Top 10 things we want people to know and understand about our life with T1D and Celiac

1. V CAN have sugar. She just needs to give herself insulin. In fact, sugar is not a concern in and of itself, it’s the amount of carbohydrates that we need to know about in order to dose insulin correctly. You can read one of my earlier posts here to learn about carbs and Diabetes. Since it’s all about carbs, sugar-free food does not equal carb-free food. Besides, who needs all those chemicals anyway?

2. For some strange reason, people are compelled to give us unsolicited advice* upon hearing that we have a child with T1D and Celiac. Pregnant women and people with Diabetes are like giant magnets for unsolicited comments. (I don’t even want to think about poor pregnant women who also happen to have Diabetes!) I will be honest with you: unsolicited advice is unwelcome. Most of the time people don’t really know what they are talking about, even if they mean well. And there are some people who say really stupid things. 

*I want to clarify that unsolicited advice is not the same as having a conversation, asking questions, and sharing resources that we can explore on our own time. Please always feel free to ask us questions and talk to us about our T1D and gluten-free life.

2. As of right now, there is no cure for Type 1 Diabetes and insulin is the only treatment.  Some individuals get misdiagnosed; others may experience prolonged honeymoon periods and may not need insulin for a period of time; yet others adhere to very strict diets that help reduce the amount of insulin needed. But miracle diets and exercise cannot fix a broken pancreas, nor can shamans, snake oil, cinnamon, denial or wishful thinking. You may have heard of Diabetes being cured in mice and dogs. It’s great for mice and dogs but does not help humans. Also, one never outgrows T1D. It is a life-long illness, until there is a cure.

3.  T1D is invisible but omnipresent. It requires 24/7 management and never gives us a break. We are always aware of it and always thinking of it. V pokes her fingers to check BG 6-10 times a day. In case you are wondering, it hurts. Changing her pump site or inserting a new CGM sensor hurts too. It is exhausting, stressful, and affects everyone in the family. We’ve mastered BG management enough to sometimes make it look easy. We don’t want to overplay it either. It is our new normal and we do what we need to do every day. But it’s never easy.

4. We are not worriers, and we are greatly comforted by knowing that T1D is manageable and that V can have a normal life.  But we are also well aware of  Dead in Bed Syndrome. We have gotten up in the middle of the night to make sure V is breathing and alive. Dead in bed is scary and real. No, most of the time we don’t think about it, but sometimes we can’t help but go “there”.  I don’t want to bring your attention to it to scare you, but to underscore the seriousness of this illness. I also realize that after reading this our friends may never again be comfortable or willing to have V over for a sleepover.

5. Celiac desease is not an allergy. It is an autoimmune disorder, much like Diabetes. There is no known cause. V will not have an anaphylactic reaction if she ingests gluten. In fact, she may have no symptoms at all, although in all likelehood she will have an upset stomach or mild nausea a few hours or a day later. However, any exposure to gluten leads to damage in the small intestine, so naturally we want to minimize cross-contamination and prevent exposure.

6. V is not a poor sick child. We don’t see her that way. She does not see herself that way either. Yes, she has serious dietary restrictions and a medical condition that requires constant attention. And yes, sometimes her Diabetes or Celiac make her feel sick or more susceptible to illness. She may need to stop and re-group sometimes, but day to day, it does not stop her from living a normal life. She is strong and resilient. She does not need special treatment, only thoughtfulness and consideration that you would extend to anyone else.

7. We are deeply grateful for everyone’s consideration, thoughtfulness and support. We have many wonderful friends who offer their support, go above and beyond to accommodate V’s needs for both T1D and Celiac when we gather together, and help her feel normal and included. Words cannot adequately express how much we appreciate it.

8. We are grateful that for now V has the “good” kind of “bad” diabetes. Her BG tends to stay stable through the night. There are very few unexplained lows, nor had she (yet) had a really bad low. Sure, she is usually on a BG roller-coaster, but it’s not as bad as what some other kids experience. She is not prone to developing ketones when she is sick or running high. It can all change at any moment. As she is growing, the changes and the hormones can wreak havoc with BG and we are bracing for what may happen in the future. However, right now we are grateful for any type of stability we can get.

9. We are grateful to be living in a time of increased Celiac awareness. There are so many GF options everywhere. GF diet nowadays is easier than ever, even if compared to just a few years ago. As much as the GF fad makes us cringe, we have to admit that it brought us many benefits and we hope that even when the fad fades away, GF awareness is here to stay.

10. We really, really want a cure for both Diabetes and Celiac. However, when push comes to shove, we want the cure for Diabetes first. Celiac is hands down the lesser of the two evil. I will end by posting a picture of an “about me” assignment V completed this week.

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3 responses to “Top 10 things we want people to know and understand about our life with T1D and Celiac

  1. Your concern regarding Death in Bed Syndrome is very real. Have you considered getting a diabetes alert dog for Victoria? I met one recently at Camp Wana Kura – these dogs are amazing!

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    • DADs are indeed amazing. Victoria wears a continuous blood glucose monitor (CGM) which alerts us if she drops at night and for now it’s working out well, though it’s not cute, cuddly or lovable 🙂 Ideally, a DAD would be awesome. However, DADs are expensive (understandably, as they are highly trained service dogs) and they are a big commitment and a lot of work, which is not something we can take on right now. However, things may change in the future.

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