Magdalena is from Windsor, Ontario (Originally Poland). She has Food-Dependent / GIP-Dependent Cushing’s Syndrome. This means that genetically, she has cells on her adrenals that are only supposed to be in her intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So when she eats, the hormone triggers her adrenal glands and they produce cortisol. It is an ectopic response that is ACTH-independent.
A Golden Oldie last updated 01/22/2008.
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Hi, I am 22 years old now, at diagnsis. I have a rare form of cushing’s syndrome called food-dependant cushing’s syndrome. Sometimes it is referred to as gip-dependant cushing’s syndrome. This means that genetically, I have cells on my adrenals that are only supposed to be in my intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So I eat, the hormone triggers my adrenal glands and they produce cortisol. It is an ectopic response that is acth-independant.
I am writing this bio because it was very hard to find this disease, and it was like nothing else, even normal cushing’s fit rather loosely.
I began having problems at age 12, but the disease did not “blow up” till I was 19. When i was 12, I started having stomach pains. First, the doctors said it was apendicitis, then my period, then lactose intolerance. This was on and off, and I kept eliminating foods that I thought i might be allergic too.
When I was 15, the problem intensified. I lost my period and my stomach aches grew worse; I noticed that my stomach was quite swollen after a normal meal, and everyone elses was not. I assumed that it was my fault and I should eat healthier.
Unfortunately, the stomache aches grew worse till my stomach swelled even below my breastbone and I could barely breathe. I started eating very little and very thought out proportions of food, often feeling that I was doing this to myself and then feeling that this couldn’t be normal.
At 17, I started getting really annoyed that my face was so swollen all the time and my skin so bad; I thought i was just ugly. I was quite thin at 5’5″ and 105lbs, but with a very swollen face and stomache. This was getting out of control, the pain was worse, and I was getting thinner. My yelled at me in class because I wasn’t jumping high enough and I told her it hurt cuz of my stomach, she told me I was too thin and that I probably had an eating disorder.
I was in so much pain, I would have gone to a doctor for a monkey growing out of my head. I went to the eating disorder doctor, I told her my stomach hurt. She told me I had an eating disorder (no kidding.) I was put into a group where they would feed me. Over the next two years, I was put on many antidepressants, fed weight gainers, but the pain grew worse and I grew thinner.
Eventually, they put me in the hospital where the problem grew much worse. I couldn’t even lay down because the food would come back up to my throat and I started having a problem with constipation. Nausea became a problem; thank God I only threw up once in my life, when I was five and I had the flu. I have never had a high temperature since, or thrown up since. This should have been a sign that something was wrong with my immune system, but no one listened. For some reason, my cholesterol was very high and I had a fatty liver. Needless to say, there was no improvement and I signed myself out after 6 weeks.
I knew there was something wrong. I was 19 and the pain was worse. I left my eating disorder doctor with the same complaint that I had come with. So she said that I had IBS. I knew that couldn’t be it, because it never went away, it only got worse, and it had nothing to do with stress or the type of food I ate. To the day of my diagnosis, I thought IBS was a bullshit diagnosis- we don’t know what’s wrong yet…
At 19 something odd happened, i started gaining weight very fast and my ankles and knees started hurting. I was pushing through the pain to eat because life was hard, but I started gaining weight too fast. I went off to a musical theatre conservatory in Feb 04 and disaster struck. I blew up like a balloon, my face looked awful and my stomach would hurt to the point I would become paralyzed. It hurt to breath and I could barely walk upright sometimes. I came home and we went through the diagnosises; pancreatitis, ibs, psychosis, eating disorder, lupus, diabetes, thyroid and celiac disease.
It looked like celiac disease so I eliminated bread, but little changed. It was winter and I could barely shower and comb my hair because I had so little energy. The weight would come on so fast that my skin hurt to touch, and my eyes were swollen shut. I also thought i was psycho, but a little voice said I couldn’t be.
The next october the same cycle occurred, really quick weight gain, fatigue, sweats, and blurry vision. Independant university study was hard, but I got through it. That May and everything started going down, I could exercise again. However, the fatigue, nausea, stomach pain and occasional flareups were a rollercoaster. I know now that these are signs of adrenal insufficiency because my acth was still suppressed. The flareups made me feel crazy, that i was doing this to myself by eating.
The third time this cycle happened was much more painful. It was sept. 06 and I was going to university again. The bachelor of design was tough and I had to focus so much on staying healthy. Going to the gym everyday to sweat so that my swelling would go down. Watching what I ate, doing an IBS diet. I realized I couldn’t digest fruit or vegetables. I kept going to endocrinologist because I had no period and my dhea was high (which worried my gynecologist), but they all said it was nothing. My stomach aches occurred after eating, and even drinking water. The doctor at my school told me that I should know how to stop eating and drinking (He was a really fat, sweaty guy too). I had constipation for 10 days straight and laxatives barely worked. I had such swollen lymph nodes that I tasted raw blood in my throat and could barely swallow. Needless to say, I came home.
I ended up in the hospital at Christmas. The ER doctor and gastroenterologist both said there must be a endo problem because I had been constipated for 10 days, colonoscopy laxatives weren;t working, and my intestines and bladder was so full they couldn’t see on the Ct scan.
I finally went to an endocrinologist in Toronto, Dr. Rosario Briones-Urbina. I suggested Cushing’s, she said I was too skinny. Though I had just gone from 110lbs to 130lbs in two weeks. She agreed to test me in Jan. The test came out 550 out of a max of 250. She waited three months to do the dexamethasone and it was too late, it was march and my cortisol had gone to 90 (the min. was 60). She said she had never seen such a quick cycle.
I wanted to show her just how fast the cycle was; I took a UFC one day that came out 90, the next day I had a party, ate just like everyone else, but got a paralyzing stomach ache and sweats. I did a UFC the next day and it came out 350 (max 250). She was shocked. She said my symptoms fit an extremely rare form called food-dependant cushing’s. Unfortunately, the testing is not standard and I am waiting for it. After it is done, I will have a bilateral adrenalectomy.
If you got this far in my story, thank you for baring with me. I haven’t found a story like mine and wanted to share it, cuz I spent so much time looking. Over two years, I saw 24 specialists. I don;t know how I got through it, I must of been quite a witch with a B. However, I kept pushing. I studied at home independantly to keep me going and have now been accepted to medical school.
The most important advice i have to give is this:
- GO TO A TEACHING/RESEARCH HOSPITAL!!!
- If you have kids, think twice before eating disorder treatment. I went into the program with pain and a method of coping. I came out with an eating disorder psyche, bad experiences, and a truckload of pills that were making me crazy.
- IF YOU THINK YOU HAVE FOOD DEPENDANT CUSHINGS, HERE IS HOW I COPE;
- the cortisol goes up with too much of any protein, fat or carbs. I eat small turkey/cheese sandwiches at every meal (enough to be full, but well balanced).
- I use stevia instead of sugar because its natural (health food isle.)
- alcohol really hurts now, so only a little wine occassionally.
- lots of yogurts.
- every couple days a mixture of senna laxative and stool softener (not too often)
- Remember the squeekiest wheel gets the grease.
What do you do for self care? Please tell me in the comments.
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