What If I'd Worn My Coat…

CoatAfter my diagnosis, I didn’t question why our lives were turned topsy-turvey. We were too busy trying to learn the intricacies of the Diabetic Exchange Diet and getting just the right amount of the right types of insulin into a single syringe. Once the world righted itself (Although, truthfully, it’s still a little tilted on its axis.), the questions bubbled up, usually late at night when a twelve-and-a-half year old girl should have been sleeping.

“What if I’d worn my coat?”

And here’s where the bullet train of thought would go…

If I’d just worn my coat, then I wouldn’t have caught the cold that ended up being a bug that all my friends had. And then…

  • I wouldn’t have felt tired and napped in between school and dinner and then gone straight to bed.
  • I wouldn’t have slathered my face with a mini bottle of Clinique moisturizer at my locker in between classes.
  • I wouldn’t have had my teachers tell me that I didn’t have to raise my hand to go to the bathroom twice during each class.
  • I wouldn’t have drunk gallons of water and milk and even pickle juice to slake a thirst that was unquenchable.
  • I wouldn’t have written in my diary: “What’s wrong with me????”
  • I wouldn’t have made my parents wonder if I had cancer because I had lost so much weight and looked gaunt.
  • I wouldn’t have diabetes.

Then the bullet train would crash into the station.

Add the volatility of my blood sugars, despite our best efforts and great doctors after that blissful “honeymoon phase” ran its course, and you get a sullen teenager who gave up trying and lied about testing and taking insulin and had years of therapy until she stopped saying: “What if?” and started saying: “What now?” And here I am.

Research into the causes of Type 1 diabetes have told us a few things: it’s an auto-immune disease, the number of kids diagnosed it is rising (this article is a FWIW… I think the author goes out on a limb with the “too big, too fast” theory, but what do I know?), and there’s a genetic predisposition, but what we also know is that no one knows why some of us get it and others don’t. I think it’s like a lottery that no one wants to win. A Diabetes Hunger Games.

But this is what we do know:

1) It’s an auto-immune disease. (Yes, I’m repeating myself.) Our beta cells, the ones that produce insulin are attacked and killed. (In my head, it’s like the movie 300 when valiant Dilios yells: “To Victory!” and then everyone goes and gets killed off. All 300 hunky Spartans. My beta cells at least went down fighting.)

2) There may be a genetic predisposition, but often you may be the only one in the family. (Many of my extended family has auto-immune disorders of varying shapes and sizes, but I’m the only one with diabetes. I do know lots of people who have more than one child with diabetes or other family members, though.)

This article says:

Researchers have found at least 18 genetic locations, labeled IDDM1 – IDDM18, that are related to type 1 diabetes. The IDDM1 region contains the HLA genes that encode proteins called major histocompatibility complex. The genes in this region affect the immune response. 

3) Viral infections may trigger those who are genetically predisposed. The ever popular Coxsackieviruses are belles of the balls these days, with this quick scholarly (which is my way of saying “big words”) abstract pointing a very large finger at the Coxsackievirus B. I think this was what did me in. I really do.

4) Environmental factors might raise the hand to dish out diabetes to someone’s plate.

For identical twins, when one twin had type 1 diabetes, the other twin only had it 30%–50% of the time. Despite having exactly the same genome, one twin had the disease, where the other did not; this suggests environmental factors, in addition to genetic factors, can influence disease prevalence. Other indications of environmental influence include the presence of a 10-fold difference in occurrence among Caucasians living in different areas of Europe, and a tendency to acquire the incidence of the disease of the destination country for people who migrate.

5) Vitamin D deficiency. Yup. Like I wrote in a previous post on the importance of Vitamin D, a lack of it can impact the immune system. Researchers are now pointing to low levels of Vitamin D in newly diagnosed children and recommending Vitamin D supplements for all kids.

6) Because we’re healthier and cleaner. I know. What?! A study published yesterday by two researchers at the University of Malta says those countries with a lower mortality rate from infectious diseases have a higher rate of Type 1 diabetes. Professor Stephen Fava puts it out this way:

The global rise in type 1 diabetes is an unexplained phenomenon. Many suggest that the exposure, or rather the lack of exposure, to infectious disease when young might be linked to the development of autoimmunity.

This falls under the “hygiene hypothesis”, which pretty much says that the use of antibiotics and hand sanitizers kill off stuff that might have protected someone from developing diabetes.

7) Food choices. Gluten and cow’s milk have been loosely related to studies as a trigger for higher rates of Type 1 diabetes in children. Some believe it and some don’t.(Here’s an abstract a the cow’s milk study.)  (Here’s one that says gluten might trigger and here’s one that says it doesn’t) I chose to supplement breast milk with soy formula (no cow’s milk) and not feed my daughter anything with gluten until thirteen months of age. My reasoning? The research might be wrong, but it might be right, and she wasn’t missing out on anything at that age.

So, the upshot is that there is no definitive answers as to why Type 1 diabetes rears its ugly head. We just don’t know. Until we do, I don’t think we’ll be able to stop it from happening – or even curing the people who have it.

All I know is that the coat wouldn’t have made a damn bit of difference, but I wish I still wore it.

David Donald Doo Dreamed A Dozen Doughnuts And A Duck-Dog, Too.

Dr. Suess is big in our house right now. The tuck-in process includes “Brush Teeth!”, “Binkie!” (the same purple fleecy blanket every.night.since.November that I have to wash in between naptime and bedtime), and “Book!”. John reads a random selection chosen from our ever expanding library for the wee one, but I get a secret delight when a Dr. Suess book shows up in his hands, especially Dr. Seuss’s ABC’s.

The brilliant Ted Geisel says that D is:

David Donald Doo dreamed a dozen doughnuts and a duckdogtoo.

And it’s also that vitamin that is getting a lot of play with the research world and with a lot of us, too.

Up until last March, Vitamin D was just the “sunshine vitamin” and an additive to my milk. No idea what role it played in my body and I assumed that I was getting enough of it. Au contraire, mon frère.

Last January, in an off-hand remark to my endo, I said I was experiencing horrible pains in my joints. “My family’s arthritis gene is kicking in.” I also admitted that I was exhausted and wasn’t sleeping well, but simply assumed that it was just a consequence of having an infant in the house. He tapped his pen on my chart and asked: “Are you getting charlie horses?”

I gaped at him. “How did you know?”

He scribbled on a lab sheet. “You’re probably Vitamin D deficient. We’ll check your levels and get you back to normal.”

I didn’t go out in the sun very much, wasn’t eating a lot of fish and eggs or drinking fortified milk (I’ll admit, I was living on Diet Coke and whatever I could gobble during the day. Eating healthy was for the baby, not for me.) All of these things, plus the fact that I am diabetic, put me at risk for Vitamin D deficiency.

When the lab results came back, his nurse informed me that I was suffering from “severe Vitamin D deficiency” (like, almost into rickets territory) and that I needed to go pick up a prescription stat. 50,000 IU every day for two weeks, then every two week, then one a month. Mega dosing.

Sure enough, once I was back to normal levels, the joint pain went away, I began to sleep better, and no more charlie horses. Unbeknownst to me, another symptom of Vitamin D deficiency is poor concentration. It explained why I couldn’t keep a thought in my head, blaming it on “mommy brain”.

A Vitamin D level is now permanently added to my lab test list. I won’t let it get back into the danger zone. Why? This article: Low Vitamin D Levels May Raise Death Risk in Type 1 Diabetes.

Recently, low levels of vitamin D also have been linked to a higher risk for heart disease and death. Some studies are also looking at possible links between vitamin D and diabetes complications such as kidney and eye disease.

And the kicker:

Patients with type 1 diabetes and very low levels of vitamin D may be more likely to die than those who get enough vitamin D. However, the reasons for this are unclear.

What’s another pill? Nothing in the grand scheme of things…

But it’s not just taking Vitamin D after diagnosis that helps in the long run. According to this article (and a few others), taking Vitamin D can lower the risk of developing  Type 1 diabetes. 4000 IU each day for an adult and this study gives a recommendation of up to 1000 IU daily for infants and children. For anyone (diabetic or not) planning a pregnancy or currently pregnant, this very scholarly article plainly states:

Vitamin D deficiency in pregnancy probably increases the incidence of autoimmune diseases, such as Type 1 diabetes, in genetically predisposed individuals.

So, my question is this:

Why does this vitamin play a crucial role in the health maintenance of Type 1 diabetics and in the possible prevention of autoimmune disorders? What makes it so special? Anyone know? I dream about finding the answers…

And so does David Donald Doo.