Food Issues & Type 1 Diabetes

SilverwareMy latest “Viewpoints” article is up over at dLife.

This month I’m talking about something that I bet many of us struggle with.  I know that it is a real battle for me, and it is starting to make sense why.  The topic is also starting to pop up more and more in some of the media blurbs and articles I’ve seen recently.

I knew weeks before I wrote my viewpoints article what I wanted to write about.  The basic concept is that being a type 1 diabetic, there are a few factors contributing to the problems I have with food.

  • Growing up on R and NPH insulins, I had to eat at certain times, whether I was hungry or not.  Because of this my natural “hungry/satisfied” wires are all messed up.
  • Even on a pump and using just Humalog/Novolog, we still often have to override our natural instincts (ever been full and low at the same time?).  Again, my wires are all crossed up.
  • As a type 1 diabetic I am lacking amylin, a hormone that plays a role in digestion and telling the brain I am satisfied.  I am missing a critical “stop eating” signal between my stomach and my brain.

A few days before I wrote and submitted my viewpoints article, the dLife Update | Newsletter (February 26, 2010 – Vol. 6 No. 8 ) ran a “Spotlight” on eating disorders.  I thought the timing was perfect.  The introduction was perfect – it said “Diabetes puts a daily focus on food and nutrition.  For some people, especially teens, this constant focus could lead to the creation of food fixations that may be difficult to overcome…”.  From what little I have heard about eating disorders and treatment, focusing so much on what we eat is exactly what people in treatment are NOT supposed to do.  Precisely the point of the Spotlight introduction – that people with diabetes HAVE to focus on it.

This spotlight feature actually included a quiz, where you answered 26 questions and were given some input on any potential food and body issues.  The quiz was interesting, but I felt that it might have focused primarily on the traditional food issues (such as anorexia, bulimia, and diabulimia).  But, what did I expect, right?  I mean, those are THE eating disorders, aren’t they?  But could I be fighting something different because of type 1 diabetes?

Either way, I was glad to see this in the newsletter, because I think we need to talk about it more.  It seems to be a very quiet subject, and I think I can understand why.  Lee Ann, over at The Butter Compartment, does a real service to many by being so open to talk about her experiences.  I don’t know if it is just me, or if I’m not looking hard enough (because I’m in denial?), but I don’t find many GUYS talking about food problems.  Is it because of the stereotypes?  It is because it is, stereotypically, females that fight with it?

A week later, after submitting my dLife article, I got the latest diaTribe newsletter (Issue 20).  In this issue, Gary Scheiner wrote a great article on Symlin. In this article Gary says “…Given that many people with type 1 diabetes have difficulty controlling their appetite (likely due to lack of the amylin hormone), …”.

Might I really be fighting with food because I’m missing amylin?

Then my editor at dLife (Kate is awesome) sent me an e-mail pointing me to a study being done by Dr. Deborah Young-Hyman, a pediatric psychologist at the Medical College of Georgia’s Georgia Prevention Institute. The article was written by Toni Baker, and is titled “Diabetes’ link to eating disorders explored“.  It is a fascinating article about a fascinating study.

You can’t use the same criteria to diagnose eating disorders that you use in non-diabetic populations because what we actually prescribe as part of diabetes treatment is part of disordered eating behavior. Food preoccupation is one example — Dr. Deborah Young-Hyman

This is a big deal folks! As Toni says in the article, “answers could include better methods of insulin delivery and new therapies that address hunger-related hormones, which also become dysregulated in type 1 diabetes.”

Am I foolish to feel good about this? To feel good about people exploring the possibilities that I’m not crazy?  To feel good about people exploring the possibilities that I’m not fat because I’m weak willed, but instead have some goofed up shit going on in my body?

Why isn’t this talked about more?  Are we all “guilted” into silence because we think it is our fault?  Does mainstream media paint a picture of failure if we are fat?

But if this is true, why aren’t ALL people with type 1 diabetes struggling with our weight?  Or maybe we all are, and some are just working very, very hard to manage it?

How many of you out there who are type 1 deal with some issues around food?   I want to hear from you!

Symlin is available, which may help many.  But there are a lot of challenges that come with it.  So many challenges that many of us can’t or don’t use it consistently.  I want to hear about that too.

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51 thoughts on “Food Issues & Type 1 Diabetes

  1. I know this is an older post, but I just cam across it, obviously because of a search about this issue. My daughter is 14, she was diagnosed 2 years ago. We have overcome the initial hurdle of learning to manage Type-1, but we have now entered this phase. In essence she’s never full, ever. She’s not overweight, yet, but I’m afraid she may get their. But more than that I feel bad for her. She tells us that she sometimes lays in bed and cries at night because she feels so hungry. She is definitely eating more carbs than the doctor has recommended, and we keep carb-free items on hand, which she goes through in no time. We’re going to address this with her endo at the next check-up. In the meantime I’ll look into Symlin. Thanks for the post

    • Hi Erick! Thanks for stopping by! All the best to you and your daughter. I haven’t been using Symlin for a long time now, and I’m not sure it’s even around anymore. However, I’ve had positive experiences with Victoza with similar benefits.

      • Thanks for the updated info Scott. We are lucky to have been referred to a great pediatric endo on day 1 of the diagnosis.

  2. Thank you so much for speaking to this, I actually teared up reading your article because it so validates my experience too. I have struggled with messed up hunger signals since diagnosis, and developed an eating disorder from feeling out of control of what I was putting in my body and from feeling uncomfortable with the steady the weight gain after my diagnosis. Recovery has been extremely difficult, because I still must be so focused on food to manage my blood sugars. Its also so hard/ (impossible?) to eat intuitively when I am never fully satiated.

    It’s such a relief to see I am not the only one experiencing this, and it isn’t my fault.

    • Thanks for sharing, Nicole. I think there are many more people with diabetes battling for a healthy relationship with food than we know about. And it’s totally not your fault. I’m just digging into a book for review from Ann Goebel-Fabbri called ‘Prevention and Recovery from Eating Disorders in Type-1 Diabetes’. It might be worth taking a look at. Hang in there, and keep us posted.

  3. I’m a type 1 diabetic and my doctor started me on Victoza in 2010 but I developed papillary thyroid cancer in 2014 and my dr said I could never use the drug again. But while on victoza my hungar pains went away. It was amazing. My doctor told me that Victoza replace the hormone amylin I was lacking. I tried Symlin and Byetta but they didn’t work as well as Victoza. Do you know of any other way to replace the lack of amylin in the body? Are there supplements or research studies that can help? My doctor is telling to exercise and watch my diet but still the hungar persists.

      • i have found that symlin worked after using for a while. You can’t stop and restart, because you have to wait for it to get in your system (I guess). I am now having difficulty digesting food, so I’m going in the opposite direction. Good luck to you.

  4. I am HUNGRY all the time! It doesn’t matter what kinds of food I eat, it is never enough. I have Celiacs and find myself eating my husbands muffins because there is nothing else in the house i want to eat. I went to a weight doctor who wanted to put me on some meds. I couldn’t take them because of heart issues. It’s all very frustrating.

  5. I’m a type 1 who is hungry ALL the time and is always thinking about cake and cookies or any of the forbidden foods. Needless to say my blood sugars are always jacked up because I binge every other day now. My weight is normal only because I can’t control my bloodsugar with hga1c in the 8s.

    • Hey, Carmen! Thanks for stopping by. Hang in there. You know, there’s a lot going on with us. Our constant need to hyper-focus on food isn’t normal, and we’re also missing other hormones along with insulin (I used Symlin for a little while, but had some scary lows that eventually persuaded me to quit). I guess what I’m saying is that it’s pretty normal to feel what you’re feeling, and I think many of us also struggle with it. I have found only mediocre success through a combination of trying to stay active, eating frequent healthy meals to limit my hunger, and trying to do the “mind over matter” thing to power through it. It helps me to know that it’s not just all in my head, you know? Keep fighting, and keep working on it. You can do this.

  6. I am so glad that I am not the only one! I am ALWAYS snacking and munching on stuff and as a Type 1 that makes it rather difficult to keep track of things. Even when my numbers are good though I catch myself eating until my stomach hurts because I never really feel full. I didn’t even know that there was medication available to help with this…

  7. wow. i thought i was the only one. i am a type 1 diabetic and feel so guilty for overeating. I have not ever been “fat”, but have struggled with keeping my weight consistent. I will not feel hungry all the time or anything but once I start eating, I cannot stop. I’ll just keep eating. I never feel full. I will start to have pain from eating so much but mentally wish I could eat more. I hate myself for thinking about food so much. But, when your life revolves around what you consume, how can u not think bout food all the time?

    • Hi Payslee, it’s a nightmare, I NEVER feel full. I’m so worried as the Endocrinologist said I need the Pump, I said no. The thought of a pump really upsets me. Never had a weight problem. Since injecting I do now.😱

  8. My husband is type1 & struggles with his weight.
    He has gained a bit of weight over the years but age will also be a factor. He is 51 & has been a diabetic for 23years.
    Being diagnosed as an adult maybe makes a difference with your attitude to the food issue? If you were diagnosed as a child you rely on your parents to tell you when you should eat, what to eat & when. As a child it must be really hard when all your friends can eat what they like!!
    As a family we have a good balanced diet (as best we can in a hectic household).He has a very busy life & is fitter than a lot of non-diabetics of the same age. We walk a lot and he goes to the gym which really helps.
    I just wanted to tell you about a friend of my fathers who became a diabetic at the age of 19years & is now 83.
    Physically he is as good as any 83year old but sadly was diagnosed with dementia a year ago.
    A role model for any type1 though wouldn’t you agree?

  9. Scott, I’m having a very hungry week and I feel so frustrated. I came across your article while trying to find myself some advice. Now at least I feel validated , and I know I’m not the only one thinking about food constantly. Thank you so much for your honesty.
    There’s a doctor (quoted in Elizabeth Edelman’s articles) who advocates VERY low carbs and an A1c LOWER than non-diabetics! I wonder if any of that is valid, achievable, or whether he’s just someone who’se been able to control his own diabetes and thinks we can all do the same. Regardless, I get really angry when I read that kind of thing.

  10. I have been sitting here reading this post and all the comments when I should be working, but I just can’t stop. It is so great to hear about this subject from people who have experienced what I have too. When I was dx, I weighed 138. Now I am 180. I am a woman who is 6 feet tall, so I can carry the 180, but my normal weight is 160. I have no idea how to lose weight now. I am afraid to do intense cardio because of the lows. So eat to exercize – how does one lose weight? Interesting about the Efexxor – perhaps that adds to my problem too. Thanks everyone.

  11. llya, sounds like your friend is still making insulin so hooray for her. Whining? Vanity Writing?
    Diabetes is beyond frustrating and getting those frustrations out so others who may feel the same way will not feel alone is not whining at all.
    So no insulin means no hunger? Are you a doctor?

  12. Dear Sir:
    Think I posted on your blog in the past in regard of a hypo incident you had when outing with your kids in the heat. Your appetite is result NOT of amylin or leptin deficiency but of INSULIN excess. I would kindly recommend this blog to you.
    [Michelle’s Blog](http://michellestype1diabetes.blogspot.com)
    It is focused more on positive experience and less vanity writing and whining and has more scientific grounds for breaking the vicious circle in which the majority of DT1 are trapped. Insulin would inadvertently drive you into a food craving and weight gain.

  13. One of my best friends has been battling anorexia for the past 5 years or so, right around the time I was diagnosed with Type 1. Sometimes I feel a little responsible for some of her bad habits because maybe my food obsessions may have rubbed off on her. Who knows. She’s been getting treatment and looks great and my obsessions have worn down a bit.
    Having Type 1 is a lot like having an eating disorder. I have felt many times that counting each morsel of food that enters my mouth can’t be healthy emotionally. I’ve always been thin (thank you genetics) so the weight gain wasn’t too much of an issue with me, but I can see how it can be a problem.
    This isn’t something that’s easy to talk about, so I applaud you for saying it here. 🙂

  14. I have had type 1 for 47 years, and it has never been easy for me, nor is it getting any easier. It is harder as I get older, just dealing with it all, and with issues involved with aging. (I’m 54). I hate it all, but some days are better than others. In order to cope, I realize that there are good days, and there are bad days…some days I can cope with taking some Symlin–sometimes it helps, other times it adds confusion to the mix. Other days, I can’t cope with another variable (like Symlin). And there are the days when I just can’t care any more and I have something I “shouldn’t” (or more than one thing.) The weight issue never stops. The hungry/not hungry never stops. I try to work, distract myself, focus on something else and move on, until the next minute. Don’t mean to be so negative, but it’s all true. Thanks, Scott.

  15. And to our friend Greg…
    Do you actually have TYPE 1 diabetes? Sure every bozo knows you need to eat healthy.
    But eating healthy for most people does not include a complex ratio schedule of calculations, weighing, and measuring just to stay out of a seizure or coma, and well, stay alive. Add a little daily trial and error to see how the same food affects you differently that day with all the other factors that affect blood glucose, hormones, and absorption, and you have the hell that is Type 1 diabetes.
    And then you have the ignorant people people like Greg telling you it’s a “manageable” condition and it’s your own fault.
    Yes, everyone (including us Type 1s) need to eat as healthy and fresh as possible. Limit or exclude processed foods, limit portion sizes. But that’s not the issue here. It’s NEVER normal to have to force yourself to eat when you’re not hungry or not eat when you are starving just to live. And yet this is what we are expected to do every day of our lives.
    You wouldn’t tell a heart patient awaiting a transplant to do the job of their own failing heart, so why are we expected to be a pancreas, and do a good job of it?
    I can think of NO other lifelong disease (which usually begins in childhood) that requires as much daily effort and “unknowns” as this one. The worst part is, even with all this effort to be healthy, I am still going to die young and probably with complications, because no current treatment can prevent that.

  16. Try adding a fluctuating autoimmune thyroid condition common in Type 1 diabetics to the mix, plus Celiac Disease (also more common in Type 1 diabetics), plus food allergies (may be more common in some people with autoimmune diseases, including Type 1 diabetes), and you have the hell I deal with every day.
    I’ve never had a “weight problem” per se, nor have I ever tried to skip insulin or any other “diabulima” traits. However, I have had to jam food down my throat when full but low to the point of vomiting, and I am tired of spending 80% of the day planning what I’m going to eat. It’s the very definition of a medically necessary and medically prescribed eating “disorder”. It’s not normal to do what we do every day just to live.
    If scientists would spend even 50% of the same time they spend “discovering” common sense ideas such as this one on cure research, we would all be cured by now.
    My 2 cents.

  17. Scott, I just wanted to say thank you for having the courage to address this issue. This can be hard to talk about in our culture/society.
    I guess I have a messed-up relationship with food too… it’s hard to explain, but I usually see food for its utility rather than as a source of enjoyment. For that reason, I pretty much eat the exact same thing day after day, b/c I know how it will affect my bg (except for those crappy days when the bg is just downright unpredictable). I keep my weight down by exercising, but it’s a real challenge because I have to eat carbs to keep my bg up, especially after prolonged cardio. I’m sure I could weigh 10 lbs less if I didn’t take insulin, but oh well.

  18. I have an issue with food. I am very rarely hungry, but of course I have to eat which in itself is not a nice thing to have to do. I was told this is normal with long-time diabetics. It comes from testing your blood before a meal, figuring out how much insulin for food with every meal & also then calulating how much according to what your sugar was. It’s a very long process with each meal, and I sometimes deliberately skip a meal as it’s too much hassle.

  19. I feel like this is an issue that no one has really figured out. I’ve had a nutrionist tell me to have an all protein breakfast (great for keeping my blood sugar flat, not so great for energy to “do” life) and people giving me advice like Lee for a 60 carb/meal (so long flat blood sugar graph!).
    I have always been thin, with a very fast metabolism. I’m 6’6″, and was at about 190 before diabetes, down to about 160 by the time I was diagnosed at 30, and now up to about 195. The 5 extra pounds really help in terms of having somewhere to put my CGM sensor/injection sites. But I am basically hungry all the time. I could eat from the minute I wake up until I fall asleep, no problem. I’ve definitely had to develop a strategy for dealing with that (in a word, nuts) and it means that I have to exercise very regularly, because regardless of carb count, if you are always eating, there will be repercussions. I think there is still a lot of research to be done/knowledge to be gained on this seemingly elementary subject (and yes, Greg, eating is an issue faced by everyone, but is also an issue that is different for everyone. For diabetics, it is different in some very specific ways).

  20. The other side of the coin – being very, very hungry and very, very high! Lost count of the number of mornings I’ve had to skip breakfast because I’ve been high and had to wait for the insulin to work before eating.

  21. What kind of food issues are you talking about? Even if science cures diabetes tomorrow, you’ll still have to think about what you eat if you want to be healthy. Eating healthy is important for so many reasons beyond diabetes. Whether or not your condition is your fault or not, you’re the one who has to deal with it. Placing blame on your missing hormones is a waste of time and energy.

  22. I was “given” an eating disorder when I was dx’d in 1978. I didn’t realize make the connection until I read a very good book about a woman’s battle with anorexia (she wasn’t a D, and I didn’t have anorexia, but behaviors are very much like the type 1 life).
    I’m way past most of the Regular & NPH drama of years past. The Humalog & Lantus gave me a life. But I’ve made the connection to why it all transpired like it did.

  23. I agree that Type 1 (for that matter, ALL) diabetics are concerned about food. My nutritionist is constantly telling me I need a 60 carb/meal diet
    I have trouble feeling full and I am constantly snacking on something, chips, crackers w/ranch dressing, My wife constantly jokes with me about my “hollow leg”.
    Over the last year, since I have been working with a nutritionist, I have gained over 30 pounds based on the 60 carb/meal diet.

  24. another thing I will do that gives me unneeded or unwanted calories is if I test my bloodsugar and the two hour mark and my bloodsugar is normal, I will eat because in my head a good bloodsugar gives me the green light to eat again, ahhh!!!!

  25. I have been type 1 for 28 years. I was always thin and boy could I eat! But now the past few years, things are different. I’ve put on about 30 pounds since around 2003/2004 and am not happy with my appearance at all anymore. I struggle with picking out clothes every day! And the thing that gets me is that I can’t even pinpoint something to attribute the weight gain to. I always feel hungry but I don’t overeat. Maybe on rare occasions but definitely not all the time. Is it the extra calories from treating lows? Is it my insulin resistance causing my daily dosage to go up? Is it my age? Is it lack of activity although I wasn’t much more active before this? Is it my steadier bg and lower a1c? I’m not sure but I do feel like it’s a never ending battle. I’m certainly not glad that there are other PWD having similar issues but am glad not to be alone.

  26. As a survivor of diabulimia (20+ year battle), I am proud to say I will celebrate 27 years of T1 this year…. never thought I would make it this far…. I still have a few “food” demons to battle, but they are the normal ones, eating when I am bored, lonely etc….. nothing like the ones of my past…. thankfully!

  27. Scott, you and I were dx’d the same year. And it was a differnt way to live back then, not the best of times! I think we are lucky to have survived. And on the regime we had I did gain some weight, I think it was from feeding the insulin.
    Today I don’t struggle with my weight, but when it is not where it should be (according to me) I sure do feel like a failure and I alter my habits as necessary. I just work hard to keep it where I feel best, where I don’t have to buy new clothes (I love my rock and roll tshirts from the 80s) and where I can pass for healthy.
    I don’t have issues with food luckily. I think it is because I have been pumping for a long long time, I went from R / NPH mixing to a pump so it was a brand new way of living for me, much like ‘normal’ folks. I could eat what and when I wanted, and tried to keep to a diet of healthy choices. To get a pump you had to go to diabetes school (a stay in the hospital) for three days and learn all about nutrition, and measuring and keep track of every single second of your metabolism. It was intense, but I think it worked! I rarely get hungry and like Dean I feel a little happy when my stomach growls, it means I NEED some food.
    I am horrified at the constant blame that is aimed at PWDs. It’s just wrong, it’s ignorant and finally, it offers nothing whatsoever to the diabetic or to the rest of humanity. Talk about some goofed up shit!

  28. My stomach growls when I am going low, it is my NEW symptom.
    So I still cannot base my hunger on truly being hungry 🙁

  29. thanks scott
    this is a concern of mine
    “Growing up on R and NPH insulins, I had to eat at certain times, whether I was hungry or not. Because of this my natural “hungry/satisfied” wires are all messed up.”
    i try to fool myself into thinking i have broken this “habit”.but in reality i have not.when i see a good number in the morning i dont want to eat!!why mess it up.
    i can and do skip put off meals.but its hard.like you say its habit not a feeling,and work assigned eating times didnt help much either.ive been trying for a long time to let my body decide when its time to eat.but how many yrs and how many meals at certain times is dam hard to lose.i become happy when i can hear my stomach growl.now its time to eat.no matter what time it is.

  30. Scott everything you say is spot on as usual, my endo states having lows does not help as our brain/body is screaming out feed me, feed me, and so you cannot stop at 15 carbs and you end up bolusing because you ate too much to treat the low, it is never ending. My endo stated it is a cellular thing that our cells are screaming out to be fed when we have lows.
    I know for me when I was on the anxiety med Effexor I gained 30 lbs. and since being off the Effexor I lost 25 lbs, so I think a lot of my weight gain was because of that medication.
    I also come from the NPH and Regular insulin dark ages so I was always feeding a peak, and throw in exercise even though I am now pumping, I still have to feed myself to exercise which totally throws off the burning calorie theory of exercise.
    I also feel that the constant flow of fast acting insulin via a pump is not the best method to avoid feeling hungry and having bloodsugar surges creating this feeling, hope that makes sense.

  31. I have found that having type 1 makes me think about food alot which can’t be healthy! I’ve also been low and not hungry. Constantly struggle with the food issue and my weight. What you say makes so much sense. Thank you.

  32. This makes total sense to me. When I take Symlin I can stop eating before I am packed in with food. I actually feel full and stop eating. It’s crazy.

  33. After the weekend I’ve just had it is great to read this! Thank you! I’ve been type 1 for 17 years. I made several poor eating choices thanks to emotional overeating, then had to pay by being hyper most of the weekend. I had recognised how screwed up diabetes forces you to become with appetite, but I had not heard that we lack a hormone to ‘turn off’ appetite! Not sure how I’ll be able to use this, but perhaps recognise that telling myself to stop, rather than my body doing it for me, is necessary.
    Thanks again!

  34. I think I became addicted to overeating because as a child, I really had no say in whether or not I ate when I hungry. I ate because I had to, and since then, I think I’ve developed an inability to really tell when I’m hungry.
    I’ll also add that I think this is a cultural thing, and not a diabetes thing, primarily. I just finished reading the End of Overeating and I think a lot of the science behind the psychology of overeating and the science of the chemicals in our food attribute greatly to the obesity problem. The book is a bit repetitive, but a good read nonetheless. You might want to check it out (I can even send you my copy if you’d like, though I’m sure you can find it at your library or bookstore).

  35. Having serious food issues that I didn’t even know existed until I went on the pump. Symlin makes me nauseous and not hungry. I then struggle with the ‘I have to eat! 3 times a day and snack 3 times a day or else!!’ mode. It’s hard. I’ve gained 30 pounds in the past 2 years, seriously considered diabulimia as an option and am just tired, done, finished with being broken. Sigh. Thank you for writing this article, Scott.

  36. many times ive been not hungry and low…..and while my family is trying to shove food down my throat im wondering how long i can swallow without throwing up……and many times also during a low im famished….i can eat and eat and eat any thing and everything……thats not normal either….ive been normal hungry and i eat like a normal person…not just eating to eat ……my family used to say…you cant be diabetic..your not fat……well because if im low, and have to eat….and theres lots of calories there…then i have to be real careful not to eat much for the rest of the day….not fair either…….it gets tireing