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Diabetes and Eating Disorders Come Together as Diabulimia


May 30, 2008

The desire to be thin can be overwhelming. Few people know that better than Kelie Gardner, who started inexplicably losing a lot of weight during high school. She thought it was great until she discovered the reason—she has type 1 diabetes and her body can’t absorb the nutrients it should. After she was diagnosed and started taking insulin, Gardner returned to a healthy weight. Unfortunately, she wasn’t happy with this sign of improvement. “When I was on insulin, my body was able to start functioning normally,” says Gardner, now 26. “I went up to a normal body weight, but I was used to being skinny. I had the fear of, ‘Oh gosh, I’m going to be fat.’”

While learning about diabetes, Gardner read a book about a girl who manipulated her insulin to lose 10 pounds for prom. “That was something that always stuck in my mind,” she says. “If I wanted to lose weight really easily, I could skip my insulin or use less.” A couple of years later, Gardner, who also suffers from bulimia, started cutting back on insulin regularly and lost 10 pounds. “Everyone said, ‘You look so good.’ I started feeding off of those comments. I thought, if they say that about 10 pounds, another 10 or 20 will be even better.”

Although aware of the consequences, Gardner only injected four or five units of insulin a day—she was supposed to take 23. At her lowest point, Gardner isolated herself in a three-day insulin-free binge and purge cycle. Skipping injections for even this short period of time landed her in the ICU and nearly cost Gardner her life.

Bitter Medicine

Gardner’s response may seem extreme, but according to Dr. Richard Hellman, president of the American Association of Clinical Endocrinologists, medical studies have been documenting the simultaneous occurrence of type 1 diabetes and eating disorders for 50 to 60 years. What’s new is the idea of combining them under one medical term: diabulimia. “Once someone coined the term [diabulimia], all the doctors who didn’t even consider it started linking the two,” Hellman says. “Bulimia everyone understands; diabetes everyone knows about. But linking the two hadn’t been talked about.” In fact, the word diabulimia only surfaced in the last few years. Because diabetics are “purging” calories through their urine, the disorder is generally accepted as a form of bulimia.

“More than 90 percent of adolescents with type 1 diabetes reported missing at least one shot a month to keep weight down,” Hellman says. Because these people skip insulin only occasionally, their problem is considered milder, but it can still be deadly. Hellman says that around 10 to 15 percent of adolescent diabetics suffer from severe diabulimia.

Grace Shih, a registered dietitian and eating disorder counselor at Lucile Packard Children’s Hospital at Stanford, has made it her mission to educate her peers about the affliction. “The medical society knows about conditions of eating disorders and diabetes, but they don’t call it diabulimia,” Shih says. “It’s not yet in medical terminology or medical journals.” And it’s the unknown that is dangerous.

Killer Consequences

It’s too easy to be true: Avoid injections—an already painful task—and drop 10 pounds like magic. But skipping insulin comes with a deadly risk—no one would inject if he or she didn’t need the stuff to stay healthy. Even if a person is diabulimic for a relatively short time, he or she is at risk for ketoacidosis, the build-up of acids in the bloodstream that can lead to diabetic coma or death.

Essentially, people with diabulimia are keeping themselves sick and letting their diabetes kill them. Even if they manage to control their ketones by skipping only a few injections, the long-term effects of shortchanging their bodies can be devastating, with consequences ranging from nerve damage to kidney failure to death. According to Hellman, people with diabetes who forgo their insulin can suffer from diabetic retinopathy, a condition in which blood vessels in the eyes swell or leak and abnormal vessels grow on the retina. Over time, both eyes can lose vision.

Mary (not her real name), 23, lives in the U.K. and has been diabulimic for almost five years, beginning only three months after being diagnosed with diabetes. “I lost my eyesight completely,” she says. Cataract surgery has since fixed her eyes, but she’s still very far-sighted. “I’m killing myself every day,” Mary says. “I’d be the first person to turn around to anyone [who skipped insulin] and say, ‘Sort yourself out, you bloody idiot! How can you act in such a selfish way?’ But I just can’t stop.”

The Search for Support

Until recently, willfully untreated diabetes wasn’t documented as an eating disorder, making it hard for people with diabulimia to get treatment. Gardner had difficulty finding anyone who understood her specific issues. “When I started doing research on eating disorders and diabetes, there just wasn’t much out there,” she says.

Gardner tried one-on-one therapy but didn’t see results quickly. Finally, she found a program called Quest in Santa Rosa, California, where the director was working on a dissertation on diabulimia. “I felt like that was a miracle,” she says. “This person understood what I was going through.” Gardner admitted herself to the 12-week intensive outpatient program, but she didn’t walk out cured. “I still struggle,” she says. “But I’ve learned that even if I have a bad day, it doesn’t undo all the good days or hard work that I’ve done.”

Mary tried a 15-week group therapy program, but didn’t find it as encouraging. “The group was for anorexics, bulimics, and EDNOS (Eating Disorder Not Otherwise Specified)—no one there had any experience with diabulimia or diabetes,” she says. “My bulimia was the focus, whereas I mainly needed help with my injecting.” In other words, while Mary could get help for her bulimia, she found it hard to find counselors who had experience working with people who regularly skipped insulin.

A Way Out of the Dark

Now that diabulimia is medically acknowledged, doctors and patients hope for a brighter future. Mary dreams of a normal, happy life with a family, but says she can’t have healthy relationships with her disorder. “I’m lying all the time to everyone,” she says. “I lie about being healthy. I lie about the amount of food I’m eating. I can’t have a real relationship with anyone because I don’t have a truthful relationship with myself.” But she doesn’t want sympathy—she wants help for herself and everyone else suffering. “If you’re worried about anyone with diabulimia and they say they’re fine, they’re lying,” she says.

Hellman says a better grasp of the illness will bring the most success. “People need to understand [that diabulimia] is not the mark of a defective personality,” he says. “It signals that you need more understanding and patience.” The medical community continues to expand its knowledge of diabulimia, which will hopefully lead to more successful treatment options and possibilities for sufferers to heal.

Recognize the signs

Here’s what to watch for if you suspect a type 1 diabetic you know could have diabulimia:

  • Vulnerability to an eating disorder: “A person who is very obsessed about weight is someone more at risk to fall for an easy way out,” says Dr. Richard Hellman, president of the American Association of Clinical Endocrinologists. Watch for people who eat a lot but don’t seem to gain—or even lose—weight.
  • Personality changes: “Watch what they say,” says Grace Shih, registered dietitian and eating disorder counselor. “If the blood sugar is high or low, they don’t feel well so they won’t seem like themselves.”
  • Regressing back to symptoms of undiagnosed diabetes: When people have poor control of their diabetes, they have excessive thirst and urination, feel weak, and think less clearly. If they aren’t taking insulin, they become nauseous, have abdominal pain, and vomit.
  • Don’t make judgments: It’s much more helpful to be understanding. Ask questions like, “Are you taking your insulin?” and “Do you ever skip it? Why?” Encourage them to get help and be healthy.

Treatment tactics

Shih believes treatment must be three-fold to be effective.

  • An endocrinologist must be involved. An endocrinologist is a doctor who specializes in diseases that affect glands and hormones in the endocrine system. “[The doctor] would have to know how to treat diabetes and adjust insulin,” Shih says.
  • The patient needs the help of a dietitian. The dietitian would help the diabulimic with nutrition. He or she would ideally have knowledge of eating disorders as well as diabetes.
  • The diabulimic should see a therapist. This doctor would need to understand eating disorders and have medical knowledge of diabetes and insulin as well.

Essentially, each specialist must have a working knowledge of the other fields. Shih’s Web site, gracenutrition.org, launched in October 2007, can help diabulimics find the help they need.


Categories: Blood Sugar, Diabetes, Diabetes, Diets, Food, Insulin, Losing weight, Type 1 Issues



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Comments

Posted by Anonymous on 31 May 2008

I did not read the article. Could not get past the label "Diabulimia". How rediculous! Not the situation, but the label. Get a grip.

Posted by Anonymous on 31 May 2008

This is one of the best articles I've ever read on this site, and I frequent it regularly. Well done Miss Blanchard, I hope to see more of you in the future.

Posted by Anonymous on 31 May 2008

A very well written article and so informative. I had never heard of this eating disorder. Thank you.

Posted by Anonymous on 1 June 2008

This piece was really informative. I was really surprised (though in retrospect, I shouldn't have been) to learn that people would manipulate a medication—one that keeps them ALIVE—to achieve a more personally-gratifying physique.

Now I want to ask a friend of mine with diabetes if he has ever heard of or experimented with this. Terrifying.

Well done.

Posted by Anonymous on 1 June 2008

Wow. This outstanding piece of journalism nearly brought me to tears. The author, Miss Blanchard, is clearly exceptionally talented at any and all that she writes. It's like everything her pen touches turns to gold. Wow. Perfect 10.

Posted by Anonymous on 2 June 2008

Intresting and well informative article. I only have one issue: neither Bulimia or Diabetes is well known by the mass public. "How do I know this?" you may ask. I have Type 1 Diabetes and I've been ask questions such as "Is that like AIDS?", "Can I get it if you touch me?" and "When are you going to get rid of it [the diabetes]?". I mean seriously people, in this day of ADVANCED knowledge and the INTERNET, HOW could such ignorance show up and persist? "HOW" I ask you.

Posted by Anonymous on 2 June 2008

I dealt with this disorder for 4 years between ages 17-21 starting 2 years after I was diagnosed. At my worst points I only took 1 shot a week. Some of the symptoms listed weren't the same with me. I never vomited and I had more energy than with insulin.

It didn't start on purpose. I just got lazy about my injections and started losing weight. It took several months for it to click with me what was happening. My mother would drag me to my endo appts and he would gripe at me the whole time but it fell on deaf ears. I ended up leaving that doctor because we were so fed up with one another. At one point my mother pleaded with me telling me I was killing myself and I shot back "At least I'll make a beautiful corpse!"

When I was 19 my grandmother died and I had just taken 2 shots on consecutive days. At the funeral home my aunt said to me that I had put on a couple of pounds and looked good and I completely freaked out.

It's been 10 years since I started taking my shots again and, while I'd like to be thinner, I realize how sick I was and I don't want to do that again. I tell people about diabulimia and they don't realize how bad it really is.

I'd also like to comment that a diabulimic is going to see any questions about their insulin as an attack. It is impossible to avoid seeming judgmental but defensiveness about the question could be a sign of a problem.

Posted by Anonymous on 2 June 2008

I can see the value of having a name for any disorder. For this concern, I don't see it merely as bulimia, and I think to properly treat or even communicate the condition by health providers would seem to require an understandable term. Regardless of the quality of the term, I was enlightened by the article and appreciated not only its news value, but the inclusion of clues for love ones, and recommended medical response makes the article more complete. I also appreciated the positive approach.

Posted by Anonymous on 3 June 2008

I have dealt with this as a part of anorexia about 8 years ago as a 33 year old. My crazy mindset was---what a great way to lose weight! The problem was that I ended up in lactic and ketoacidosis and came very close to death. I had to have IV insulin b/c the injected was not working since I was almost to the point of no return. It is a very serious problem that needs to be publicized!
Great job!

Posted by Anonymous on 3 June 2008

I have been diabetic for 14 years, and I too was only taking my long-acting insulin daily; never my short. On top of that I was eating McDonalds just about every night (= about 100 carbs, which would be about 10 units of short acting for me, which is quite alot for some), and running around at work like crazy, which could have thrown me into ketoacidosis, because if you exercise while your blood sugars are high, it can actually raise them more. I lost 15 pounds in a week or two. It was noticeable literally overnight. I walked into work one day and 5 people commented me on my weight that day. I didn't realize what I was doing at the time, but I sincerely hope that I don't have to pay for it in the future, and I hope that the other diabulimics out there get much support and help. This sounds self-centered, but no one can really understand the disease unless they have it, so every family member should make an effort to learn as much as possible.

Posted by Anonymous on 5 June 2008

wow i thought i was the only one who did that. im diabetic for 9 yrs now. my weight is normally 85 then went down to 77 when i had my diabetes. when i started injecting, it went up to 105. i felt fat because i have a very small body frame and bone structure. i skipped my insulin at times to become thin or at least 90 lbs. after 2 yrs of skipping insulin, i had cataract operation. a year later, i had neuropathy. had ketoacidosis twice in 1 yr, heart palpitates. i had a body of a 60 yr old woman when i was only 25 then. i got scared bec i couldnt walk so i regularly took my insulin. 6 months later, i got pregnant. i really took care of my body. since then, my weight is constatnly at 100 which is ideal for me. it took me years to get used to the right food to eat. so even if i inject regularly, my weight doesnt fluctuate bec i really had to discipline myself.

Posted by bishman on 6 June 2008

After I found out it was type 2 I had and the best way to keep evrythuing at bay was to eat right and workout, well I went overboard going from 289 to 175 in about 8 months. They I was told to "lighten" up and instead of keeping it off it was like the go ahead and enjoy yourself, don't worry abouit. Well some of the weight came back and it has lead to my feet wishing I could try them in and well needless to say I'm trying even hardrer now to reverse what was told me.

Posted by Anonymous on 11 June 2008

I don't understand why they call it "diabulimia". It's insulin manipulation! That is not bulimia. I see it as two separate problems, diabetes and bulimia. Now why they have renamed it from the two names into this "new" disease, this I don't understand. If this gets more publicity, I am sure more and more girls, who would have never considered this as a "diet" will now use this method to lose weight.

Posted by Anonymous on 17 June 2008

I think "diabulimia" is a slow death--eventually suicide--for those who do this to their bodies. They refuse to take the very medication that helps keep them alive. This I find very difficult to understand. I don't think these people have any idea what they are doing to their bodies. What a sad world we live in to desire something so bad (being thin) in exchange for health, well being and eventually life.

Posted by Anonymous on 18 June 2008

Being aware of this terminology and affliction for a few months now, I am personally surprized at many of the responses here. The issue is the affliction, not the terminology, or the relation to bulimia or anything else. Diabetics skipping out on insulin for weight-loss, that's the problem. Being a diabetic for 12 years now, I had to deal with the disease in my teenage years. I can admit to skipping out on insulin to lose weight sometimes, but not often. Being male I also know that it's not just common with females either. The backlash of feeling so terribly sick was good enough to prevent me from doing it again. We know what will happen to us, but pushing will not help whatsoever. People who skip their injections need support and understanding above all. Pleas for change will fall on deaf ears, I know this first-hand. Having an article such as this is one of the first steps to getting attention called to the issue and getting help to those in need. Good on ya!

Posted by Anonymous on 10 July 2008

This article is very informative, well written, and entertaining. Very well done. I had never heard of this condition, and I am glad to know now. Thank you, Miss Blanchard.

Posted by Anonymous on 31 August 2008

I think the article and the issue being recognized is great...however, if you or someone you know is suffering with this....WHERE DO YOU GO??? Eating Disorders Programs aren't the right fit...they don't get it. Residential Programs...I haven't found one that recognizes and treats this specifically...just those that "will" as part of a traditional eating disorder program.... Does anyone know of a place that can help???????

Posted by Anonymous on 20 September 2008

I'm 19 and have had Type 1 for little over a year - I'm a relative newbie. I'm currently suffering from diabulimia, and while I'm an intelligent person aware of the consequences of my actions, I've become addicted to behaviours that have already shortened my life.
I constantly need to go to the bathroom, my thirst is insatiable and I get so weak I have to nap for around four hours in the afternoon. My life is slipping away before me.
That is why I'm throwing myself into therapy. Here in the UK, being diabetic means I'm assigned to a diabetic clinic, and next week is my first meeting with their resident clinical psychologist, who I hope will help me.
I suggest anyone who wants help with diabulimia do the same or similar - there are many specialists out there, we just have to seek them out by asking at a clinic or hospital.
Good luck to anyone who is going to start getting better, we'll be doing it together :)

Posted by Anonymous on 13 October 2008

you guys need to get over what they call it and realize its an actual illness. i should know. i have been suffering from it for 2 years and i cant find any help. you need to have had walked in someones shoes before you can start talking about how you think this is crap and everything

Posted by Anonymous on 15 April 2009

this article pretty much sums up my life. I know exactly the consequences of my actions, but im terrified of taking my insulin for the risk of gaining weight. I wish there were more resources out there for people like me to get help, because i don't want to die young, but it seems thats where im heading.

Posted by Anonymous on 17 December 2009

In response to "WHERE DO I GET HELP?":

Check out Center for Hope of the Sierras. It's a residential treatment center for women w/ eating disorders but they have a specialized track just for eating disorders & diabetes (diabulimia). The program is run by a pediatric endocrinologist and a registered dietician with a PhD in nutritional biochemistry. Both have a great deal of experience dealing with eating disorders and diabetes. Center for Hope also takes insurance and the staff is amazing. You can call the intake coordinator Meghan 775-828-4949 or visit the website www.centerforhopeofthesierras for more information.

Hope this helps!


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