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19 Responses

  1. stacey
    stacey October 28, 2010 at 6:33 am | | Reply

    it’s not just women that struggle with this. my partner, type 1 since he was 18, did this off and on for a few years–just decided the insulin was part of why he was heavy. he’s continued to struggle with his weight but thankfully, after a stay in the icu in dka that led to some counseling and anti-depressants, he’s realized that skipping his insulin is no longer the way to go about dropping the pounds. he’s now off the pills and hitting the gym with me, keeping his sugars in check.

  2. Nicole P
    Nicole P October 28, 2010 at 8:04 am | | Reply

    Diabulemia, though publicized heavily in 2007, has been talked about using that name since the mid-90s. See here an article form 1999-2000:

    http://www.savvyhealth.com/disp.asp?doc_id=25 and this study from 1997:

    http://journal.diabetes.org/diabetesspectrum/97v10n4/pg259.htm

    Dr. Brink was my doc growing up. When I fell into diabulemia in the mid-90s, he knew what it was and called it by its name even back then. Recovering is a daily struggle.

    If you get the blank stare and the “you’re making this up,” as a patient, you should refer them to Dr. Brink and NEDEC.

  3. Nicole P
    Nicole P October 28, 2010 at 8:14 am | | Reply

    Diabulimia has been identified since the mid-1990s. See article here:

    http://www.savvyhealth.com/disp.asp?doc_id=25

    and this article from Diabetes Spectrum 1997 re: NEDEC (New England Diabetes and Endocrinology Center) with diabulimia mentioned:

    http://journal.diabetes.org/diabetesspectrum/97v10n4/pg259.htm

    Dealing with diabulimia is a daily struggle. When you know you’ve got the power to lose weight and you are driven by whatever internal mechanisms to want that *so* much, it takes focus and determination not to succumb to the easy way to lose weight.

    Any endo who is, NOW, saying the diabulimia is in someone’s head, ought to be talking to the folks who’ve known it and called it what it is for the past 15 years.

  4. k2
    k2 October 28, 2010 at 8:17 am | | Reply

    Amy,
    Thanks for writing & sharing your struggles and big thanks also to Lee Ann and Dr. Goebell-Fabbri for their insights.

    I think people with diabetes, (myself included,) can develop al sorts of food issues because so much of diabetes management revolves around food.

    People with diabetes not only have to react to their own responses to food, but other peoples response to what we put in our mouths.
    Growing up as a t1, certain foods were thought of as “bad,” and other foods were actually called “free foods” and considered good.

    And as a kid, some foods (like grapes) actually made me angry. WHY did grapes make me mad? According to the diet given to me by my Pediatric Endo- I could only eat 12 grapes. WHO EATS 12 grapes??

    I never had an eating disorder, but I do remember running around the block and doing jumping jacks as an 11 year old to try and get my numbers down and I remember sneaking food and lying about it – a lot.

    Today, there is no diet and there are no “bad carbs” in my book. Instead, I prefer to use the term “challenging carbs.”
    I believe that this post will help many people with diabetes and their loved ones. Knowledge is power, and in this case, the knowledge/power can be used to recognize, treat and or prevent a very real problem.
    Thanks again!
    Kelly K

  5. Scott K. Johnson
    Scott K. Johnson October 28, 2010 at 8:51 am | | Reply

    Great minds think alike Amy! I just today posted about digging into my issues around food and self-destructive behavior.

    I value the bravery it takes to talk about these things, and I think it is one of the (many) reasons I identify with Lee Ann.

    Food is such a complex thing for us living with diabetes.

  6. xim1970
    xim1970 October 28, 2010 at 9:10 am | | Reply

    Thank you for this article Amy, and for sharing your struggles in college. On a similar note, alcohol/drug addicted diabetics can do a similar thing. I was severely addicted to alcohol, to the point that it didn’t make sense to eat in the morning, because I was either too sick or not hungry. Consequently I took no insulin at all. That put me in DKA with a bg of 1500+. I’m lucky to be alive. Just my 2 cents. Thanks!

  7. Sridhar
    Sridhar October 28, 2010 at 9:10 am | | Reply

    It is dangerous eating disorder. Patients have to be educated to take prescribed dosage of insulin. They need help from a psychiatrist and dietitian to monitor them regularly and increase the food intake slowly.

  8. Patricia
    Patricia October 28, 2010 at 9:14 am | | Reply

    I struggled with this as a teenager as well. Along with everything you mentioned in your blog, I think there is another component that contributes to eating disorders (of any type) in type 1′s and that is simply the degree to which we are forced to think about food. I would venture to say that we think about food more than just about anything else in one day because we have to. That’s not natural — we weren’t designed to do that. We’re supposed to throw foods in our mouths when we’re hungry and then go on our merry way. So I think it’s very easy to develop an unhealthy relationship (and even anger) with food as we can’t ever step away from it.

    I don’t know about you but every single thing I put into my mouth was under scrutiny from my mother when I was a teenager (and I was never overweight – mostly underweight for the most part). Add to that societal pressures of being thin (especially for teenage aged girls) and it’s a disorder waiting to happen. I’m sure it exists more than we think it does.

  9. Elizabeth
    Elizabeth October 28, 2010 at 9:44 am | | Reply

    Sometimes, that “I never gained weight” thought totally flashes through my mind. In fact, only having been diagnosed about 6 months ago and because of relatively minor symptoms rather than DKA, I even sometimes have a split second where my brain thinks everything was hunky dory and I should just order that big pasta bowl that I love but never seemed to make me fatter. I can totally see how that could be the seed of diabulimia for some people.

    It drives me crazy from time to time that I’m now taking care of my body and that means WEIGHT GAIN when I’m already overweight. And exercise? Much more difficult to manage than before. It’s not fair that taking care of yourself can make it harder to take BETTER care of yourself. Again, fodder for psychological issues. :(

  10. Scott S
    Scott S October 28, 2010 at 10:06 am | | Reply

    I think there tends to be a lot of blame placed on patients for what is arguably a logical conclusion for any person who tries to “control” a disease by dosing a hormone (insulin) in a non-physiological manner, and restricting their food consumption in an effort to try and control blood glucose levels (the reality is that food, activity and insulin are NOT the only 3 factors that influence blood glucose levels, they are merely the most influential). The sad part is that so many the medical profession fail to recognize these issues, and the need for psychological treatment also adds to what is arguably too much time spent with doctors in the first place. Above all else is the underlying assumption that diabetes is somehow controllable, therefore failure to do so must be the fault of the person afflicted with the disease, but never the disease itself or the treatment protocol prescribed, when both play a role.

  11. Lee Ann Thill
    Lee Ann Thill October 28, 2010 at 10:48 am | | Reply

    Thank you for such an informative post on diabetes and eating disorders. Thank you for reminding the D-community that this problem has not gone away, and based on emails I get from my own readers, continues to cause much intra- and interpersonal pain for too many of those amongst us. Thank you to Dr. Goebel-Fabbri for her research on incidence and treatment; I hope someday there are prevention protocols that emerge from her work. And thank you for the opportunity to share my experience. ‘Diabulimia’ is complex and insidious, but full recovery is possible with appropriate treatment, and it feels better than any magic clothing size or weight on the scale.

  12. Sarah Jane
    Sarah Jane October 28, 2010 at 11:27 am | | Reply

    Thanks for posting this, Amy. Very informative. That comment by that mother is ringing in my ears, “I hope my daughter never finds out about this.” I don’t think you have to know about eating disorders to develop one.

    The weight gain you experience after you start taking insulin is hard to deal with. I remember becoming pudgy around 9 years old, and then having my dance teacher rave about how great I looked and that I must have been going through a growth spurt when I was 11. A few months later, I was diagnosed, and the stretch marks I have on my stomach 12 years later are still mostly from the incredibly fast weight gain that occurred 3 months after diagnoses. It bothered me then and it still bothers me now, why did I have to bypass the “normal” weight for my height? I do obsessively check my total daily dose on my pump and try to keep it below a certain number. I remember my dad telling me in high school that it was because of that “fake insulin” I was taking that I was heavier than other girls. I never struggled with an eating disorder, but I certainly feel the pressure from the world to keep my body below a certain weight percentile.

  13. Laura
    Laura October 28, 2010 at 11:36 am | | Reply

    Thanks for reminding readers that this is a real and potentially deadly disease. My sister in law died at age 26 after living with diabetes for 23 years and diabulemia from her early teens. Because of resistence by physicians and nurses at the time to accept her dual-diagnosis (in the late 80s-early 90s), she received lots of guilt laden “education” about diabetes without help for her eating disorder.

  14. June S.
    June S. October 28, 2010 at 3:13 pm | | Reply

    I never developed diabulimia, amazingly. I was diagnosed in 1972, and read all the books they gave me in the hospital. I got the message that high blood glucose levels were like poison. I took 1unit of regular insulin every time my urine glucose showed a trace. We had no meters or A1Cs, and I gained way too much weight. I entered college weighing 123 lbs (at 5’5″) and graduated weighing 160. I avoided complications, and finally lost weight after blood glucose meters were invented, and better insulins were developed. Too much insulin does cause weight gain.

  15. Lynn
    Lynn October 29, 2010 at 10:29 am | | Reply

    This is a great post. I was diagnosed at age 5 and struggled from age15 to age 28 with all kinds of eating disorders, mostly bingeing and starving and my control was terrrible.
    Through the 13 years of hell almost every one of my medical doctors were cruel and insensitive. I was constantly being scolded for not making the right choices and constantly put in diabetes education classes. This led to a lot of shame and guilt for something that I desperately wanted to stop but could not figure out how to stop.

    I think it would be interesting if endochrinologists and ophalmalogists could try to practic harm reduction. Yes, eating disorders are awful, but they exist, and will continue to exist, but maybe they could try to be kind and understanding to the patient while they try to get they illness under control.

  16. Kerry
    Kerry October 30, 2010 at 12:24 pm | | Reply

    Thanks for touching on this subject. I have pre-teen daughter with diabetes and body image is always a struggle at this age with or without diabetes. It is always better for parents to be informed and know what to watch for.

  17. ER
    ER October 30, 2010 at 10:38 pm | | Reply

    Thank you so much for this post on diabulimia. I really appreciate you bringing light to this subject. So many suffer from this disease and yet so few really understand the disease myself have type 1, diagnosed in college (along with celiac and other things too) and soon thereafter became severely bulimic after I watched my weight quickly rebound from my initial diagnosis. However, when I felt the bulimia was not enough, I started restricting insulin.

    I still am dealing with diabulimia and bulimia and am working with a great treatment team right now with help and consultation from the incredible (and sadly not mentioned in your post) Barbara Davis Center for Childhood Diabetes in Denver, Colorado. Along this road it’s been very difficult to educate providers (endocrinologists, primary care physicians, nurses, psychiatrists, psychologists, etc) about how diabulimia works and the type of support needed to get better. I’ve been told by endocrinologists that they want nothing to do with the mental health aspects of managing this disease.

    And most other providers and friends do not know enough about type 1 to be of great help as many of them have quite a lot of misinformation about type 1 diabetes if any at all. This disease needs both the careful attention of the medical team (D-team) and a mental health team that work together, as you said in your post.

    All that said, I hope you know how grateful I am that you bring this subject to the public through your blog. I hope that we can get more awareness of this issue and hopefully in time there will be providers of all types that can competently help address these issues for the many many diabulimics out there.

    Best-
    ER

  18. Jacq Allan
    Jacq Allan February 26, 2011 at 4:18 pm | | Reply

    Thank you for blogging about DIabulimia, I was also featured in the AP article although the journalist told me it was for a local paper in the states and I would never be identified. Anyway

    I have been in recovery for around three years now and I run http://www.dwed.org.uk a non profit founded to ensure that we as a demographic have a voice. We also produce materials that you can download and take to your clinics. If there is anything I can do to help anyone please feel free to email me: info@dwed.org.uk

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