Diabulimia… The Rest of the Story
June 19th, 2007 by SteveThe practice of persons (most often teen girls and adult women) with type 1 diabetes withholding insulin for weight control is not new. The ongoing emphasis on physical appearance in Western societies is partly responsible for this behavior. The fact that the person with diabetes can “purge” calories through their kidneys (as a result of the high blood sugars that occur from insulin omission), make this a more seductive approach to weight reduction than the use of laxatives, weight-loss medications, or induced vomiting. The outcomes for persons who engage in this behavior are nothing less than catastrophic. Blindness, kidney failure and even death are what are now being recognized as the logical outcome of untreated diabulimia.
It’s easier to discover this if attention is paid to a number of factors. First, there may be a significant weight loss compared to a previous medical encounter. The hemoglobin A1C will be elevated in the 12% range or higher. More occasional insulin dose omitters may not have as elevated an A1C value though, making them more challenging to identify and help. Many diabulimics will omit rapid acting insulin doses while maintaining basal insulin levels to prevent total metabolic decompensation (diabetic ketoacidosis). The person may well be in a constant state of ketosis, meaning that fat is being broken down and converted to sugar (and acid byproducts such as ketones). This results in a steady weight loss, or absence of weight gain. In the clinic, patients may forget their blood sugar results or leave their meter at home. If they do bring in data, it may be very sparse or be outright fabricated. If that occurs, the discrepancy between the blood sugar levels (which may look in control) and the A1C (which shows the opposite) would be the only clue to the provider to explore this subject with the patient.
Many of the persons who engage in this behavior have a disruption in their body image. Most feel they are overweight and that insulin is the culprit. The deal the insulin omitting patient enters into is very Faustian in nature (a deal with the devil). The patient leverages their very future for a short term gain. Many don’t know where and who to turn to for help. Experience with eating disorders and type 1 diabetes is not found in many places. Furthermore, the problem itself is very difficult to treat. There are ups and downs to deal with, not to mention the stigma many persons carry regarding this behavior, which most know is wrong, yet engage in it anyway.
Treatment protocols need to be developed. The American Diabetes Association (ADA) must develop expert guidelines for the management of persons struggling with Diabulimia. Until there are better management strategies for generalist and specialist physicians alike, this problem will remain in the shadows and not receive the proper attention its due.
Last 5 posts by Steve
- Halloween and Diabetes CAN mix! - October 5th, 2009
- Introducing Healthy Families of South Texas - October 5th, 2009
- Complications 101 - About Kidney Failure - August 23rd, 2009
- The Sleep Bolus - August 18th, 2009
- The Dirty Truth Behind DCCT - August 16th, 2009
June 21st, 2007 at 8:49 am
Adult male-is doing this without even knowing it is a fad. He is NOT doing it for weight loss but for the lack of funds and lack of energy to work. It has gotten to be a vicious cycle and his marriage is falling apart. He has orange diarreha and bathroom issues all day. His wife is loosing it and does not know how to help him see he needs help. He won’t work and help with bills becasue all he wants to do is sleep. How can I advise her? I am printing what I find about symptoms but so far very little. Thanks for letting me vent!
June 27th, 2007 at 7:48 pm
I was unaware that this kind of behavior was recognized as diabulmia. You could say I am a “recovering” diabulimic. It has taken me a full year to recover. Omitting insulin began last February and I noticed how quickly I dropped weight. At the same time, I put myself on a “raw” diet. I was terribly thin (people said they could see my ribs) and had no energy. At the time, I was fitting into really small sizes and even those were hanging off of my waist. It felt so good to fit into these sizes, but inside I was a wreck.
The process of getting back to “normal” was a definite challenge. Going back on my insulin, I experienced horrible weight gain (60 lbs in 3 weeks). So miserable!!! Overeating, exhaustion, extra weight gain, and depression were characteristics of regulation. No, I am not going to sugarcoat what it takes to be healthy. I have made such wonderful progress and no, I am not superskinny and yes, its frustrating not to fit in pants like I used to but I am alive.
This experience has taught me a lot about myself and appreciate the support from family, friends, and others who encouraged me to cure, the healthy way. I feel that I have definitely arrived!!! Without them, I wouldn’t be here. And I want to be here.
I have given you a brief synopsis of my experience. Hopefully, my story will inspire others to cure and I am here for support. Thanks for listening.
July 1st, 2007 at 9:24 am
In response to BJ’s comments, men can develop diabetes related eating disorder (aka diabulimia) but far less often than women. Nevertheless, as you aptly point out, its effects can be devastating physically and equally as so with relationships. One other thing to remember is that such behaviors may also mask a deeper problem with mental health that are more common in persons with diabetes, including clinical depression combined with diabetes burnout. Not having access to experienced health care providers who can help him with these issues is what tends to prevent effective recovery for most who suffer with these not-that-uncommon problems.
July 1st, 2007 at 9:32 am
In response to Nicole, I tend to look at eating disorders in persons with type 1 diabetes (aka diabulimia) as something to “manage” as opposed to something that gets “cured”. The struggle you have with this may remain with you for some time to come. The weight gain you describe is at first due to having been in a state of constant dehydration due to the chronic lack of insulin. Restarting your insulin therapy in full lowered blood sugars enough to slow down the constant water loss you were experiencing. Your body will have been making large amounts of anti-diuretic hormone (ADH) to try and protect from further water loss. When the problem is “corrected” by improved blood sugar levels, it takes some time (days to a week or so) for the ADH to re-adjust. During that time, you tend to retain more water than usual, hence the rapid weight gain and edema, commonly referred to as “diabetic edema”. Secondly, you added other tissues (fat and muscle) which had been lost over the prior weeks of months due to insulin omission. This will be real weight gain, but it’s your bodies attempt to restore a balance from a previously out of control situation. I hope this helps.
July 20th, 2007 at 10:51 am
This is real and something I suffer from! First of all…taking care of diabetes is EXPENSIVE!!!!! My pump ($1,500) is finally paid for but the insulin, pump supplies, and testing supplies add up quickly, not to memtion the cost of the thyroid Rx, the Blood Pressure Rx, and the antidepressants!
As for the diabulimia! I had no idea that it was a “condition” much less had a name! I don’t know any other diabeteics. I thought I had figured out a way to “beat the system!”
I was diagnosed two years ago at the age of 26. I was recently married and had given birth to our first child abt five months before my diagnosis. I was diagnosed with gestational diabetes during my third trimester and kept very tight control of my numbers! After all, it wasn’t abt me!
After our perfectly healthy baby boy was born, (and after not following up w/the endocronogligist, figuring I was free of the disease now!) I began to lose the “baby weight”. I was smaller than I had ever been weighing in at 125lbs! However, I felt deeply depressed, I was thirsty all the time and stayed in the bathroom! I was getting so many compliments on my weight loss and was loving the fact that I was a new mommy who was able to get the weight off. I loved fiiting into the smaller sizes!
After abt a year of loosing, it was apparent that this weight loss was not normal. I saw my family dr and I was an emotional, mental and physical wreck! After running some test, my dr called the next morning and asked me to come in as soon as I could, and explained over the phone that I was suffering from type 1 diabetes and he couldn’t believe with a glucose level of 600 that I hadn’t been hospitalized!
The weight gain was awful! After starting insulin therapy, three days later at my follow up visit, I had gained 11 lbs! That’s 11 lbs in three days!!!!! None of my clothes fit, my face was swollen, and I couldn’t wear my dimond and wedding band b/c my fingers were so swollen! I was so very bloted and was slipping deeper into depression. It was so overwhelming.
I delt with the weight gain and kept very tight control of my numbers and just four months into the disease, we found out we were expecting our second child! My drs were so surprised at how well I was doing! They warned me of the dangers to our unborn child and continued to be amazed at each visit!
Abt a year ago after our second, perfectly heathly baby boy was born, I stopped using my insulin pump as a way to lose the “diabetic-baby weight”! After abt two months of this I wound up in the CCU for three days with DKA. I don’t even remember much of the first day! That was enough to get my attention and I got back in the game.
Abt five months ago, after fully recovering from the DKA, I joined Weight Watchers and have since lost 37 lbs! However, I’ve recently slipped into the habit of getting by on my basal rates. This, combined with excessive training for my first 5K (to benefit none other than juvenile diabetes research) has helped me lose weight much faster than my fellow weight watchers. Its so easy to do without anyone knowing. I have an appoinment in a few weeks and will tighten up as to show her some good numbers and then the cycle starts all over again. I know when I get to my goal weight, I’ll gradually get back to where I need to be as far as my bolus rates.
I can’t talk to anyone abt this for fear of being fussed at as I feel like no one understands!
ALL advice is welcome.
October 2nd, 2007 at 12:24 am
GOOD LUCK ON THE TEST.I AM ONLY 12 JUST STARTING DIEBETES.
October 2nd, 2007 at 10:28 am
I too have this problem, although it’s the first I’ve heard of it actually having a name. It started when I was 13, when I was at a school music function and accidently forgot to take my insulin before a meal. When I realized I could skip my insulin, still survive and that I was managing my weight in addition, it became a way of life. It is only the grace of God that has kept me alive. I have had hemoglobin A1C scores of 12-15 before. When I got married and wanted children, I managed an A1C of 6.5 for months and delivered healthy boy/girl twins. I went right back to my old ways however. Now I am on an insulin pump, and doing better, but still reluctant to test and keep things normal. I’ve put on nearly 80 pounds since I gave up skipping insulin, and I’m dealing with my weight. However, after over 20 years of abuse, I’ve had several eye surgeries, I am losing the feeling in my toes, and my kidneys are being held together with lisinopril.
October 13th, 2007 at 5:29 pm
I also have so-called ‘diabulemia’. i’ve had it for about 1 1/2 years and can’t seem to find a way out. Last time my A1C was checked it was about 17. I have been hospitalised with DKA about 8 times in the last 9 months, including a stretch of 1month in hospital. I’m 17 and so far have had no problems with diabetic complications. i have been underweight with this, however my weight fluctuates greatly. I was just wondering if anyone can give any advice about stopping the spiral. Unless i feel VERY unwell, i do not take any insulin. do anti-depressants work, or does it feel fake? i was offered them, but refused. Advice…PLEASE!!
January 15th, 2008 at 3:34 pm
I’m a producer on the award-winning documentary series “Secret Lives of Women.” This program airs on WEtv (Women’s Entertainment) and we are doing an episode on eating disorders. We want to profile a female who is currently struggling with Diabulimia. Anyone interested should email: cdeukmejian@kaosent.com
February 15th, 2008 at 11:42 am
Kelly I would love for you to email me …. nallysgifts@adelphia.net
http://www.myspace.com/jaimiehernandez
I too have fought against weight gain for the past 12 years with type 1 (& a quarter…my doc says)….. I think maybe there are different degrees of diabulimia……I was always such a “fighter” for diabetes and diabetics …..I finally lost 28 of the 60 or so pounds I had to lose in ‘06, in ‘07 I hurt my hip and back and just could not exercise the way I was and started to lose hope more so than I even have in the past years with diabetes…….as each pound crept on I felt as if “My fight” was gone……..and depression to a degree set in…….I finally have relief in my pain but now over the past year have gained back more and then some leaving me about 70 pounds heavy at the moment…….I tinker with thought in my head all the time about if I should take my insulin today and that maybe that would be the easy way to finally get rid of the guilt and frustration of fighting it all these years…….I have let my sugars run on the higher side before and dropped maybe 5-10 pounds and then I catch myself and tell myself that I can’t do this because of my kids and what it will do to my body and then I get in tight control again…….but lately this cycle of good/bad seems to be getting worse……it is a mind game…..and I can see where it can take over if you are not careful……..
okay I’m rambling……..although I have never been full blown into diabulimia as to where I have ended up with sugars super high or in the hospital I can certainly understand mild forms of it and my heart aches for anyone in my situation with weight and feeling like your body just does not match the fight in your heart…….you want to reach for that easy way out and I think about it often………
November 6th, 2008 at 4:12 pm
I am a 19 year old student suffering from ‘diabulemia’…in the past 12 months i have been admitted to hospital around 9 times with DKA. I hate feeling fat and not taking insulin seems like the only way to lose the weight. Even though it makes me feel very ill and always results in me going to hospital, i cant help but continue to not take my insulin!!!! Im going on a diabetic pump soon but im worried that its not going to help!
November 29th, 2008 at 8:13 pm
Reading all of these posts made me cry because I am one of these people too. I feel like there is no way out except going away for like a year to recover but that just isnt possible in life. I am 21 and have been doing this since I was 16. I am on lisinopril and take meds for nerve damage in my feet as well. I wish someone could help. I know I should be able to but its a wicked cycle. I often am very depressed and sometimes dont even want to live. If anyone has advice or help that is great. I feel better knowing I’m not the only one, but not better that we will most likely die young without help.
December 14th, 2008 at 11:03 pm
I am a diabetic (type 2) but I have a niece who is type 1 and I suspect she has diabulemia. I would appreciate any suggestions on how to get her some help. She is over 18 so even if my sister calls the paramedics she refuses treatment and my sister has been told they can’t do anything as long as she is refusing treatment. Her mom and sister live in fear that they will come home one day to find her in a coma or worst.
December 23rd, 2008 at 7:37 am
I’ve been looking at some the posts over the past few months. There are threads of truth about diabulimia that emerge in each one. For those who have engaged in insulin omission, this is an ongoing problem for at least half of you. The other half is most likely is able to keep it in check or just under the surface, but the knowledge is still there waiting for a weak moment to pounce. The fact that insulin use maintains body weight is a central issue. Insulin is a complete anabolic hormone (meaning “body building”). This includes both muscle AND fat.
Some of you have gotten back on insulin and lamented the weight gain that came with that (although you may have been seriously underweight before consistently taking your shots again) but appreciated the physical well being that returned.
As far as what can be done, there are short term bridges and longer term solutions to consider. As I said, finding a psychologist with experience with this is challenging. One of our authors on this post, Barbara Anderson, is one of those individuals. All psychologists have familiarity with eating disorders. The key is to really attack the problem as an eating disorder while recognizing that insulin omission must be dealt with during the acute treatment phase. In teens with diabetes, I recruit the family to step up and administer the injections to the patient. I liken it to using a cast to support a broken bone providing it time to heal. But even if behavioral management is successful and help is found for the insulin administration, the typical diabulimic will have these thoughts running through their mind for years and require ongoing help and support. Recidivism is high after successful treatment. It’s this relapse rate that leads up to alf of all these people to develop serious diabetes related complications at an accelerated rate with serious consequences as was pointed out in a more recent post.
It has not been explored very well whether or not the nutritionally deprived state that many diabulimics exist contributes in some way to the accelerated rate of onset of complications. This deprivation often includes a wide array of micronutrients lost in the purging of calories through the kidneys. Perhaps these deficiencies in some fashion increase the risk of complications. The answer to this is unknown at this time.
In summary, identify the problem of diabulimia in a non-judgmental way. Recognize it as an eating disorder unique to persons with insulin requiring diabetes. It does seem to affect more women than men, but men are not immune as the first post in this thread proves. Family and friends are needed to support the diabulimic, especially when the patient is a child or teen. This often includes administering insulin injections or reviewing bolus histories on pumps. Finally, even with excellent treatment there exists a high risk of relapse and ultimately the development of permanent long term complications at a relatively short disease duration.
December 27th, 2008 at 10:45 am
I can understand the frustration with trying to lose weight the “traditional” ways - whenever I do, I fight issues with low blood sugar, which ends up de-railing any progress while you’re forced to eat to bring the levels back up. Terrible to admit, but it has been tempting to try this for a quick wieght loss, but what is a ’safe’ (for lack of a better word) level to let your sugars rise to to drop 5-10 lbs quickly? Truthfully, I’d be afraid to go overboard.
January 14th, 2009 at 6:09 am
I have been looking at these posts and feel for all Type 1 diabetics struggling with weight.
I am a professional 35 yr old male, so probably not the headline demographic for this issue. However, having spent my life as fairly athletic and never overweight, since the birth of my daughter my gym regime has all but ended - I have hence gained about 16 lbs.
I am now training again, and dieting strictly and sensibly, but frustratingly, the more I diet the more weight I gain. I put this down to my blood sugars being consistently lower, therefore my system is not “wasting” as much fat/energy.
This has led me to consider reducing (not skipping) my insulin for say 4 weeks, til I reach my target weight. I will then resume my insulin intake for tight BG control and continue training 3 times a week at the gym to avoid gaining weight again.
Does this sound reasonable, risky or stupid, given my my problem is shedding the weight? I am confident I can maintain my correct weight once I reach it.
I would welcome your thoughts / advice.
Best wishes to all…
January 22nd, 2009 at 5:03 pm
kaite & brian,
Diabulimia is a viscious cycle; one that you should avoid at all costs. Once you enter into it, the chance that you will recover from it is so far gone and your body will pay the consequence. I hope that no one will reply to your posts regarding useful information on how to ommitt your insulin safely. There is no SAFE way to omitt your insulin. Appreciate that your body is physically able to do the activities you enjoy. Take care
Michelle
January 23rd, 2009 at 5:21 pm
I hesitated to comment on “diabulimia” as I want the media to stop using this term, for it seems to trivialize two very serious conditions–diabetes and bulimia. However, my valued colleague pediatric endocrinologist Dr. Steve Ponder has asked me to write a comment , and that said, I certainly have seen the suffering that can come from being caught up in this vicious cycle. Manipulating insulin to control one’s weight or shape can become highly addictive. And for this reason, prevention is very, very important!
What steps can be taken to help prevnt the addictive cycle of insulin restriction for weight control?
1. For parents, remain involved , in a developmentally-appropriate way, in your child’s insulin administration, especially over the transition to adolescence, when weight gain normally happens with the onset of puberty and physical maturation.
2. For persons with diabetes: Find a diabetes provider (CDE, nurse, nutritionist, physician) with whom you can talk about your frustrations with your body weight or shape. It is very important to have a diabetes clinician who will help you work on your two important goals: (1) healthy blood sugar control and (2) healthy weight. If you are not comfortable discussing your weight concerns with your diabetes clinicians, you need to talk with your parents or a counselor or social worker about finding a new diabetes team. Twenty-five years ago, no one understood how common and addictive this vicious cycle of insulin restriction for weight control is. That meant that in the past, this condition was not identified and certainaly was not preventable. However, with today’s knowledge, it is critical to find a diabetes team with whom you can discuss your weight concerns and any fears about taking insulin which you may have (such as fear of weight gain, or fear of hypoglyecmia). Persons with type 1 diabetes today deserve to be working with a health care team who will help them maintain optimal blood sugar control and maintain a healthy weight! Achieving these 2 goals is possible, although like everything involved in caring for diabetes. this is very challenging, a lot of work, and demands teamwork!
3. For diabetes clinicians: If you are unfamiliar with bulimia, or uncomfortable with eating disorders, or if you feel you need more expertise to help a patient who is struggling with insulin restriction for purposes of weight control, contact a psychologist, social worker, or psychiatrist who is knowledgable about eating disorders. Also, for an excellent, brief and practical guide, read the chapter “Detecting and treating eating disorders in young women with type 1 diabetes” by Anne Goebel-Fabbri, Ph.D., a very experienced psychologist who works in this area at the Joslin Diabetes Center in Boston. This chapter is in the book PRACTICAL PSYCHOLOGY FOR DIABETES CLINICIANS (2ND EDITION), which I edited together with my colleague Richard Rubin, Ph.D. and was published by the American Diabetes Association in 2002.
May 5th, 2009 at 11:59 am
I was diagnosed with Type 1 at the age of 25. It took nearly a yeat to diagnose me as my dr’s disregarded my continuous pleas for help with exhaustion, frequent urination and thirst. All symptoms were a result of my excessive exercise program. Constant training and body building. As a young, fit, female I was appauled at the comments made by all of the dr’s and nurses that trained me in the hospital. Comments included how it will be a matter of time before I go blind or how I’m going to get spots all over my trim stomach (why would you say these comments to a self conscious young female). Scare me into taking care of myself? Well I did take care of myself and managed A1C levels of 5.8% My drs. thought I was in control but how are you in control when your all over the place every day. I had to eat tons to feed my runs when my purpose for running was maintaining weight. I am now 32 and a mother of 6. I have been very fit and muscular throughout the years but can’t get to where I want. I recently went back to work and found myself frustrated and depressed abou my lack of time in the gym and thus resorted to going off the pump (so I can wear pretty summer dresses). I am taking my Lantus and skipping the fast acting insulin. It started becaue in the rush to leave the house with 6 kids I would forget about me. I have thoroughly enjoyed the weightloss but can no longer make it through a 5 mile run without stopping 4 to 5 times. How can I get back on track without the tremendous weight gain? I do not have a supportive husband and am completely overwhelmed with trying to keep up with my kids and my disease. As an athlete I know more about proper nutrition than an overweight nutritionist. I just can’t get past the frustration of doing everything right and still not getting to where I want to be in my athletic endeavors. I need help!