say things like this, no matter the situation. If you think you’re better than the person in the story, you’ve entirely missed the point of the story and you’re too self-involved to have anyone explain it to you.
Anyway, that was the first time I heard about low carb diets. Specifically, LCHF, Dr. Bernstein, and type 1 grit.
It seemed like a low carb culture
The admins of the low carb groups and pages were not only leaving negative posts and comments about this family up, but they were encouraging sharing the story and bad-mouthing the mom. Frankly, this completely blew. My. Mind.
I don’t care how high your pedestal is, having respect and compassion for other people is important. And many of the most vocal in this subsection of T1D didn’t seem to have either.
It became apparent that many of the people with these kinds of comments had been kicked out of all of the “mainstream” T1D groups because they had consistently had this attitude of putting others down.
It was the first time I had seen a clear divide within the T1D community.
And that really sucks
Because like I said, low carb is a valid management option. It’s too bad that the message is delivered so poorly by so many people.
The rift between low carb and moderate to high carb is very big.
People who haven’t changed their diet due to T1D will get up in arms if someone asks for a low carb recipe.
Low carb people seem to feel the need to defend their choices by putting down people who don’t do exactly what they do.
I’ve tried following low carb pages. They’re just so defensive all the time. Instead of simply being a feel-good read about someone’s win, it is always littered with “I told you so’s” and constant self-validation.
There are never any negative posts. Posts about having a hard time with something. The notion is that low carb is perfect 100% of the time for 100% of people, and that’s simply not realistic.
But that’s what gatekeeping does
It turns people off who would normally show some interest.
“Oh, you like the same show as me? But you’re watching it for the wrong reasons. Or not fast enough. Or you aren’t into it enough. You’re not a real fan. I’m a real fan.” <— gatekeeping. A person that most other people aren’t interested in being around. I still like the show, I just don’t want to watch it with you… or talk to you about it… or about anything. Only other people who think exactly the same way as the gatekeeper will be interested in what they have to say.
“Oh, you heard about low carb and want to learn more about it? If you eat fruit ever again or ask about carbs or post a picture of carbs, you can’t be in our group. You have to eat no more than 30 grams of carbs a day if you want to learn about low carb.” Sound similar? Yeah, I think so too.
But not all people who eat low carb think this way. Unfortunately, many of the most vocal people do though. And every time I consider looking into low carb again, I get bombarded with those voices and remember the mom from the subway getting attacked by her fellow d-parents. And mentally, I’m not prepared to be around that.
Scolding people for eating an apple. Shaming parents for wanting to give their child a treat once in a while. Acting like the only two diets are the 6-12-12 low carb diet or constant fast food and donuts. Believe it or not, most of us land somewhere between those two extremes.
Still, I see you
T1D threw you into a hell you had never thought possible. And Dr. Bernstein’s methods saved you from that hell.
Maybe it was soon after diagnosis and that’s basically all you know. Maybe it took a lot of trial and error, sweat, and tears for you to get there.
And you want to shout it from the rooftops. You want to save other people from the hell that T1D brings. I get it.
Sometimes you say it in an abrasive way, probably because you, too, have had to defend your management choices to the world. But I can see that you care.
You care about your child. And my child. And all of the children and adults with T1D. You want to help them the way someone else helped you.
Even through the intensity of your words, I can see all of that. But not everyone can. Many people will just see your words and don’t care what the intention is behind them.
This is not a low carb blog. We are not a low carb family.
But low carb is a perfectly valid T1D management option.
And maybe I’ll give it a real try one day.
You can absolutely eat low carb and have a non-diabetic A1C, straight lines on your CGM, and a very tight standard deviation.
I’ve seen it proven with many people.
Of course, there are also other ways of producing those same numbers without changing your diet. I can think of 4 of them just off the top of my head.
T1D isn’t a one size fits all disease. Different people have different situations. Different health conditions. People have different levels of education, stress, and abilities. Maybe low carb is the best management method for you. Maybe one of the others is. Or even a mix of all of them. We all need to find what works best for us and our families.
In the meantime, I’m happy for everyone who has found a way to improve their numbers, mental health, and physical health.
If you’re one of those people, kudos for finding what works for you! I sincerely mean that.
And I hope, in turn, you’re wishing everyone else the best of luck to find what works for them.
~ Leah
As I mentioned, low carb is a valid management option. If you’re interested in Dr. Bernstein’s Low Carb Method, you can get his book here (US), or here (Canada). Whether or not you want to try low carb, the book has a lot of “aha” moments about T1D and how it works. Make sure you head over to the Carb Counting Mama Facebook page and “like” it for more T1D posts!
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