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.
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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!