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Diabulimia

I recently read an article about Diabulimia. It is a form of bulimia that affects young diabetics. Those who are affected give lower doses of insulin so that their blood glucose levels are higher. When your blood glucose is high you tend to lose or keep weight off. I did this for 4 years while in college. I have just recently started to check my blood sugar again after years of denial that I needed help. I am hoping and wondering if there is anyone else out there that has experienced this or knows someone who has done this. I finally feel relieved that I know what I had and feel like I should spread the word.

there is a poster on the Myspace diabetes boards who has suffered through diabulimia. you may want to visit and join, they're a great bunch!!

Welcome JC! How did you talk to your doctor about getting back on track? I know we have a lot of members in similar positions who are scared to go back to the doctor and get help getting back on track.

It took many years of pushing from family and friends. I was diagnosed with autonomic neuropathy in 2000. At that point I was so bad, I was seeing a cardiologist at the age of 21 and that was scarey. I have had several health problems . . . 5 root canals, constant pain at times in my feet, high cholesterol, and the list goes on. I had to get back in the habit of testing. I had a continuous glucose monitor given to me by my doctor. I had to test constantly so they could compare results, so it forced me to test. I realized that testing was not so bad. I feel better having better blood sugars! I do well now . . . exercising and eating right. my A1C was 14 for 2 years. I am now at a normal level and it feels great. I think a lot of my problem was a control issue. (Even though I lost control.) I am in control of my life again and that feels even better!!! p.s. I want kiddos too. That was a BIG motivator.

I have also been on the pump for 9 years. The pump literally SAVED my life.

I myself have been dealing with Diabulimia for 2 years, and I know I need to stop but I really have no idea how, and it's starting to scare me. I tell my doctors all the time that I don't take my insulin because i'm afraid of getting fat but all that i get from them is that I need to do it, but no one understands me too much, it 's that hard to just pick it up again and start checking my sugar and taking my shots...if anyone has any advice, please give it cause i could really use it.

How are you staying out of DKA, if you are not taking your insulin? You must be taking least SOME, I would think.

I went for several years w/o doctoring, but got into trouble from not taking ENOUGH. I was just getting the older N & R insulins. Now I am on Lantus and Humalog, OTC in Canada but I need an Rx for them here in the US.

(*&*( GOMER

Are you on the pump? That was the first thing that helped me. It forces insulin into your body. In the beginning I was forgetting to give insulin when I ate, BUT the pump kept a steady stream of insulin, which improved my overall health. You have to get over having the pump on your 24 hours a day. If you wear the pump and then stop . . . You go into diabetic DKA faster and that is no fun. It really has kept me on the straight and narrow. I truly had to want to get better. You have to force yourself. I bought the meter and kept one at work and at home. I have one in my purse too. Those mini meters are 20 bucks a pop. I am doing very well now. If it weren't for the pump . . . I hope this helps. p.s. TELL people who will bug the hell out of you, that you want to be better!!! That will help too.

I am healthy now. A1C is normal. Phew. It took a while. You would be surprised how little you go into DKA if you work with it. I don't want to give away anything so that others don't do what I did. I went to the hospital once in 1999 with DKA. I honestly don't know how I avoided it. I am SOOOOOO grateful I am better and on the right track. Diabulimia is harsh. The pump saved me. It forced me to do what I should have done before. Thank god!

I have been suffering from diabulimia for about a year now. I have only used my insulin consistently for about a month since I've been diagnosed. I just got out of the ICU for DKA about a month ago and I'm right back to not using my insulin. I will maybe use a small amount once a week to get a little energy. I have an insulin pump but have only used it for a few days. I just can't deal with the weight gain I experience when I use my insulin even though I feel horrible when my BS is always above 600. I quit my job because I don't have the energy to get up and go to work. I can barely get out of bed most of the time. I have a six year old daughter and I struggle every day to take care of her which isn't fair to her. I know I need to start taking care of myself but it's just too hard. I don't know what it's going to take to get myself on the right track.

How about thinking of your 6 year old daughter that needs you! That should be enough to get you back on track.

You know, if you start using your insulin like you should, you will start getting more energy and then in turn you will start moving around and doing more. That should help you with not gaining weight.

Good luck to you and I pray that you will START TAKING YOUR INSULIN!

Breezeee, I know how you feel (without the whole daughter part). I am constantly battling doing ANYTHING because I have no energy. I am afraid I will lose my job from the FEW times I even call out. But you do have a great gift, and that's your daughter. You have to sit back and think that you do not want her to live without a mother. I lost mine at 13 yrs old, and it was rough. Life is not the same without your mother beside you. Think of her, if anything. Think of the pain she will go through and I am sure you def. do not want her to go through it. Realize now you live for 2, and you must gain the strength to take care of yourself... I hope you gain all the strength in the world to change your habits and begin a new life. Maybe explain diabetes to your daughter, and she might even push you. They tend to understand in a stronger sense, and might become your guidance.

I struggled with diabulimia for about 15 years. I never realized what I was doing to myself until reading about it on the internet. My doctor was less than helpful and I wound up in DKA in the hospital about once every 3 months. Finally, when I realized the horrible cycle that I had been putting my body through I decided to take control of my life again. Meeting my now husband and wanting kids were big motivators for me. I finally got myself a new doctor who wanted to put me on the pump immediately. I now have been on the pump for 4 months and love it. I did gain some weight but have trimmed down again on my own. It feels great to test my blood sugar and see a good number. I think that some of the reason that I lapsed into diabulimia is that my family has an obsession with weight. My mother always used to call me "solid" instead of chunky or fat. I began to see very quickly that if I didnt take as much insulin as I needed that I could eat anything and not gain weight. I also felt that my diabetes was something that i had control of and no one could force me to take insulin. What I didn't realize is that the diabetes controlled me for many years and I spent way too much time in a hospital bed. I was very fortunate that I do not have any complications from this...at least not yet. If I can give any advice it would be that help and support are very important to a diabetic. I was punished as a child for high blood sugars and was told that I couldnt eat cake and ice cream at my own birthday parties. When I became a teenager I grew very resentful of my diabetes and those who were around me. It took the loving support of my husband to see that the person that was being hurt the most was me. He didn't critisize me for my past and said we needed to focus on the future. He saved my life!!! Thanks Matt, I love you

Hi socialworker, I am glad you are doing so well now. That was a great story and well told.

Why would any reasonable adult punish a child for high blood sugars? I am just constantly amazed at people who ever think that a person without a working pancreas is ever going to have the blood sugars of a non-diabetic. No wonder you rebelled.

Thanks for the reply abcat2000. I am a veteran of diabetes. I was diagnosed at the age of 5 and am now almost 32. You name it and I have probably been through it. Being diabetic such a long time ago I think that people were very misinformed and still are somewhat. I think that my parents meant well but just didn't have the education about the disease. They believed that if my bloodsugar was high that meant that I ate something that I wasn't supposed to. I spent many years being very resentful and angry about that. Through my education as a social worker, I have been able to work through my emotions and recognize that I deserve to be healthy and that destroying myself was not helpful to anyone. I still have times where I think my life could have been much easier but also realized that I would not be the person I am today without my life happening exactly as it did.

Is that what they call it? I originally lost weight all by myself, working out and following the diet plan but taking insulin just made me gain weight... so I would stop injecting. And I have kinda stayed in that routine, and now I am suffering for it... it leads to a lot of complications. It's a delicate balance between your health and the way we look or want to feel (weigh). Now I am thin, kinda boney but messed up my digestive system and have a little pop belly because everything I eat makes me bloated... the smallest things. I hope you have decided to take care of you....

Why the heck does insulin make me fat? I don't understand the medicine behind it. I have a pump to that I can better mimic a real pancreas so why should I still have to compensate by reducing my doses? I'm sick of ppl asking if I'm type 2 when they find out I'm diabetic... i'm not fat fat, just bigger than my twig of a sister.

Insulin helps sugar enter cells in the body, and if you have a lot of sugar and a lot of insulin, that equals too much energy which the body stores as fat. That is why people who take insulin tend to gain weight. That, plus in the time period of when you arent using enough insulin, your body burns pure fat in order to get energy, so that makes you lose weight and creates an acid called ketones.

It is a vicious cycle, but you can overcome it by sticking to a good diet and excersizing. Its harder to do than just not giving insulin, but in the end your eyes, kidneys, and feet will thank you.

If your blood sugars are high but you do not have ketones could that still cause you to lose weight?

You still are making ketones, altho they may not be at levels that will show up on a ketone strip if your sugar hasnt been high for long. People who diet and lose wieght will have a small amount of keytones in their system, low enough that it wont read. The problem with diabetics is that with a high sugar, ketone levels go from 0 to way too much way too fast.

Wow, I have never seen so many posts for a topic like this one has set off. I read about the same disorder too awhile back. I can definately understand the frustrations, the trials and the tribulations with Diabulimia. I maxed at 350pds at the age of 18 years old. Diagnosed with diabetes 2002, they thought I was type 2 for the longest because of my weight. Bringing it down pretty safely, supervised, I never felt better. I lost 150pds in a year, 25 more go off and on. I am no longer "the chubby kid" or "fat boy". But then, when I was put on insulin being officially diagnosed with type 1 diabetes. I was put on insulin only. I started to gain weight fast. I never wanted to be that kid again. Realizing the ability to lose weight if you did not take insulin, was a huge deal. It was like having that super power to change your life...but with great power comes great responsibility. Responsibility I lost. I still stuggle at times when i see my weight go above the "guidelines" for a 6'0, medium built male at my age. I see that I could lose 10pds in 2 days...danger my friends. It is hard to think. Because you think just that, its just a day without it. I can hold off on it, pee it all out and bam weight is gone. With a society like ours sooooooooooo focused on weight...being too skinny...too fat...eat this not that...etc...etc.... it is no wonder you cannot always think...am i the right weight? at times too, i lost insurance and as it scared me, it delighted me a bit knowing...ok i will not gain anymore weight again....ever... but recently... i have found that it is possible to maintain and even tone your body with insulin.........it was like a revalation....seeing star athletes with type 1 lookin good. like jay cutler (ok, he is not playing well, but he is an athlete) or that body builder guy who is a champion. team type 1 bycicle race team winning ACROSS THE WHOLE COUNTRY races and staying thin on top of there game. look at all the actors too. i am sure they struggle. but still possbile. that is what i am working on. I am going back into sports, contact sport even, boxing. I used too when I was a teen before diabetes. And I will go back and beat the crap out of diabetes!!!

you can do it!!!!!!!

It is really really encouraging that other people are putting this material out their. First off I have to say I admire your courage for speaking about your problem. I was diagnosed with Type 1 at the age of 2 and I had tight control for about 16 year. For the past 4 or 5 years its been rough. I have a history of anorexia, bulimia(through self induced vomitting), and compulsive excercising(5 plus hours a day). I am in recovery now with the support of other and my faith in God. However, my diabetes is still uncontrolled. I am an extremely driven person and a compulsive perfectionist. I struggle to deal with my diabetes because I can't ever perfectly control it. As soon as I make a mistake I baically say screw it. I don't purposefully withhold insulin but I just feel like I ignore my disease. I am a nursing student and only have a little over a year left of school. I am bombarded with people in the hospitals with missing limbs and renal failure. I see their pain and suffering and it's extremely difficult. I feel like I excel academically, at my job and well at pretty much everything in my life...........except diabetes. I am beginning to face reality but I feel overwhelmed. Where the hell do I start?? I have a pump and a CGMS a great doctor. I guess I just need support, or motivation, or advice, whatever I don't even know what the hell I need? I would greatly appreciate any advice. Again I admire your strenghth for speaking about your struggles