Another “myth-busters” post:
There are a lot of things about diabetes that are taken as “gospel,” both by doctors and patients. But at the JDRF Capitol Research Summit last month, I learned that many commonly accepted beliefs about diabetes haven’t actually been proven by medical science with convincing evidence (far beyond ‘you got it because you ate too much candy.’) Eminent scholar Dr. Mark Atkinson was pretty adamant that “these ideas need to be put to pasture.”
Here are five of those “common medical myths” you may have heard, and the truth behind them, according to Dr. A:
1. Type 1 diabetes is caused by a virus
Apparently there is little evidence to support this idea. While it’s true that many people may have a virus prior to diagnosis, Dr. Atkinsons says: “There’s never been a virus that’s been identified that explains the vast majority of most cases. What we do think is that at the time of diagnosis, for some people, they are on the edge of a cliff. If you get a viral infection it tips you over the edge, but it was kind of destined to happen.” So your immune system itself had to actually be pre-disposed to target your beta cells. It was just waiting for the “bat signal,” so to speak.
2. The honeymoon period is the only time the body makes insulin
Some new studies, such as Dr. Atkinson’s JDRF/NPOD study, show that up to three-quarters of patients still have a few beta cells left, no matter how long you’ve had diabetes. That means whether you were diagnosed six months ago, six years ago, or sixty years ago, you could still have beta cells plugging away. Of course, the amount of beta cells that currently still active in most PWDs are too minimal to do any good, but it does hold promise if research on diabetes autoimmunity is ever successful. Just maybe, these beta cells could be regenerated in humans!
3. There is something in the environment that causes diabetes
“We really don’t know what causes type 1 diabetes,” Dr. Atkinson says. “There are many, many things in the environment that could lead to diabetes.” Over the years, researchers and parents have tried a variety of different ways to identify what environmental factors could cause diabetes, since we know for sure it’s not 100% genetic. Everything from infant cereals to breastfeeding to vitamin D deficiencies to immunizations have been targeted in the environmental investigations, but no convincing evidence has surfaced. Many researchers now believe it might be a combination of several environmental factors rather than just one thing. Dr.
Atkinson’s advice: “If you’re thinking, ‘If I just breastfed longer or not used rice cereal as soon,’ don’t beat yourself up. That’s not the cause.”
4. Type 1 diabetes usually happens in kids
Not so, says Dr. Atkinson. A lot of people think the majority of cases occur in childhood or adolescence (although we know that more folks are getting diagnosed as adults, like Amy). What is interesting is that the average age now trends toward the mid-30s range. “(Many) adults are misdiagnosed as having type 2 diabetes, but they have type 1,” Dr. Atkinson says. “Diabetes can be diagnosed at any age.”
5. Type 1 diabetes is just one disease
Today's myth-buster
Type 1 diabetes is more than one disease? Well, with new acronyms like LADA popping up, it’s not surprising that are as many pathways to type 1 diabetes as there are to type 2 diabetes. “There’s a lot of variety in the way individuals come to the point of requiring daily insulin,” Dr. Atkinson says. There are a number of disorders that look like type 1 diabetes, where people need to take insulin.” In the past, conventional wisdom said you needed autoimmunity to determine whether or not you had “classic” type 1 diabetes, but nowadays, Dr. Atkinson explains, it seems there are a small portion of people who look and act like they have type 1 diabetes, but do not have autoimmunity.
On a personal note, I admit I was raised to believe that my diabetes was caused by a virus, because I was diagnosed with type 1 diabetes a mere three weeks after a major Christmas break flu. It took many years and many diabetes conferences before I finally put the challenging puzzle of diabetes together and realized that my body was already on the path toward diabetes. Any of these myth-busters surprising for you all?
Like Amy and Manny, I also have LADA, diagnosed at 48. Myth #4 is the one I would really like to be rid of. Too many of us have to fight too hard to be correctly diagnosed. I especially wish healthcare providers (GPs, RNs, etc.) would be educated. Too often they stubbornly insist that this is what they were taught and so they must know better, evidence to the contrary. This sets too many of us up for failure.
Would appreciate more clarification on point 4. Are you saying that that the average age of Type 1 DIAGNOSIS is mid-30s, or that the average age of people who have Type 1 is mid-30s? Would be surprising to me if it were the former.
I have been told many of these things, especially as a child (dx’d at age 11). Eg, that I ate too much candy and that is what made me diabetic. This by my grandmother who was a nurse! That hurt a lot and inspired a lot of guilt for years……
@Kristin: Yes, they meant type 1 diabetes diagnosis. Sorry about that!
@Sysy: I think we’re all on the same page. It’s not *one* thing, and it’s a few things, but that doesn’t mean we shouldn’t figure out what some of these things are. An environmental factor may have one effect on one person, and another on another person. But that’s just my POV!
About number 3, if many researchers believe more than one thing in the environment is cummulatively becoming a possible cause, then I wouldn’t say that number 3 is a myth, I’d say it’s only a suspect and that it’s not as simple as “breastfeed your child and they won’t get diabetes”. I talked with some doctors recently who specialize in autoimmune diseases and they say that If it’s true the environment is messing with our immune systems, then we should probably acknowledge “the tipping point” involved. Meaning, if we do our best with data we have so far, maybe we’ll nearly avoid the point where diabetes is triggered in at least some cases.
My daughter was diagnosed with Type 1 diabetes just weeks after an illness. I’ve never thought that it *caused* her diabetes, but I’ve always thought that it was kind of the last straw that brought it to the surface. I agree that maybe she was “on the edge of a cliff.”
My husband and I had several “what ifs.” I couldn’t breastfeed her for long (for several reasons). We used infant formula. We used baby bottles that were later found to contain BPA.
We also fed her a mostly vegetarian diet of largely organic foods, gave her lots of sunshine and fresh air, and did all the other things we thought were good for her.
But we have to have the philosophy that we did what we could given the knowledge we had at the time.
On another of the topics, our endo told us at her last visit that Q is still honeymooning and likely still has some working beta cells based on her low basal rates and lack of spikes after some meals. (We found that out while doing the iPro.) I assumed, as so many others, that the beta cells were completely destroyed within 6 months or so. I’m glad to hear that there may be some functioning cells for years and years.
Allison,
Nice post! Unfortunately not quite as entertaining as the “Mythbusters” show – nothing was blown up!
Anecdotally, I was sick with the flu in college and required an “alcohol mat” to keep my temperature below 103F prior to my “official” diagnosis some 10 months later. Of course, as a first time away from home college freshman, I had lots of other stresses at the time, so the “cliff” idea resonates with me.
Fair Winds,
Mike
Wait, today the average age of a person diagnosed with T1 diabetes is mid-thirties?! That means that HALF the people being dx’d as a new Type 1 today are over 35′ish? Wow! That’s a LOT! I was under the impression that T1 newbies under 20 still made up the majority of new T1 diagnoses. I am clearly stuck in a dated mythology! Thanks!
@T1 in Boston: Well, mid-30s precisely is still an estimation, but I’d wager pretty true. Every day I hear more and more folks over the age of 18 who are being diagnosed with type 1. Couple that with people who are perhaps diagnosed with type 2 first, then it makes sense that it could be a majority. Perhaps not exactly half, but I don’t think children make up the vast majority of diagnoses anymore.
My type 1 came after I also had a bad case of the flu and now after 30+ years I was interested to see someone also mention a virus as the possible cause. I am the only one in the family on both sides with it and my life has still be as active as it would of been becasue I try to maintain exercise and proper eating. What is so concerning is the rise in type 2 and the obesity issues that are facing this country in the coming years. Statistcs are showing diabetes and breast cancer reaching terrible levels.
On myth #4, it is true that there has been an increase in the number of late onset diabetes (LADA) that that is diagnosed in people over 18 years of age in recent years. Research is ongoing as to the causes — one of the most popular as mentioned is environmental or a trigger such as a virus that causes the body to ‘fight’ its own cells such as those that are produced in the pancreas that make insulin (autoimmunity). As you’ve probably already noticed most of your endos have tested you for various autoimmune diseases such as Celiac (Tropical Sprue), thyroid abnormalities as studies are showing an association betwen type 1 diabetes and autoimmune disorders such as these.
i’m w/ Mary Decter. I was hospitalized w/ DKA (diabetic ketoacidosis)
@ age 48 . Diagnosed with T1 but treated as T2 (with insulin). 2-1/2 yrs later, diagnosis of LADA. Even them, they ( my D team) still weren’t sure.
In my early research on the Web, I found out that autoimmune diseades run in pairs. Mine is overactive thyroid, now under-active & T1. Found out both have a genetic basis on Mom’s side of the family. How about that?
Amy, thanks for the mythbuster article. Mucho encouraged by it.
I breastfed my son who was diagnosed with T1 for 2 1/2 years so the breastfeeding argument doesn’t fit our lives either. I had heard that a trauma such as an accident can trigger it too. My son was involved in a snowboarding accident and was diagnosed six months later. Has anyone else heard that as a possible trigger?