I met Gina through the Celiac Sprue Association, Denver Chapter 17. She helped me get involved in volunteering at last years ‘Incredible Edible Gluten-Free Food Fair™!’ She has been part of CSA for several years and is a member of the Board. She has a lively personality and is willing to share her thoughts with others. I am so excited that she was willing to sit down with me and talk about her experiences of living with Type I diabetes and Celiac disease. I hope you enjoy this as much as I did. The overall message I took away, was that neither Diabetes nor Celiac disease define who Gina is, because she is so much more and has never let either one stop her from living the active life she was meant to have!
Jenn: Hi Gina! It’s great to be with you today and to have the opportunity to get to know you better. So, tell me…how old were you when you were diagnosed with Type I diabetes?
Gina: I was 17 years old.
Jenn: And how old were you when you were diagnosed with Celiac disease?
Gina: I was around 32.
Jenn: Please tell me what your experience was when diagnosed with diabetes?
Gina: That was October of ’75, so over 35 years ago. I had the traditional symptoms. I felt dead dog tired, no energy, had to go to the bathroom every 15 min, and I always remember having this incredible, incredible thirst. The only time I felt like I had moisture in my mouth, was when I had liquid in it.
Jenn: Were you having those symptoms for a long time before being diagnosed?
Gina: Only for a couple of weeks. I remember Oct. of ’75 just feeling extremely tired. I would come in and just be walking around like a zombie. So, I had the traditional symptoms, and went through a lab test that confirmed it. At the time (35 years ago) one was usually diagnosed with juvenile diabetes much younger, so it was a little unusual being 17.
Jenn: Does diabetes run in your family?
Gina: My grandfather had diabetes, but he got it much much later in his life. No one else has had diabetes or Celiac disease in my family.
Jenn: What was your reaction when you were diagnosed?
Gina: I actually had a friend who was Type I since he was about 12, and I remember when I was feeling so sick asking him about it. I sort of self diagnosed first by using one his test strips and then went and had the actual test. I was so sick right before being diagnosed that when I got diagnosed and they put me on insulin, I immediately felt better. Similar to Celiac disease, once I started the gluten free diet, I felt better very quickly.
Jenn: Was it difficult learning to give yourself injections?
Gina: Well, they teach you on a grapefruit. I think they still do this today. This nurse came in looking very stern and plopped down the grapefruit. She had the syringes with saline to pull from the vial and stick it in the grapefruit. This helped me learn how to measure the insulin, but injecting into the grapefruit is not the same thing as injecting it into some part of your body (laughter). Back then needles were quite a bit longer compared to the needles they have now. Now they are the size of about your pinky nail, but back then they were almost the size of your first knuckle. I think the biggest misperception though is “take a shot, and you don’t have to think about it anymore.” You quickly realize that it’s 24/7. I think people sometimes think that all it entails is watching what you eat, take your insulin, exercise and don’t eat sugar. Yes, that’s the treatment for it, but is that completely realistic? You can do all these things, and then test your blood sugar and it’s still high or too low.
Jenn: You’re right. My fiance also has Type I diabetes and sometimes the problem is that his blood sugar goes too low, and then he needs sugar. For example, if he thinks we’re going to eat soon and takes his insulin, and then something happens that causes us not to eat on time, his sugar will drop, and he will have to find something with sugar in it to bring it back up.
Gina: Definitely, it’s not just keeping your blood sugar down, but also not letting it go too low. I would have to say that somewhere between 5-10 years after diagnosis I decided that I really needed to get a handle on it. You can’t change the diagnosis or the situation, but what you can change is your reaction to it. I’m pretty spontaneous. I like to just do things whenever I feel like it. So, I had to figure out a way to make living with diabetes match my lifestyle.
Jenn: So, you had to learn how to live spontaneously while still managing diabetes and being prepared?
Gina: Yes, also, times have changed, but back then the diet was very restrictive. Can you imagine being a teenager and being told you can’t do something or eat something? It’s a maturity thing.
Jenn: Did it take you awhile to learn how to manage it well?
Gina: I think when I actually learned how to manage diabetes well was when I decided I didn’t have to say “no.” Sometimes you have the perception of “cheating” if you have something you’re not supposed to. If you want a candy bar and someone says you can’t have it, what’s the first thing you want to do? You want to have it even more. When you’re told you “can’t” do something, you find yourself sneaking around and doing it anyways. I finally made the decision to give myself permission to eat what I want. Once I did that, I didn’t want that candy bar anymore because I CAN have it. Or if my husband has an ice cream or something, I will allow myself a taste just to satisfy my craving, but that’s all I need, is just a taste. It satisfies my need to have it. It also satisfies my need to make my own decision, where I can say “Yup, that was MY decision.”
Jenn: I really like that. You give yourself permission to make the choice. I feel the same way with Celiac disease because, I feel like people say to me, “You can never have gluten again!” And I have found myself thinking, “Well that’s not true, I sure can if I want to….I choose not to!” I recognize that gluten causes damage and I may not feel good if I eat it, but the ability to make that choice is still mine, and no one else’s. It’s like smoking, everyone knows it’s bad for you, but people still choose to do it. However, there are cases of life threatening food allergies where there isn’t a choice.
Gina: Giving myself permission to make my own choices has helped me to manage diabetes and Celiac disease better.
Jenn: Absolutely, I do feel at times that scare tactics are used to force people with Celiac disease to be gluten free. But the truth is, scare tactics aren’t the answer. I don’t eat it because I know it makes me feel bad, but knowing that I am making that choice for myself, and no one else, makes it easier. I am well aware that I ate gluten for 28 years and it didn’t just kill me, so I know if I eat gluten now, I’m not going to just drop dead, even though that’s sometimes the image I feel is portrayed. But, I understand that it can cause me long term damage and health problems that I would prefer not to deal with, so I choose not to eat it.
Gina: I think some diabetes and celiac doctors do operate on fear. Threatening me with all these awful things that could happen and using fear tactics, may work for some people, but don’t work for me. It’s all about just learning to make better choices, but it’s still my decision.
Jenn: So, by the time you were 32 and got diagnosed with Celiac disease, did you feel you had a good handle on your diabetes?
Gina: I would say yes. I think it’s a constant journey and constantly re-evaluating what you need to do to be who you want to be.
Jenn: So, how did that impact you to find out that not only did you have Diabetes, but now you have Celiac disease? How did you find out?
Gina: I had emergency abdominal surgery, and when I went in for a check up, my endocrinologist said, “something’s not right here.” I jokingly reminded him I had recently had surgery, and he said, “well you don’t look quite right, you look very tired.” But he told me to go back in a couple months to follow up. When I went back, he said, “Oh no, there’s something wrong.” The big red flag was I had severe anemia. He said my definiciency was so bad, I should have almost be dead. So, he immediately put me on iron tablets. He tried a couple of different things and finally gave me some options of what might be wrong, one of which included Celiac Disease. So, after nothing helped, he sent me in for a biopsy, which came back positive. They basically just gave me a pamphlet stating here’s what you “CAN”T” eat.
Jenn: How hard was it back then to find food that was gluten free?
Gina: Well that was 20 years ago and it was extremely difficult. I pretty much went off of bread because the gluten free bread was like a hockey puck. I started experimenting with some other grains, but the amount of choices was very limited 20 years ago. I just started having to eat very differently. I ate fruit as my carbs and I found corn tortillas. But, now days, the bread has gotten much better, so I’m back to sandwiches! So, really when it comes to Celiac disease vs diabetes, I would say Celiac disease is more FRUSTRATING and diabetes is more CHALLENGING. Celiac disease impacts your social life more as far as eating with others, but diabetes requires constant monitoring and can have more immediate health complications.
Jenn: So, how did the diagnosis of each affect your social life? Were you already married?
Gina: When my husband and I got married, I had already been diagnosed with diabetes, but it was only about a year after we got married that I had the emergency abdominal surgery and was later then diagnosed with Celiac disease.
Jenn: How was the transition in your household to being gluten free?
Gina: Well, Jim eats more gluten free food now, so when we have a meal at home, it’s usually 99% gluten free, but he has his own bread.
Jenn: Was it difficult to communicate your needs to Jim?
Gina: No, Jim was willing to try different things out. He would go hunt and gather and bring new foods home. But, if we go to a restaurant, he’ll order whatever he wants.
Jenn: How did the diagnosis of Celiac disease affect your friendships?
Gina: Well, it was a bit of a damper initially. I think the hardest place is at work because people want to go to places like Subway. Back then, there weren’t a lot of options out there, but now it’s much better and there are more options. If it’s a friend, they will ask me if certain places are okay to eat at before hand.
Jenn: How comfortable are you talking about Diabetes and Celiac disease?
Gina: I’m very comfortable, but very few people at work know, and that’s just because it’s not who I am. I’m not Gina the diabetic; I’m just Gina who happens to be living with diabetes. I’d say a handful of people at work know. I don’t want people to identify me that way. I want them to get to know me first, and if it happens to come up, it comes up.
Jenn: So, do you feel like you have to talk about having Celiac disease more than about having diabetes?
Gina: Yes, I would say more people know I have Celiac disease than know I have diabetes. At work functions or going out some place, if you want to be involved in the after hourse social gatherings, it comes up more. Plus, people seem to look at Celiac different than diabetes since it’s controlled completely by diet. With diabetes, there are more preconceptions about what someone can and cannot do.
Jenn: Do you think there is more of a negative stigma attached to diabetes than Celiac disease?
Gina: You bet!
Jenn: What do you think people’s perceptions are about having diabetes?
Gina: People think you can’t do certain things, like go out and be spontaneous. Employers might be more concerned about health care costs and sick days. They might think you are going to take more days off than other people. I get people who will say, “Oh, I wouldn’t have thought you had diabetes!” And I ask, what would you expect someone with diabetes to look like, and they say something like, “more sickly and unhealthy.”
Jenn: I think this is such an important point, for people to understand that having a diagnosis of Diabetes or Celiac doesn’t mean that you can’t live an active and fulfilling life. That you’re not Gina the Diabetic.
Gina: Exactly, having diabetes for me is just an aspect of me, like having brown hair.
Jenn: Yes, and you play basketball, and have a job, and you’re a wife…and so many other things that have nothing to do with having diabetes or Celiac. It doesn’t define you.
Gina: Right, if it comes up in conversation, I’m happy to share my story, but like I said, I’m just Gina.
Jenn: So would you say that diabetes doesn’t hinder you and hasn’t prevented you from doing what you want.
Gina: Nope, it doesn’t hinder me, sometimes there is just a little bit of extra planning that does need to be involved. But I always try to do or not do things because I want to or don’t want to, and not use diabetes as a reason to not do it.
Jenn: That’s so important, because for so many people a diagnosis starts to define them. What has helped you to live this way?
Gina: I think giving myself permission to fail and not being so hard on myself for not being perfect. When you try so hard to stay within perfect numbers, and you test your sugar and you’re still high, that can be very disappointing. Sometimes, you just want to take the meter and throw it out the window. But, instead, I give myself permission to fail. If I take a reading and it’s a 100 or 120, I give myself an internal high five. But, if the next time I test I’m over 200, I don’t over react like I used to. If I find I’m having a common reading around the same time each day, then I try to see what kind of pattern is going on and make small adjustments to help level it out. But, I don’t over compensate. I try to bring it back to my goal a little at a time. Sometimes it can be like a roller coaster, and you eventually need to get off. But if you are swinging between 250 and 200, work on bringing it to 200. Reduce the variation. Once you’re averaging 200, then work on 150 and so on.
Jenn: Were you hard on yourself at first?
Gina: Yes, because you’re told this is where you NEED to be or you’ll suffer all these complications. So you try, but if you go in and your tests aren’t coming back right where they should, you immediately feel like a failure and feel like giving up and not trying at all. This is why I had to give myself permission to fail and to choose. This has helped me to live my life in a way that works for me.
Jenn: I love what you say about giving yourself permission to fail, because if you don’t, you’ll feel like giving up because somewhere along the way you will make some mistakes. There’s a huge learning curve and making changes in your diet and lifestyle takes time. Just knowing what to avoid doesn’t help you figure out HOW to avoid it. That part takes time and effort to learn, and making mistakes is one of the ways that you learn.
Gina: The bottom line is, you have to find what works for you to live your life the way that fits you best.
Jenn: Absolutely, for me, I had to give myself permission to make a gradual change. I was diagnosed right before the holidays, and I have to be honest and say, I ate normally during my first holiday season after being diagnosed because I was still learning, I was out of town and out of my element with family. I didn’t quite understand yet, and so neither did they. Once I got back though, I was able to make the necessary changes and I don’t knowingly eat gluten anymore. But, it took time to get off it completely, and that’s okay, because now I’ve done it, I’m good at it, and I feel great about it, because it was my choice and I did it at my own pace. And, the truth is, if I want to eat gluten I physically can, I choose not to for myself. Beating yourself up for making mistakes will only make it harder to be successful.
Gina: Yes, and focusing on what you can eat instead of what you can’t is also very helpful. I had to restructure my life so I can do what I want despite diabetes. I hope to write a book one day about living with diabetes and celiac disease to share with others, so that they don’t let their diagnosis define them.
Jenn: I think that would be so great! People need that kind of inspiration, and I think this interview is a great catalyst for spreading your wisdom. So, what do you think is one thing you would say to someone living with diabetes and celiac disease?
Gina: I would go back to this, “If you can’t change the diagnosis, change your reaction to it.”
Jenn: Thank you so much for your time! I’ve learned a lot today from you and feel that you can truly be an inspiration to others.
[Editor’s Note: Reprinted from January 11, 2011.]