Monthly Archives: August 2013

What the Gluten?!

The interview with Eugenie was really awesome to share with everyone—I was particularly excited because it gave me some insight into what it is to travel in another country with diabetes supplies, considerations to think about, and it supported some things I’ve already done to prepare, validating the amount of effort I’ve spent (which feels great!). There was an additional point of interest that I had not expected: Eugenie’s comments on trying a diet that avoided gluten. I was intrigued, and reached out to some of my gluten free (GF) friends, to hear about their experiences and insights! And here is what I found!

The people:

Sara: 18, started GF in 2004 after being diagnosed with T1 and Celiac

Lydia: 22, started GF August of 2012 after suffering from small, but not insignificant, health problems (tiredness, frequent stomachaches, bloating, mysterious aches and pains)

Jen: 20, started GF fall of 2007 after being diagnose with Celiac disease

Summer: 19, started GF summer of 2012 after being diagnosed with Crohn’s disease (GF diets help reduce symptoms)

Question 1: Tell me about your overall experience with a GF diet?

Sara: When I first started a GF diet (9 years ago), it was very difficult, as the GF industry had not become popular, so we had to order food from Canada that tasted like Styrofoam. I was forced to mainly eat vegetables.

Jen: Within the past 3 years, the GF industry has exploded. Now many restaurants are aware and even popular brands like General Mills and Betty Crocker provide options for GF.

Lydia: Now, it’s actually not that hard. I’m a GF vegetarian, so you’d think my options would be limited… but, I can substitute GF pasta and bread products when I want them. I’ve gotten into baking and even made my own GF pasta and gnocchi!

Question 2: What physical effects do you experience with a GF diet?

Sara: At first, I had a really hard time staying completely away from gluten… sometimes it was a matter of not being able to resist Oreos, and sometimes I wasn’t aware there was gluten in so many things, like red food coloring. At first, I would barely notice the difference, so I ended up eating a lot of gluten. After about a month of eating gluten, I ended up in the hospital with some serious side effects of not being on a GF diet. The result has been that I am now much more sensitive, so I have to be very strict—any contamination can send me into a puking fit and eventually to the hospital with DKA (diabetes ketoacidosis).

Jen: Similarly, removing gluten from my body didn’t change much beyond not getting sick anymore.

Lydia: When I started, I didn’t know what would happen to my body on a GF diet, but I have found that I feel much more rested, and my energy is way up.

Summer: I believe GF diet is a main factor in what keeps most of my Crohn’s symptoms away. Some added benefits of a GF diet include: stopping having skin breakouts, the puffiness under my eyes is greatly reduced, I have more energy, and I feel “light”… not like a weight thing, but more of a feeling.

Question 3: What do you classify as gluten—what do you avoid?

Summer: All grains in general, so soy, wheat, rice, corn, and oats.

Lydia: Wheat, barely, rye, malt. Although barley malt hasn’t made me sick… I wonder if I’m only allergic to wheat and not barley and rye.

Sara: I stay away from anything risky because my sensitivity to gluten is so high. I absolutely cannot eat wheat, rye, barley or oats. What makes it difficult is that gluten can be in so many things: red food coloring, a lot of preservatives in drinks and candies. I also avoid anything I cannot pronounce on the first try. Also, I recommend to avoid dairy if you are going to slip up a bit and eat gluten—dairy makes the reaction way worse.

Jen: I classify gluten as wheat, rye, barley and malt. I also always avoid all types and never make exceptions. I also consider oats as gluten, as they are often farmed in the same field as wheat. But, I will eat specially grown gluten-free oats.

Question 4: What is your perception of GF diets for the masses (like the Atkins diet)?

Sara: I love that people are so interested in GF! The more people who are interested, the more opportunities I get to eat (as more companies produce better and a wider range of products)!! It’s a really healthy diet and I have heard from a large number of people that they just feel better after not eating gluten anymore, regardless if they didn’t feel like anything was wrong in the first place.

Jen: I have never been a fan of fad diets, so I don’t believe there is one type of food or one solution to a healthy diet. As in anything, I believe that gluten is appropriate in moderation, and whole grain wheat provides important diversity in nutrition.

Lydia: Do a GF diet it if you feel better! If you don’t have health problems related to gluten, you are just restricting yourself pointlessly. Avoiding gluten isn’t necessarily healthier. You have to see what personally benefits you. No harm done in trial and error!

Summer: I think everyone has his or her degree of tolerance for gluten. So if a person is even a little bit intolerant, they might benefit, but if they are perfectly tolerant, there is no reason to spend the extra effort and money to go GF.

Question 5: Any other insights on certain foods/food categories and health?

Sara: There are a lot of great bakeries that make GF options, and there simply isn’t anything better than being able to walk into a place expecting temptation and tourture and walking out with a cupcake that won’t make you sick.

Lydia: The best gluten free breads are Schar, Udi’s and Kinnickinick.

Jen: One time I went two weeks trying a pseudo-raw diet without eating processed or packaged food. I really felt a lot better, but it was too challenging. Since I don’t leave much time for cooking from scratch, I only was eating vegetables and rice and missed things like pasta, granola and yogurt in my diet.

A few weeks ago, the FDA released an announcement that it has (finally) created a gluten free label that will be regulated and enforced: products sporting this label must have no more than 20 parts per million of gluten in the product. (http://www.npr.org/templates/story/story.php?storyId=209265283) What’s your take on this ruling?

Summer: I’m for the new regulations on the labels. 20 parts per million is a very small amount… it would be like adding an 8th a teaspoon of flour to a loaf of gluten-free bread. I don’t think its likely gluten free manufactures would bother to do that, so I think the FDA has set a pretty high standard. Even if they were to add it, the gluten would be so saturated within the gluten free product itself it likely wouldn’t cause much harm. I would use the analogy that this is similar to the 99.9% of bacteria that anti-bacterial soap eliminates…that other .1% probably won’t get you sick.

Lydia: 20 parts per million is small enough for me. I am able to get away with eating non-GF labeled products that “may contain wheat”; they usually don’t make me ill. So, yes, I will eat things with a GF label!

Jen: I would ideally like to see it down to 10 or 5, but I understand testing for those amounts can be much more expensive.  As a celiac, every molecule of gluten I digest contributes to colon damage. I generally will eat products with the 20ppm labeling without any physical response, but to me it is not 100% “safe”.

A big thanks to you ladies for sharing your experiences and insight!

Finding Stability in the Turmoil of T1

In the past few years, there has been a lot of research on the emotional health of young adults with T1*. Most of these findings report higher levels of psychiatric distress: translation, those with T1 are showing high levels of depression, anxiety and general psychological distress. There is also a correlation data between a higher level of psychological stress and higher A1C reports (although, at this point, it is not clear which is the casual factor)2. This is problematic for anyone with T1, but is especially threatening for young adults, as the majority of young adults are leaving home, finishing up college, and creating a new life (that generally goes through periods of instability as we try to figure out jobs, relationships and living on our own). So what’s the backstory of this emotional upset?

 

Mr. Patrick Totty, contributing editor at Diabetes Health, wrote an article recently called The Agony of Type 1 Hope, discussing from a T2 perspective what seemed to be a great frustration for those with T1: the possibility of a cure3.  In this article, he discusses the frustration, anger and anguish that he has seen in comments posted on articles about emerging research by those with T1. And to me, this makes sense. T1 is not an easy disease to live with; it’s a consideration throughout each day, it’s everyday, and there are no days “off”. It’s a constant. And for many, it can be a constant struggle. Thinking back to something Eugenie Coleman said during her interview (see previous post), we are substituting mathematical calculations for an organ that was perfectly made to help our endocrine system… and is now unable to do so. So, there are going to be days that things go wrong, and no matter how hard we feel we are trying, T1 in that moment feels like an enigma- a nonsensical beast that is raking over our body, causing physical, physiological and emotional discomfort. Understandably, the result will feel tremendous, and we may need to spend some time curled up in a ball, feeling the frustration, pain and confusion of coping with such a disease. And that’s okay—we need to let ourselves have those moments. And at the same time, we must also acknowledge that we have an opportunity to grow stronger as individuals, and that we have a unique opportunity to be closer to our bodies than most people are—when listening and working hard at controlling our blood sugars, we can also quickly identify when other things are going on.

 

The way that I have found to cope with the struggles I feel, is to live my life in the moment, dealing with the day to day issues of this disease, and trying to invest my hope and effort into dreams that I am in control of. I am not a cellular biologist, or a medical doctor, nor do I wish to be—a cure is therefore something that I would benefit from, but not something I will invest a lot of time or hope in. Rather, I will focus on what I am: I am an adventurer, interested in the world around me, and how other individuals and collective groups understand their world… so my hopes are stored in travel, pursuing education in anthropology and psychology, and having adventures. I find that dealing with obstacles that I can effect change over, such as obtaining supplies for Kenya, to be very gratifying to overcome, as they are directly helping me achieve a larger dream, and this contributes positively to my overall emotional health!

 

If following stories about research on a cure, investing time, hope or maybe even money into it, makes you feel better and helps you get through the day-to-day struggles of T1, then by all means, continue! If, on the other hand, investing your time and energy into keeping track of research and a possible cure is causing additional emotional strain, maybe consider investing yourself into a venue in which you have more control… this isn’t to say you should give up hoping, but by engaging with something that you have more control over, you will have the opportunity to feel more success, and potentially learn more from any missteps!

 

 

*Hislop, A. L., Fegan, P. G., Schlaeppi, M. J., Duck, M. & Yeap, B. B. (2008). Prevalence and associations of psychological distress in young adults with type 1 diabetes. Diabetic Medicine, 25: 91–96. doi: 10.1111/j.1464-5491.2007.02310.x

 

*Luyckx, K., Seiffge-Krenke, I., Schwartz, Seth J., Goossens, L., Weets, I., Hendrieckx, C., & Groven, C. (2008). Identity development, coping, and adjustment in emerging adults with a chronic illness: the Sample case of type 1 diabetes. Journal of Adolescent Health, 43(5), 451-458.

(http://www.sciencedirect.com/science/article/pii/S1054139X0800219X)

 

*Kakleas, K., Kandyla, B., Karayianni, C., & Karavanaki, K. (2009). Psychosocial problems in adolescents with type 1 diabetes mellitus. Diabetes & Metabolism, 35(5), 339-350.

(http://www.sciencedirect.com/science/article/pii/S1262363609001220)

 

*Type 1 Diabetes Complications – Type 1 Diabetes Health Information – NY Times Health. (2012, May 22). Health News – The New York Times. Retrieved August 15, 2013, from http://health.nytimes.com/health/guides/disease/type-1-diabetes/complications.html

 

2Northam, Elisabeth A., Lin, A., Finch, Sue, Werther, George A., & Cameron, Fergus J. (2010). Diabetes Care. Psychosocial well-being with functional outcomes in youth with type 1 diabetes 12 years after disease onset. Diabetes Care, 33(7): 1430-1437. Doi:10.2337/dc09-2232.

 

3Totty, P. (2013, August 9). The Agony of Type 1 Hope . Investigate, Inform, Inspire. Retrieved August 12, 2013, from http://diabeteshealth.com/read/2013/08/09/7954/the-agony-of-type-1-hope-/

Interview with Fellow Graduate, T1 and Worldly Traveler, Eugenie!

Interview with Eugenie Coleman, T1, adventurer, philanthropist and overall well-wisher!

Eugenie was diagnosed in high school with T1 after experiencing symptoms of hyperglycemia for several months. We met our freshman year of college, when I saw her discreetly giving herself an insulin shot in the dining hall! (She always jokes how covert she was being, and how I totally blew her cover!). I have been lucky enough to become friends with this awesome lady over the past 4 years, and even participate in the Tour-De-Cure bicycle event this past May, riding 10 miles in the beautiful Maryland countryside. Eugenie is such a cool person, but she truly inspires me as she had little experience with other diabetics, and has found her way through coping with T1 although often having to travel the rode solo. Here’s an interview on her experience of studying abroad with T1 during her junior year of college: read on to find out how she dealt with insurance issues, a new environment, and an injury while in Brazil!

Me: You’re 22, graduated from college, and are in the place of making a lot of decisions about the next few years: looking back on the past few years, (and thinking ahead) how has T1 impacted your young adulthood?

Eugenie: [T1 has influenced me] quite immensely actually; since graduating from college I have stopped drinking all together. I had so many issues the day after drinking heavily… [in] college it was all about binge drinking, and I found that it was really hard to predict my blood sugars the following day. Whereas other people dealt with just chugging a bunch of water to cure [the] hangover, I had to deal with not only the hangover, but also adjusting my bolus ratios to account for the fact that alcohol was still in my system. Now, I know that a lot of people drink, I know that you drink*, and that’s cool, but for me, I’d rather not deal with it whatsoever. So, since graduating, I have [stopped drinking, and just gone out and had fun dancing]. And I have been finding ways to get my diabetes under control.

*Note: In terms of alcohol consumption, I always bump up my basal rates around 50%, so I’m at a 150% rate of basal after a night of heavy drinking.

Me: What else have you looked into or tried out to help manage your T1 since graduating?

Eugenie: I spoke with a guy who is a raw vegan, and he told me about how he keeps his diabetes in check by not eating fat. I haven’t dramatically shifted to a raw vegan diet, I still eat meat, still eat eggs, and I do eat fat in the form of almonds and avocadoes and coconut milk, and really good stuff. But, I have tried to cut out grains from my diet, gluten specifically, to see if cutting out those starches could help control my blood sugar… and I found that it is not necessarily the case—even when just eating fruits and vegetables, it’s hard (no matter what your diet is) to become your own pancreas, and calculate that stuff. So, now I’m considering trying out the pump, to see if that will help me gain more control.

Me: Has diabetes impacted you beyond dealing with the physical disease?

Eugenie: [Yes], in terms of finding a career, I am finding that my diabetes is motivating me to find a job working for organizations like ADA or JDRF, that donate all their time and energy to finding a cure for this disease. Hopefully I can get a job in that kind of capacity, which would be a huge thing for me, and a great way of using my talents, so that would be another way that diabetes has had a huge effect on my young adult life.

Me: I know that you went abroad, and I am curious about how you managed to get insulin—did you have any issues?

Eugenie: Based on my experience, insurance companies suck. It is really frustrating dealing with an institution that is trying to profit off of your health problems, because I was going abroad for what I foresaw to be 6 months (to Brazil), which here in America we consider a third world country. And I wasn’t [looking] to get a new doctor, or deal with getting prescriptions [while abroad], and trying fill them while I was there. I just wanted to get all the insulin [before I left], all the needles, all the test strips, all the lancets, and have them at my disposal while I was down there. So, that is 6 months worth of supplies. But, normally insurance companies will cover maybe a month at a time. So, getting enough supplies was a huge hassle.

Me: So, how did you end up getting the supplies?

Eugenie: [First], I had to get a prescription from my endocrinologist. Then, I had to get vacation override from CVS so that they would give me 3 months worth at a time. So, I had to deal with the pharmacies getting that much supplies, and I had to deal with the insurance company covering that much. [When it was all said and done] some of it had to be mailed to my apartment, rather than picking it up in person at the pharmacy, just as a way of getting a loop hole in going around the system’s way of dealing with it. So I finally ended up attaining everything I needed, but I know for a fact that my mom ended up paying out of pocket for a significant amount, especially for test strips, which are so expensive. For some reason, insurance companies don’t understand that the amount of times you test a day can vary, and sometimes it can be more than 10 times a day—who knew there are 24 hours in a day, and you want to test every 2 hours, well… they don’t want to cover that. But, I finally obtained everything I needed and got down there.

Me: What was your experience with customs and supplies?

Eugenie: I had a huge bag of supplies, and I had to bring with me a letter from the doctor, saying that yes I was diabetic, which was why I was carrying all these needles, that I wasn’t going to hurt anybody, so that was taken care of, but it was brought up while I was abroad.

Me: How did you deal with your sharps abroad?

Eugenie: Well, when I was abroad, I got a sharps container. Or use a laundry detergent container, that’s been cleaned out, and put sharps in there. I didn’t really change my lancets as often as I should, but I would put those in the sharps container, and the used needles and stuff. And it never got too full, but I know that if it ever does get too full, you can always drop it off at a hospital and they’ll know what to do with it. But I just brought that back with me.

Me: What was it like dealing with T1 in Brazil?

Eugenie: My diet changed when I was in Brazil. I was eating a lot more fruits, rice and beans, and I had experiences with highs and lows from that. But for the most part, I feel like I took pretty good care of myself!

Me: What was the living situation, and how did that impact your experience with T1?

Eugenie: My stay was great because my homestay was done with a family that lived 2 minutes from the hospital—the study abroad program really took care of me in that regard. They made sure that I was placed in a house that was closest to the hospital, and they put me with a family where my host mom’s sister and parents were all doctors, so if there was any concern, they could be there within 5 minutes, and helping me out… I found that the study abroad program was really considerate in that regard. They even gave me a 2nd location to store my insulin, because my dad was really concerned that if the power went out, at my host family’s house, the refrigeration would fail, and my insulin would not be secure. So, he asked me to find a backup plan, another place to store insulin in a refrigerator, and maybe even a third (I was like, whoa dad, slow down!) But my study aboard program, which was called Counsel on International Educational Exchange, CIEE, for any of you bloggers out there who are looking to study abroad, helped me out with the living situation.

Me: Any other memorable T1 and host family experiences?

Eugenie: Actually, the first time that I met my host mother, I went with a walk with her. And, I hadn’t brought anything with me… I hadn’t brought my glucose monitor, I hadn’t brought any snacks in case my blood sugar went low, I hadn’t brought my insulin or anything like that. But we’re out walking, and she was showing me the area, like, “so this is the beach, this is this… ” and I started to feel—and I don’t know if anyone else experiences this—but I started to sense my shorts against the backs of my legs. But I could tell that I was starting to go low, so I said to my host mom “could you get me a coke”, and she did, and we sat down, and I drank it, and she was really understanding about it. But I felt really stupid, because it was my first hour knowing this woman, she was going to be taking care of me for the next 4 months, and already I had made a mistake… One thing that I’ve experienced a lot [in having 1] is putting blame on myself when it comes to problems with diabetes. [What I’ve learned is] that you’ve got to take it a day at a time, and every time something like that comes up, remind yourself, “I’m doing the best that I can, it’s not my fault, I didn’t ask for this disease”. You’re pancreas was created perfectly to do all this for you, and when it’s not working, there are going to be problems, because you are doing the calculations yourself. So you just have to be easy on yourself, and stop blaming yourself for problems that arise, and just take them one step at a time.

Me: How did you explain diabetes to the people you hung out with in Brazil?

Eugenie: I hung around with a lot of American girls, so it wasn’t difficult to explain to them what was going on, cause I just spoke English to them, and they knew other diabetics.

Me: I know you had an accident during your time abroad- can you tell me about it?

Eugenie: Towards the end of the program, I fell off of a skateboard, and I broke my ankle. I wouldn’t say that that was a diabetic concern, although it was in lower extremity. But it did affect my blood sugars, because I became sedentary while my feet healed, and dealing with physical therapy and traveling.

Me: Do you have any other crazy abroad stories that have to deal with diabetes?

Eugenie: There was never an issue about going out. I probably should have been a lot more careful, because that was back when I did drink heavily, and that was how all my study abroad friends partied, they just drank a lot. So there were times when I would black out and wake up the next morning and was like “wow, how did I take care of my diabetes?” But I do remember one situation, it was after I had broken my ankle and before my flight home had been scheduled. There was a moment where I felt weird, felt like my blood sugars were going low, and I got out my glucagon and I did everything—I injected the water (diluting solution), swirled it around, pulled it back in and I put [the loaded syringe] on the side of my bed, and I said to my host parents, “if I go unconscious, inject this into my thigh and get me to the hospital”. It didn’t come to that, but that was the first time I had ever prepared the glucagon injection for myself.

Me: Wow, that’s crazy! It’s good that you had the emergency glucagon kit. When I made this decision to go to Kenya, I initially was in the mindset that I was just going to up and go!! But my parents reminded me that there are so many logistical things to think about and plan for before taking an adventure like this one (such as letting people know how to use an emergency glucagon kit). Anything you recommend doing that you did and really were happy about, or didn’t do and wish you had?

Eugenie: Looking back, I wish I had made a connection with an endocrinologist in Brazil who I could talk to about these things. I mean, I don’t know if I would have had access to an English speaking endocrinologist, which would have made it more difficult, but I did speak Portuguese, so I could have made a basic connection and maybe understood a lot of what was going on. I kinda wish I had done that because a lot of times, I just think “it’ll work itself out, it’s not that big of a deal” but, you know, diabetes is a huge thing in a T1 person’s life, and you can’t just throw it to the wayside. Instead, you have to think everything through, and you have to think, “ok, whatever amount of effort is going to go into this, and whatever amount of money it is going to cost me or my family, it is worth it, it is my health, and it has to come first before everything else”. It’s hard to face those facts when you get so used to the everyday things that become habitual and don’t present as much of a problem in your life (such as having access to prescription refills at the CVS around the corner). There are certain things when you’re changing your lifestyle, especially when you’re changing where you’re living, that you just have to think through.

Me: I agree, it’s more than worrying about food, water, shelter for diabetics… the carefree traveling life has to be a lot more planned out when dealing with a major disease.

Eugenie: It’s something that almost makes me want to cry… other people don’t have to deal with this. Why do I have to deal with it? How much easier would it be if I could go backpacking and live off of nuts, and bring canned tuna and [other stuff] in my backpack, and not have to know where the nearest hospital will be, where the nearest pharmacy will be, where I can go buy a juice box to bring with me. People don’t think about that, and you develop envy of those people. But, everyone has their own issues to deal with. And honestly, when they don’t have to think about it, there’s no challenge, so they’re not growing stronger like you are everyday, facing these obstacles, thinking about them and dealing with them, and not just putting them on the backburner, and saying they’ll work themselves out. So, definitely think about all the ways that you’re becoming stronger by doing all of this—for example, go to the nearest grocery store wherever you’re traveling, and see what they have to offer. They might have tiny little juice boxes, that’s what I had in Brazil, and I stocked up on them for lows. By finding this out, and paying for them out of my own pocket, I got to know how much stuff cost, and what the supplies are [available]. A trip to the grocery store as a diabetic is definitely the first thing you should do when you travel somewhere.

 

Me: Any final advice?

Eugenie: Just from my personal experience, that concept of staying positive! A cure may come in the next 10 years, it may not even come in your lifetime, so don’t be focusing on that, be focusing on how you can deal with diabetes in your everyday life. There is a way to do things that seem impossible at first, so for like you and me, studying abroad. Take [obstacles] step-by-step and work with someone, and ask for help when you need it—don’t be afraid to take on something that seems daunting at first, because there will be a way to work things out!!

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(Eugenie and I at the Tour-De-Cure bicycle ride in May 2013!)

Negotiating Supplies, How to Overcome the Structural Obstacle called Insurance

I am running into insurance issues while trying to obtain the amount of supplies I will need for my 9-month stint—major bummer! Here’s the situation: as I have graduated, my school insurance ends mid-August—a serious bummer, as school insurance was awesome as it covered a lot of the cost of supplies—we’re talking 8$ a script. I now have to switch to a high risk Wyoming pool, as my parents are self-employed and other companies deny me due to a pre-existing condition, i.e. T1. After talking to MiniMed about ordering pump supplies, this is what I have found. I am both lucky and unlucky to be switching insurance companies in about a week; the challenge, insurance companies will only pay for a 3 month supplies…. but by switching, I am able to basically double order supplies. But, this still leaves me with only 6 months of a supply that is covered by insurance. Hmm, so how to overcome this issue?  Working on it, and will let you all know. Additionally, any suggestions welcomed.