Misdiagnosed with Eating Disorders?

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Okrad

Joined
May 10, 2013
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I have posted elsewhere on this and learned it is not that uncommon for some of us to be told we have anorexia or other eating disorders and are misdiagnosed for decades while Drs hammer away at that.

How many of us has this happened to?

I was 14 when I was dxed with anorexia despite terrrible pain and digestive issues and lack of growing (obvious mal-absorption of some nature).

I did not even see a bowel specialist till I was practically 30 years old!

Please post and let me know if this is you because I thought I was the only one and am glad I am not because while it makes me very angry, it gives me hope to hear how others got that removed from their charts or found new drs to overlook that?

I tried to get it off my charts and the Dr snapped, "Eating disorders are chronic. NO."

I fired her immediately, but the notes are still there.
 
I already talked about this on your other thread, so yes, I was diagnosed with anorexia. Teenage girl losing weight - the doctors didn't bother checking for another illness, despite my attempts to tell them I had no body image issues. My parents assumed the doctors were right (I don't blame my parents for that), and at that age my parents made the decisions, so I was put in in-patient psychiatric care.

What complicated the situation was that my weight loss was not due to malabsorption, but due to lack of appetite and the phobia of eating that I developed as a result or realising that food caused me pain and diarrhoea. The doctors didn’t believe me – and even when they realised I had diarrhoea they just accused me of laxative abuse (a common eating disorder behaviour). If I took a long time in the bathroom, they accused me of making myself throw up, or of having obsessive compulsive disorder – an illness which often coexists with anorexia. They even said the massive amounts of toilet paper I was using was due to an OCD obsession with getting myself clean.

The stigma of anorexia among medical professionals – those from other medical backgrounds who I went to see for my various physical conditions as well as psychiatrists – was disgusting. Even if I did have anorexia, I would stay away from any medical treatment. The girls I was in care with were not getting better. They were treated as if their illness was something they could be punished out of.

We used to sit in groups, and every other girl would say how she didn’t want to eat because she didn’t deserve food, she liked the pain of hunger. They often self-harmed to punish themselves. I wasn’t eating because I thought I deserved to be comfortable and free from embarrassing bodily symptoms.

I had to get very very physically sick before anyone would accept I had anything other than mental illness going on. My parents realised long before any doctor would accept it. I tried to make formal complaints about my misdiagnosis and the terrible conditions in the eating disorder unit, but the head of the NHS trusts who I complained to just lied and said their doctors had done no wrong.

Edit: Thinking about this some more, I wonder if this experience influences my approach to food now. Some of you may have noticed that I don't think much of labelling food as "junk food" or of diets that involve avoiding all processed food and sugar. I know giving up junk food is advocated by many members of this forum, and many have found success in adopting healthy, natural diets of one kind or another.

I had assumed my enthusiasm for including plenty of junk in my diet (along with healthy and home-cooked food) was a result of my failed attempts to cure my disease by adopting various alternative diets. I tried giving up processed food, eating only organic, eliminating gluten, dairy, etc. but had no good results at all.

But now I'm wondering if I encourage people to enjoy junk food and not get too hung up on avoiding anything deemed unhealthy is partly due to my experience of being misdiagnosed with anorexia. Even at the time, I didn't want people to see me as the stereotype of someone with anorexia - obsessing over body image was really not something I did much of. I didn't want to get labelled as someone who only ate lettuce and was dieting, trying to get as thin and attractive as possible.

So perhaps that's one reason why I enjoy eating sugar and treats, why I'm happy for people to know I'm not obsessed with what I eat, and why I often post here about the benefits of avoiding overly restrictive diets.
 
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I had this only recently with my 12 yr old son. He was diagnosed with crohns 3 years ago and been on medication ever since.
Six months ago he started a flare up. He was put on a 6 week modulen diet over Christmas and still lost weight. By February he had lost 12kg. I was then approached by his GI doctor telling me they didn't think it was his crohns causing this, they felt he had developed an eating disorder:ymad: They told me because of his age, he would be developing a body image and wanted to look good for others, which was preventing him eating!
To say I was mad was an understatement! I told them in no uncertain terms they were barking up the wrong tree, there is no way on earth my son has a body image problem and that I knew this was related to his crohns.

By March he had lost more weight, despite being on steriods, he had now lost 16kg. Eventually he was admitted to hospital and had to be tube fed. After more tests it was found that his crohns was now in his small bowel and he has ulcers in his ileum, jujunim and stomach lining. No wonder he couldn't eat :yrolleyes: So much for an eating disorder. I did get an apology from the doctors, but I have a feeling this may still be on his records and will come up again at some point.

I still just don't understand how someone who already has a diagnoses of crohns can be thought to have an eating disorder, and would have expected the GI doctors to know better.

We now have the problem the other way of them telling me he is putting on too much weight. You can't win ...........:thumbdown:
 
Hello, un!

That is such a terrible experience and I know what it is like. The abuse in eating disorders centres are common. The blame, the humiliation, the cruel ways to torment a young girl who cannot eat!

I also had that pain which caused me to say, "Well, I cannot eat!"

And everything was laughed at. Once I had heart beating weird and they called in these Drs who were acting like I was lying. When I got out, I went to a real Cardio dr who found MV, PVC and PACs and was supportive!

Stilll though no bowel Dr. They had me so convinced I was an evil teen killing my parents by starving on purpose that I never imagined there was such thing as a real bowl disorder to blame!
 
CDJ- That is UNBELIEVABLE! A child already Dxed and a boy? He obviously had low risk!

I think Drs are now saying, "Hmmmmm. We have no idea. Let's just say mental health." Further, mental health is getting a crap load of funding in the states with the AHA so it will be a booming business even though there is so little science behind it.

I hope your boy is doing better, even if he is a little over the weight they want him to be. They do not know everything, as you can see

After all that, I hope he is doing really great and is a happy youngster! :)
 
Okrad, that is just how I felt. I know my son very well and he has no interest in what he looks like. You only need to see his choice of clothes to understand that:) He really doesn't care what he looks like. But it is so difficult getting it across to so called professionals who think they know better.

Josh is doing so much better now he is on the right meds, he is like a different child. He said to me "I am really happy now, and I can't remember the last time I was " This made me cry as I realised just how bad he had been feeling for such a long time. He has today gone away on a 5 day school trip, something which not that long ago I didn't think he would be able to go on.

Like you say, it is so easy to go down the route of mental health rather than look at the obvious problem.
 
I went roughly 18 years being told I had depression causing weight loss, pain with eating because I was overweight as a child and still carried the stress from being taunted, and abdominal pain from adhesions as a result of prior abdominal surgeries, finally was correctly diagnosed with UC and 2 years later had my colon removed. You are not alone. Many of us were misdiagnosed for years before getting a more correct diagnosis and treatment.
 
Hmm, well, this happened a good while after I'd been diagnosed with Crohn's - five years, in fact - when a doctor looked my mum in the eye and asked her if she felt I had an eating disorder. I was in the room, as well! Needless to say, she got rather offended, since the point we were trying to get across was that I adore food and if I'm not eating, something's wrong. :p
 
Yep! The same. Gastro Consultant asked me in front of my daughter if i had SEEN her being sick!

It really did affect her badly, as I'm sure it's affected everyone who's been treated badly like this!

Really hope some of these doctors get some of their own medicine!!

(((hugs)))
 
This is a definite sore point for me, I'm probably going to rabble on quite a bit here. I started having periods of weight loss at 11. From the age of 14-21 I had multiple courses of treatment for 'generalised anxiety disorder' and I think at some point depression? I mean I must have seen over 10 mental health professionals on a long term basis. And it never ever made me any better.

Around 16 I would frequently have to leave class after lunch because I was in a lot of pain and felt like I might vomit. The nurse therapist I was seeing at the time classed this as avoidant behaviour (not sure what I was supposed to be avoiding) and phoned my school to tell them not to let me out of class if I felt unwell. As there was no real anxiety disorder and this had been misdiagnosed this was extremely distressing for me. I had to fill in diaries of things that made me anxious and when I came back with blank pages the therapist would get really mad at me, eventually I resorted to making it up to avoid the aggression from the mental health nurse. At the same time I was losing so much weight they resorted to weighing me every 2 weeks. Every time my weight was decreasing but no action was ever taken on it, it was always blamed on something like having a period or maybe you've been to the toilet more.

Eventually I was hospitalised for weight loss/malnutrition/extreme pain in 2011 for three weeks. They couldn't find a cause and so my GI resorted to calling the psychiatrist for an evaluation. I agreed because, although I knew the problem wasn't psychological, the more you protest the more it convinces them you're crazy. I'm still annoyed that a GI I really trusted and thought believed and respected me could do this. The psychiatrist sat me down and told me what was wrong with me before I even opened my mouth. A lot of nonsense about repressed memories and told me it would take me years to get better, and the NHS probably wouldn't fund my treatment. Incidentally I never heard from them again.

When I was discharged from hospital the first thing I did was contact a very reputable (and expensive!!) psychologist. I will admit that when I got really sick, I did get very anxious particularly about eating as it caused me so much pain. I would have panic attacks at work when I felt unwell as I thought I was causing it, and found this quite distressing that I could be completely unaware of something that could cause so much pain and suffering. I was evaluated by this wonderful psychologist for 10 months and while she constantly hinted at it throughout the treatment, eventually she said, this problem is not psychological. It is physical. She called my doctor and spoke to him and was kind of the catalyst for getting me on steroid injections. She also wrote to all my doctors to say there was no psychological problem and that any anxiety was secondary to the level of pain I was experiencing. She said if you have a false mental health diagnosis on your records it can cause problems in the future so she wanted to get it on paper that there was NO anxiety disorder/depression. I am still so grateful to her.

The difficulty is that once you have that on your records it's very difficult to shake off, and doctors will have a preconception about you forever. Completely straightforward GP appointments have had be labelled as 'very anxious' in the notes and more recently my GI said my response to steroids was basically all in my head despite my blood results and FCP correlating beautifully with how I was feeling. It is a very sore point for me.

Incidentally when I found out there was actually inflammation in my bowel and there was something physical wrong I calmed down DRAMATICALLY and found I was more able to deal with the physical symptoms and never had a panic attack again!
 
lsgs said:
The difficulty is that once you have that on your records it's very difficult to shake off, and doctors will have a preconception about you forever.
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Absolutely! That was the greatest F-up on my medical records. I finally agreed to see a shrink just so I could get pain meds there in the middle of my 18-year stretch of not being treated. If I hadn't done that, I would also have been written up as a difficult patient and further complicated things. It was a terrible way to live.
 
Yes, this happened to me, and to this day it pisses me off. When I was in 11th grade I started experiencing severe nausea and abdominal pain pretty much constantly. It always seemed to exacerbate right after lunch and every day I would go to the nurse's office. I lost a great deal of weight and our "doctor" told my parents I was faking the stomach issues to avoid eating and had anorexia (even though occasionally I would feel somewhat better and eat voraciously). It was awful, they took me to horrible psychiatrists who made me feel crazy. I would get furious and cry when they would deny my symptoms and when I would refuse to admit I thought I was fat (as I knew I was skinny) they would claim I was resisting treatment. After about a year, my stomach started feeling better, I started gaining weight, and was fine. TO THIS DAY (and I'm now 43 years old), my parents are convinced I had anorexia, even though my doctor EMPHATICALLY calls that my first Crohn's flare. Oh, and I also had a cousin who had severe Crohn's, hospitalized often, and an aunt and grandparent with the disease. You would think they'd have known better, no? Idiots.
 
These stories are just appalling! WHen they talk about "Eating Disorder Awareness" they nede to understand what it is NOT.

I also had the issue of feeling anxiety AFTER being tortured by food, not before. I never felt fat until my stomach really was distending! And I, too, KNEW I was skinny and saw I was starving and hated it! But no, that was being "non-compliant".

There needs to be Awareness all right. Awareness of how the eating disorder industry is making a killing by making young girls think they are mentally ill.

I heard that only 1/3 recover and now I know why. On.y 1/3 recover BECAUSE they are treating a physical problem as if it were mental. Imagine if you did that with lung disorders: 1/3 would die because it would be serious, 1/3 would struggle on because it would be a chronic illness like CF perhaps, and 1/3 would recover because it may have been an irritant.

With eating disorders, I bet 1/3 are serious physical abnormality and being NOT acute, it will slowly kill. The 1/3 that struggles, may be fighting things like UC, or genetic issues, and the 1/3 that recovers may be an infection or something

......and maybe a FEW in that last 1/3 may be psychological, but I saw the suffering and I tell you, most of those girls would have done ANYTHING to get better and many almost did do everything. The discipline and strength to fight was like no other disorder I have ever seen.

Clearly they are letting people who are sick die and die making them think it is their own fault!
 
Furthermore, a Dr is ONLY supposed to dx someone as psychological or somatic AFTER EVERY OTHER possibility has been exhausted.

That was OK back int he 1800s when a total physical was rubbing your head and maybe listen to your heart.

Now we have gene testing, heavy metal testings that most Drs will not do (but VERY MUCH effect mental health) , there are vitamins that make people unbalanced (some people cannot process all the folic acid they put in EVERYTHING now and it can cause dopamine issues in people), there are scientists saying our gut flora can effect our mental health.....

This is not even including all the other tests like heart, colon, brain, and blood tests that are common. Eating disorder girls and boys almost NEVER get any of these other than a thyroid test.

Now "somatic" it is the first line of defense for a Dr. and it is only a matter of time until they get sued for failure to diagnose. After all, most of these tests can be ordered online now, people can test themselves.
 
Wow, these stories are horrid! I was never diagnosed with an eating disorder, but two different doctors told my mom that they thought I had anorexia, as I lost 40 pounds my junior year of college. She knew that I liked to eat, and that if I said I had pain, then there was pain. After a year of being undiagnosed, she yelled at the doctors to force them to get me a colonoscopy. I am so lucky I had her on my side. Of course, her being an OR nurse helped tremendously.

I am sorry to all who have had to gone through that.
 
Wow, that is just awful. You must have been seeing some idiot doctors, are believe me, there are a lot of them out there!

First off, with an eating disorder, there usually is not pain. The person just will not eat. I mean an eating disorder is a true disease, but it is different than a person who is sick and wants to eat, but cannot. I am sorry it took so long for you to see a GI specialist.

As far as getting it off your chart, you can just start over with a new doctor in a new hospital. Don't even bring those records. That or you can file a complaint with the hospital that has this in their notes saying that they mis-diagnosed you, that you NEVER had an eating disorder( you just had a case of idiot doctors that did not know how to do their job and mis-diagnosed you!).

I am so sorry you went through this. I know when I was in High school, I new a girl who was Very thin, I mean super thin. They were always harassing her trying to get her into counseling saying from her weight she definitely had an eating disorder! This girl ate the same amount that I did and even more at times! It was just her make-up. People can be so unbelievably ignorant when it comes to these things. I mean people also never think an overweight person can be malnourished, but they can be. I remember talking to my old gastro doc who moved out of state. I asked him once how would you know if one was malnourished, would it be by their weight? He said no, he said you can be very skinny and be very healthy and yet you can be overweight and be malnourished. It just depends on the bodies ability to absorb nutrients..










Okrad said:
I have posted elsewhere on this and learned it is not that uncommon for some of us to be told we have anorexia or other eating disorders and are misdiagnosed for decades while Drs hammer away at that.

How many of us has this happened to?

I was 14 when I was dxed with anorexia despite terrrible pain and digestive issues and lack of growing (obvious mal-absorption of some nature).

I did not even see a bowel specialist till I was practically 30 years old!

Please post and let me know if this is you because I thought I was the only one and am glad I am not because while it makes me very angry, it gives me hope to hear how others got that removed from their charts or found new drs to overlook that?

I tried to get it off my charts and the Dr snapped, "Eating disorders are chronic. NO."

I fired her immediately, but the notes are still there.
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I think it's amazing that there are medical "professionals" who will ignore what they see and hear and go with what they think. Anorexia and bulimia have very typical presentation, and complaints of pain/diarrhea/bowel issuese are NOT part of that. I actually was bulemic when I was a teen and nobody noticed. That is part of it - not to draw attention to it! So when a kid is trying to tell people he can't eat because of pain or has bowel problems, people need to LISTEN. I have a cousin whose weight flucutated so much when she was a teen everyone assumed she was anorexic. It turns out that she has Lupus, and that and the meds she was on for it were causing the weight problems. I think what we have in this country is a huge attitude of discrimination toward teenagers, and it needs to stop so that when there are legitimate medical issues, they can get the help they need without being made to feel that they are dishonest or untrustworthy.
 
Off track here but thought perhaps you'd be amused.

Had a Pediatric GI tell me that my son's stomach pain & reflux was caused by overfeeding and that perhaps he was just mean't to be a really skinny person so if I fed him less and let him lose weight he'd get better.

He then recommended a diet designed to treat obesity. Liam has a BMI of 13.8, which is below the 3 percentile line for his age.
 
I was diagnosed 4 months after my second child was born. My GP said to me that the diarrhea and 5 stone weight loss was due to me having a baby and wanting to lose the baby weight!!! After weeks of visiting my doctor and crying in pain I was then diagnosed with postnatal depression and put on anti depressants. I had regular visiting from my health visitors checking up on me and making me feel a bad mother. After collapsing at home and being rushed to hospital I was then listened to and was kept in for a week and finally diagnosed.
 
I'm starting to think there are an awful lot of docs out there who don't know what they are doing. How can a good medical professional ignore physical proof? can you think yourself into diarrhea?
Maree- I'm so glad your son has you to protect him from fools like a doctor who would put a low-body-fat patient on an anti-obesity diet. Imagine what could happen if a parent just followed along with what the doctor said. Outrageous!
 
There are sooo many bad doctors out there that it is frightening. My very good friend was having severe allergic reactions a couple years back. She would be covered head to toe in hives and she went into anaphylactic shock a few times as well. Get this, the specialist she went to ( Downtown Chicago at one of the Top hospitals here), told her all her symptoms were from "hysterical woman syndrome"!!!! I swear to God. Honestly I think I would have slapped this jerk doctor! Well, long story short, just last year she had surgery to remove a Huge parasitic cyst from her liver ( hives went away and have not come back since that surgery!). Doctors can be so ignorant. I was told I had Lupus, AIDS, Scleroderma, you name it. I have been mis-diagnosed so many times I have lost faith in doctors for the most part. It is sad really...






mccindy said:
I'm starting to think there are an awful lot of docs out there who don't know what they are doing. How can a good medical professional ignore physical proof? can you think yourself into diarrhea?
Maree- I'm so glad your son has you to protect him from fools like a doctor who would put a low-body-fat patient on an anti-obesity diet. Imagine what could happen if a parent just followed along with what the doctor said. Outrageous!
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Wow. I am taken aback. I guess I have been pretty lucky to be where I am and have the medical access that I do - the majority of the doctors I have seen were at least working in the 21st century. Hysterical woman syndrome? What era does he think he lives in, the early 1900s? I can understand misdiagnosis if there are legitimate reasons for it (similar symptoms and the like) but not blatant disregard for the patient's complaints and physical symptoms.
 
Ihurt said:
As far as getting it off your chart, you can just start over with a new doctor in a new hospital. Don't even bring those records. That or you can file a complaint with the hospital that has this in their notes saying that they mis-diagnosed you, that you NEVER had an eating disorder( you just had a case of idiot doctors that did not know how to do their job and mis-diagnosed you!).
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This isn't always possible unfortunately. In the UK with the NHS at least is isn't. Certain parts of you records are included in any new referral to a new consultant or a new hospital. And you can only change them by going to court (something I don't think anyone would want to be drawn into) because they're a legal document. If there's a part of the notes that's very recent, it can be amended (not deleted and changed, just an additional correction added along side what was written before), but only by the doctor who wrote it originally. Which means getting a doctor to admit he/she was wrong. :yrolleyes:

All my GP was able to do for me was to remove anorexia from my "current conditions" list, which meant it was no longer the first thing seen by a new doctor, but all the copious paper work detailing my incorrect mental health diagnosis - including all the bizarre writing about the psychiatrists' perception of my behaviour and mood - still remains in both my file and my computer file, it's just buried further down now.

I agree with you on everything else though.

I had thought my experience was rare, now I'm seeing perhaps it's really not.
 
This has happened to me when i was 15. I ended up a dangerous 5st in weight after I was wrongly misdiagnosed with being anorexic. It was only march this year I was diagnosed with crohns. When my appetite became very low and started getting cramping pains in my tummy I stated to loose a lot of weight very rapidly. My mum and dad sensed something was wrong and after a two months they took me to see my gp in October, and straight away my gp diagnosed me with anorexia. They then referred me to alder hay to see someone with camhs (child and adolescent mental health service).
By this time i had dropped from 8st to 7st in the space of two month. I didn't speak very much as I was angry because I knew I was not anorexic and no one believes me, but that was put down to a sign of anorexia. After speaking with someone there I was referred to the main camhs team. I went to countless appointments every week to see a woman who kept telling me I was lying when she was accusing me of making myself sick and being anorexic. I was sent for a bloodtest and that showed a little informality with someone who was supposed to be anorexic, but they said it wasn't that unusual. After two months of seeing this woman I started speaking to a therapist. She was much better than the first woman but knew she thought I was anorexic and lying. She always used phrases like "let's explore the idea that if you had IT(a phrase she would call anorexia)".
So anyway it came to the start of February and my weight was still dropping even though I didn't want it to which I kept telling everyone but they wouldn't believe me, and my mum stated keeping my off school because I was too thin. Camhs referred me to cheds another eating disorder clinic but more specialised. By this time I had started to get blood in my stools but was too frightened to say anything and even when my mum saw some blood and questioned me I said I had nothing to do with it, but when she eventually found out she brought it up with the eating disorder clinic who said there was nothing wrong with that. But my mum grew increasingly worried and started to question what was really wrong as that isn't a sign of anorexia. So she phoned up the woman who I saw at camhs and she referred me to see a paediatrician who also deals with eating disorders and that morning I had been vomiting, but when me and my mum brought it up she just passed it aside and sent me for some blood tests and scheduled an appointment for a months time.
A few days later i was rushed to hospital after I went to my gp for weekly pressure and pulse tests and they were very abnormal. I was put on a neurology ward. By this point i was not speaking to my parents at all and wouldn't even look at them as they wouldn't believe me. I told the nurses there that I kept getting bad stomach pains and they already knew about the blood and over the next few days I saw countless doctors and had a ct scan and ultrasound. I finally had a scope and when I woke i had a strange tube up my nose which I thought was just to help me breath when I was asleep but the next morning I was seen by a gastro team who informed me I had crohns which I didn't know what it was but later was informed. I had to be fed through an ng tube for the next 2 months and was in hospital for 5 weeks.
I was put on 25 tablets a day. I am out of hospital now and trying to get back to normal. I have forgiven my parents but can't forget all that happened it the last year and how they didn't spot after all the tests what was really wrong.
 
Pinkmonkey, your story sounds so much like how mine began. It's horrible how impossible it is to get doctors to change their minds about the eating disorder diagnosis. So many times I told them I was not anorexic, and they'd always answer by saying that denial is a classic sign of anorexia. :ymad: I have no idea why so many doctors seem to have this unstoppable, twisted desire to diagnose an illness as psychiatric rather than physical whenever they possibly can.

I think the part that hurts the most though is when parents don't believe us.
 
Uxmas I know. When I was in hospital and was diagnosed with crohns they still wouldn't stop saying I was anorexic when it was very clear I wasn't. And when I was put on a feed through an ng tube I was still loosing weight for some reason so the doctors thought I was making myself sick !! So they told the nurses they had to come to the bathroom with me every time I needed the toilet to check I wasn't doing anything ! But my parents fumed on them and never let them. I was so upset that the doctors still thought I was anorexic and now bulimic ! I just hate the fact that is now going to be on my records forever and I can't change it.
Also when I was in hospital and had been moved to the ward specialised with gastro problems in the bed next to me there was someone who was also misdiagnosed with anorexia and was saw by the same people as me and they had gotten it so wrong again! I don't see why they don't check with every "anorexic" person if there could be anything else wrong and do tests to check every possibility even if it looks like it must be anorexia.
 
You can have anorexia without having anorexia nervosa, people use them to mean the same thing but they don't.

My daughter file says she was anorexic at dx. Anorexia is medical term which means loss of appetite.

Anorexia nervous is an eating disorder.
 
It has happened to us as well. My DH and DS have severe crohns and my brother has UC. It has now been over a year that my DD has been unwell. One of the very first questions to her..."Are you not eating to stay skinny?" She denied doing this and told them "I don't eat because my stomach hurts,not my stomach hurts because I don't eat" We were then asked to leave the room so they could talk some "teenage talk". My DD is 13. When I asked DD what they talked about she told me "you know, a mental health evaluation". She is waaaay too smart....Love her! Funny thing is, when my DS was dx in 2010, I can't even remember a whisper of "eating disorder". You would think, knowing the family history(my son sees the same doc)that this would not be the first question. I guess she "passed" the mental health evaluation, her scopes are set for Aug.16.
 
We had the same question at Sarah's gp appointment for referral. The referral to the GI said she was anorexic.
 
This happened to me in 1975 when I was 13. My gp was so sure I had anorexia nervosa, that she hospitalized me and alternately force fed and starved me and put me on tranquilizers. I continued to waste away and had horrible D. She finally ordered a barium enema and diagnosed Crohn's. But that was after six weeks of hell that very nearly cost me my life.

I'm so sorry this misdiagnosis is still happening. Back in '75, hardly anyone had heard of Crohn's. I'd hoped increased awareness of the disease helped to speed along a correct dx. I too was furious with my doc, as I knew I didn't have AN.

4
 
That sounds terrible twokatmew. Tranquillisers !! Were you in pain? And did you tell them? I don't see why doctors are still getting it so wrong mistaking a physical problem for a mental one after all these years. I thought it was rare but obviously not. I was told I had very serious anorexia nervosa but that was only because I would keep denying that I was anorexic and stopped really speaking to the people in the end because I thought it was so stupid and was so angry.
 
Catherine said:
You can have anorexia without having anorexia nervosa, people use them to mean the same thing but they don't.

My daughter file says she was anorexic at dx. Anorexia is medical term which means loss of appetite.

Anorexia nervous is an eating disorder.
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Yes, I think most people think of "anorexia" as anorexia nervosa, and not the lack of appetite.

My doctors definitely diagnosed and treated me for anorexia nervosa, but ironically anorexia (the lack of appetite kind) is one of the symptoms I actually have.
 
radchic said:
It has happened to us as well. My DH and DS have severe crohns and my brother has UC. It has now been over a year that my DD has been unwell. One of the very first questions to her..."Are you not eating to stay skinny?" She denied doing this and told them "I don't eat because my stomach hurts,not my stomach hurts because I don't eat" We were then asked to leave the room so they could talk some "teenage talk". My DD is 13. When I asked DD what they talked about she told me "you know, a mental health evaluation". She is waaaay too smart....Love her! Funny thing is, when my DS was dx in 2010, I can't even remember a whisper of "eating disorder". You would think, knowing the family history(my son sees the same doc)that this would not be the first question. I guess she "passed" the mental health evaluation, her scopes are set for Aug.16.
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I think they only assume anorexia when the patient is female. Which is also stupid because males can have anorexia nervosa too, so you'd think since they're so determined to find it in women they'd try to find it in men as well.
 
It took my doctor a while to figure it out, He didn't believe me or my mum when I said that I think I might have an eating disorder, only until my weight dropped from a reasonably healthy 8 stone to a really not healthy 5 1/2 stone :eek2:. It took him that long to figure it out I ended up in hospital, while I was in there he came round and said to me "I think you might have an eating disorder" :voodoo: so I said "I have been telling you this whole time, and you wait until now to finally figure it out" After that he said "sorry" I really didn't know what to do or say to him, but I can't believe he would leave it that long surely he would he noticed that I was losing weight each time I went to see him, well obviously not. :ybatty:
 
This should be written up for an eating disorder conference to educate doctors and therapists and spread the word.

I'm really sorry that anyone had to go through this type of experience.
 
Just google scholared and found there were some papers mentioning Crohn's being misdiagnosed as anorexia nervosa. Here's an old onehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2545307/pdf/bmj00275-0045.pdf
 
UnXmas said:
I think they only assume anorexia when the patient is female. Which is also stupid because males can have anorexia nervosa too, so you'd think since they're so determined to find it in women they'd try to find it in men as well.
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That is right for most cases but as I said before when I was in hospital the person in the bed next to me that it happened to was a boy who was also misdiagnosed with anorexia nervosa.
 
My cousin has lupus and was also mistakenly diagnosed with anorexia when she was a teenager. Once they diagnosed her and she started on steroids, she would gain weight adn then lose a lot adn get really skinny. People still made the assumption about her. Now that I've lost weight and am having trouble gaining it back people keep assuming I'm not eating. My hubs knows I'm eating, he's with me all the time. Kinda crazy people don't believe us all the time!
 
O
Pinkmonkey said:
That sounds terrible twokatmew. Tranquillisers !! Were you in pain? And did you tell them? I don't see why doctors are still getting it so wrong mistaking a physical problem for a mental one after all these years. I thought it was rare but obviously not. I was told I had very serious anorexia nervosa but that was only because I would keep denying that I was anorexic and stopped really speaking to the people in the end because I thought it was so stupid and was so angry.
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Yes, terrible pain, and I told the doc so. I even had Erythema Nodosum on my arms and legs. The tranqiilizers made me feel so terrible that I pretended to swallow them and then tossed them in the drawer next to my bed. They finally transferred me by ambulance to Bart's in London, (where they immediately started me on steroid shots and Azathioprine). I wish I could have seen the nurses' faces when they found six weeks worth of pills!

4
 
Yes. My oldest daughter labeled as anorexic when 15 and placed on antidepressants. Cheer coach blackballed her at tryouts.Went on for 1 yr until I fired internist and diagnosed by GI with Crohns.
 
I think it's ok for doctors to ask about eating disorders in patients with weight loss. I think they have a responsibility to consider that option, especially since eating disorders are very common (especially in certain demographics - young, female, etc.). I had one doctor fairly recently who put it very politely - he began by apologising for having to ask a personal question, and then explained that since he didn't know me very well, he was obliged to ask if my weight loss was deliberate. He then asked if I ever made myself sick. I answered no to both those questions, and we moved on. Given what I'd experienced from so many doctors in the past, I was so impressed by how he handled this situation! He was the same doctor who, when he couldn't figure out what was wrong with me, admitted he didn't know what was wrong and said he was referring me to someone more specialised. He was a really good doctor.

It's when doctors refuse to believe patients' answers to questions about eating disorders that they begin to cross the line. And when a patient complains of stomach pain, diarrhoea, and a host of other digestive problems, it does seem pretty ridiculous when a doctor decides that an eating disorder is their first suspected diagnosis.
 
I remember being in the throws of serious weight loss and being asked by my GI 'are you sure you're not losing weight for your wedding?' I've never been so angry as when he said that.

Also in hospital I was immediately typecast because 'young, female professionals' tend to have psychological problems. I think this is the moment that my relationship with my gastro became strained as I didn't trust him anymore. I just fired him last week.

I agree with unxmas that they need to move on when it's been established no psychological problems exist. I was evaluated extensively by a psychologist who found no problems and wrote to all my doctors and I still had to battle with my GI that things weren't psychological. Frustrating.

I don't get what part of making a misdiagnosis is okay if it's psychological. Why is it ok to misdiagnose a psychological problem yet they're so hesitant to diagnose physical problems in case they're wrong. I guess they view psychological problems and treatment 'as harmless' to get wrong when it can actually be very damaging.
 
It happens to men too. I went from close to 200lbs to under 150 when in high school. parents thought i had an eating disorder. thankfully i had a cousin with Crohns that convinced them it could be something else. Had it not been for both of us, arguing that i didnt want to loose weight this way, and loved food too much for it to be an eating disorder. they did reluctantly take me to a GI, who did ask about eating disorder, but quickly went away from it, once i told him my problems. I think eating disorders are an easy out for some, as the end results can be very similar.
 
I would agree with UnXmas, that it's okay for docs to consider it and ask about it, but it's when they disregard what the patient is telling them about symptoms that the disconnect begins.
 
Wow. I thought I was nuts, but it looks like I'm not, based on what I'm reading here. Seems like a lot of doctors are overzealous on the ED diagnosis. No wonder I've been hesitant to mention to my doctor that until about 2 years ago, I used to binge and purge multiple times a day.

My last blood test was a little off. Slightly low total protein, a drop in albumin (still within normal range), and glucose that is somehow much higher fasting than after meals. Since my liver, pancreas and kidneys looked clean on a recent CT, they probably aren't to blame ... which means the only things I can find that can cause a drop in albumin, low total protein, and glucose irregularities are malnutrition or malabsorption.

I didn't even realize until a few days ago that I hadn't told my GI I'm a former bulimic ... but now, I'm hesitant to mention it for fear of being dismissed as having moved from one eating disorder to another. This simply isn't true. But if you're trying to do a differential dx between not absorbing nutrients and not eating them, learning a patient used to be bulimic is probably going to color your perspective.

(By the way, I'm not diagnosed, but having rectal bleeding, weight loss, fatigue, mucus in stool, blah blah, so my GI is still trying to figure out what's wrong with me.)
 
BureaucraticNightmare said:
Wow. I thought I was nuts, but it looks like I'm not, based on what I'm reading here. Seems like a lot of doctors are overzealous on the ED diagnosis. No wonder I've been hesitant to mention to my doctor that until about 2 years ago, I used to binge and purge multiple times a day.

My last blood test was a little off. Slightly low total protein, a drop in albumin (still within normal range), and glucose that is somehow much higher fasting than after meals. Since my liver, pancreas and kidneys looked clean on a recent CT, they probably aren't to blame ... which means the only things I can find that can cause a drop in albumin, low total protein, and glucose irregularities are malnutrition or malabsorption.

I didn't even realize until a few days ago that I hadn't told my GI I'm a former bulimic ... but now, I'm hesitant to mention it for fear of being dismissed as having moved from one eating disorder to another. This simply isn't true. But if you're trying to do a differential dx between not absorbing nutrients and not eating them, learning a patient used to be bulimic is probably going to color your perspective.

(By the way, I'm not diagnosed, but having rectal bleeding, weight loss, fatigue, mucus in stool, blah blah, so my GI is still trying to figure out what's wrong with me.)
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I know this goes against what I'm probably "supposed" to say, but if I were you I would not risk telling your GI about the bulimia, especially as it's not current, unless you know your GI very well and are confident that he knows you have a physical health problem. At the very least, if you do feel he should know about it, you would probably do better to wait until you have a firm diagnosis so that your physical problems can not all be dismissed as psychiatric.
 
CDJ said:
I had this only recently with my 12 yr old son. He was diagnosed with crohns 3 years ago and been on medication ever since.
Six months ago he started a flare up. He was put on a 6 week modulen diet over Christmas and still lost weight. By February he had lost 12kg. I was then approached by his GI doctor telling me they didn't think it was his crohns causing this, they felt he had developed an eating disorder:ymad: They told me because of his age, he would be developing a body image and wanted to look good for others, which was preventing him eating!
To say I was mad was an understatement! I told them in no uncertain terms they were barking up the wrong tree, there is no way on earth my son has a body image problem and that I knew this was related to his crohns.

By March he had lost more weight, despite being on steriods, he had now lost 16kg. Eventually he was admitted to hospital and had to be tube fed. After more tests it was found that his crohns was now in his small bowel and he has ulcers in his ileum, jujunim and stomach lining. No wonder he couldn't eat :yrolleyes: So much for an eating disorder. I did get an apology from the doctors, but I have a feeling this may still be on his records and will come up again at some point.

I still just don't understand how someone who already has a diagnoses of crohns can be thought to have an eating disorder, and would have expected the GI doctors to know better.

We now have the problem the other way of them telling me he is putting on too much weight. You can't win ...........:thumbdown:
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This is terrible! I am a therapist with DMESupplygroup and I can't imagine this. When doctor's get in a rush though they will look at the most logical explanation and leave the room such a shame.
 
UnXmas said:
I know this goes against what I'm probably "supposed" to say, but if I were you I would not risk telling your GI about the bulimia, especially as it's not current, unless you know your GI very well and are confident that he knows you have a physical health problem. At the very least, if you do feel he should know about it, you would probably do better to wait until you have a firm diagnosis so that your physical problems can not all be dismissed as psychiatric.
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I think you're right.

There's actually a great (not to mention short and sweet) opinion piece on a similar subject from Sunday's NYT. The author, who has bipolar disorder, examines the discrimination patients with mental illness commonly face when they seek treatment for a physical problem. http://www.nytimes.com/2013/08/11/opinion/sunday/when-doctors-discriminate.html?pagewanted=all&_r=0

As someone who can't give a list of prescriptions without any decent doctor immediately knowing I have bipolar disorder, I've had firsthand experience with how psychiatric context can color physicians' perspective. I have no doubt my mental health statuse has affected my treatment for physical problems -- so I definitely understand why folks without eating disorders are especially concerned when a doctor misdiagnoses an ED. Medical pros aren't immune when it comes to discrimination, and an ED (or any other psychiatric issue) -- correctly DX'd or not -- can be a real scarlet letter in your medical history.
 

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