I have thought about this for a while and I'm still not sure if I'm going to be able to explain myself clearly.

 I feel like I was totally blindsided by the psychological aspects of my D's eating disorder. She fell really fast, in just  a couple of weeks my D vanished and this stranger took over. For a while I believed the experts that my D had suddenly, without trauma, become very anxious, oddly obsessed, violent and abusive, suicidally depressed and she couldn't eat as a side effect. Hating herself and everyone around her. Rapidly she decided it was all my fault and as much as I tried I couldn't see what she said had any basis in reality. In therapy she just kept saying I wasn't listening to her. I was listening but I now see she wasn't really talking.

I wasn't the only one who got sidetracked by the psychological affects, no expert recognised my emaciated, bald, hating D was staving herself due to AN. We all saw the anorexia, but I was told it was not AN.

So, I guess my question is how is it the experts missed it and I never knew that starvation could cause such wild behaviours? Everyone talks about the weight loss, the obsession with thinness (D didn't say anything of this till many months into the AN.) but I simply never knew how literally out of their minds some sufferers get. Was anyone else as naive about this as I was?

I'm dragging her up the sand hill now. and as we near the top ED is coming on with a vengeance and I am reminded of the venom this illness can spew. I just want it gone and I find myself stunned all over again by the power of the disorder. I hate this disease.

Mamame,

Forgive me for not posting you the link as I am in a hurry.

Go to the FEAST_ED site and look up the Minnesota Starvation Study. It will blow your mind to read about the psychological effects of starvation on healthy people who didn't have EDs. It is textbook case what all of our children with EDs go through. If more Drs read this study thoroughly they will recognize this as the ravages of starvation in their young patients and treat it as such!

I am so with you on this!  Perhaps even more befuddling for me is the fact that my d was never "starved", actually had gained weight with bulimia.  Yet she was beyond extreme in her behaviors.  I have no time to really write... just had to throw my quick 2cents worth of agreement in.  Will try to revisit later.

You are awesome!!

Mamame - we were blindsided too.  Your post got me to thinking and this is what I've come up with.

The "rip off the band aid" analogy is often used here to describe the actions we need to take with our ED children.  I'm going to use it to describe what was happening to our d.  When a wound is covered by a band aid you might not notice how bad the wound is.  It could be oozing ugly, green pus and you would not necessarily know it.  It could be horribly infected and you wouldn't necessarily know it.  When we ripped off the band aid we found an ugly, festering, infected wound underneath.  My d keeps telling us she was fine until we decided she had an ed.  Not true.  It was just festering under the band aid.  Little did we know how infected the wound had become.  The second that band aid came off healing began.

Thank you Maria, I read the study after I came to the forum. It seems to make it very clear that the psychological effects follow the starvation. As I read other peoples stories I learnt of the devastating physiological effects of ED's. I just had no idea.

Am I right in saying starvation of the brain that brings on ED in susceptible individuals is not the same as weight loss? Jenn's case and probably many cases of BN would seem to indicate this.

"Was anyone else as naive about this as I was?"

Boy Mamame,

We sure belong on that list. But I think this arises in 2 ways.

First, we see clear psychological disturbance. Our kids seem divorced from reality. We think that disconnect is why they can't stop these self destructive behaviors. Then we go to the "experts" for help. And so many of them out there, have been trained to believe that too. It becomes self perpetuating. The "experts" confirm our own impressions, so they seem credible...and things snowball from there.

This is still a huge problem for sufferers and families. It's why there's such an emphasis on patients' having to find the inner resolve to choose away from their behaviors and thinking. It's why so many patients and families find themselves in what I call "treatment purgatory". The need for ongoing Rx begins to equate to a failure on the part of families and sufferers.

When a psychological illness is deemed the cause, now endless effort is directed toward the notion of family disturbance or other traumatic contributing factors.
Yes, of course families aren't perfect, and who has grown up never having met hard even painful situations? But when treatment providers approach eds with this framework in hand, it eliminates alternative theories of the origins of this disease.

And I'm sad to say, there's a lot of money tied up in the construct too. [I'm channeling "The Matrix" here, bear with me]. Huge programs and treatment centers have sprung up around this. Medical and other professional training programs have had this one theory to work with for over a century. It is only recently, that schizophrenia has been understood as a biochemical disorder. Epilepsy was considered a sign of demon possession for a long time.

Maudsley/FBT is the new kid on the block. Data keeps building, and science keeps advancing. Institutions are opening their staff positions to folks like Dr.Kaye, who are willing to explore new lines of investigation.

Change is hard, there are a lot of vested interests in the treatment world. But in my heart, I believe caring parents, coupled with courageous leaders in neurobiology, who are willing to swim against the tide... will bring the change all sufferers deserve.

We're on that list too. Our pediatrician said it couldn't be AN because she didn't have body image problems - that came later.  We were told it was dieting gone bad.  Yeah, really bad!

ruralmom; did the Ped have no sense of irony?

"It can't be an eating disorder, it's just really disordered eating."
"He's not starving, he just isn't eating enough."
"I'm not saying she's restricting , I'm just saying she has cut all of the major food groups out of her diet."

SHEEESH!

Mamame, we were actually told by an inpatient ED specialist that she "didn't really deal with the psychological aspects at all." You could have flown a 747 into my mouth when she said that. But you should've seen her face when I asked her "How is that possible? Didn't they cover the functions of the brain where YOU went to medical school?"

I know, it wasn't nice at all, and I did apologize for being needlessly argumentative. Unfortunately, frank incompetance, ignorance, and insensitivity (really, who the heck makes such a dismissive statement to the parents of a child who has starved herself into a pediatric Cardiac ICU?) hit me where I'm most vulnerable. Work in progress....

I'm going to try to be charitable here, maybe if you don't live with the daily fallout of ED you just can't get it. We as parents see the full agony and fallout, they are with us and just can't hide it from us. My D puts on a different face with her Dr's, I know she hides things from them and misleads them. I think they think I am making things up.

I once sat in a room and listened to D lie and downplay her condition with Dr's, I put my elbows on my knees and head in my hands in desperation, the Dr then fixed me in the eye and told me I should get some help. Arr.....
They see us at our worst and they think we have a problem other than the one they are not really seeing sitting in front of them!

Lydia, two of the most reassuring conversations I have had during this time have been with two older mothers. One has a child with schizophrenia and she was told it was her mothering that caused it. The other has a child with severe autism, and yes, she was told it was caused by her mothering. As you say both disorders are now better understood and parents are no longer deemed the problem. 

     When my daughter first became ill, I had no idea that her personality and behaviors would change so drastically.  I think it is absolutely crucial that parents know to expect this is highly, highly probably and a central part of the illness.  This advanced knowledge will 'arm' them to weather the often Category 5 hurricane force winds.  There was damage done to us by our not knowing. 

First, it is easy to overreact and blame the child rather than the illness--to get caught up in the 'wave'.  No wonder parental  'expressed emotion' can be so high when you don't understand the extreme out-of-character behaviors you're seeing! 

Second, it is terrifically frightening if you don't know to expect it or how to deal with it. 

Third, it is easy to fall into the 'parent guilt' trap and begin to believe that heavy duty counseling is the first priority-- which is a disservice if it takes the focus off of full nutrition. 

Fourth, it is easy for parents to give up on their own abilities to take control and turn things over to others when maybe, just maybe, riding out the storm with support and understanding would work. 

This is part of the illness, hard as it is.  Every parent should know this up front.

I think I was naive---or perhaps completely clueless---in other ways.  This all started during a period where I was not seeing our daughter regularly so I think the physical deterioration was more apparent to me than it might have been if I had seen her daily.  I also had a lot of guilt then [both from interfering with her having a closer relationship with her dad before and for being unavailable in her life then] so it made perfect sense to me that she might be doing this to express feelings she couldn't in other ways.

Even now I'm not completely sure exactly what happened.  I think some of what was happening this summer really was PTSD.  It may have all been that, although the child psychiatrist thought there was some interplay with her physical health problems.  Her pediatrician has never used anorexia nervosa as a diagnosis because she has never thought it fit.  She entertained food avoidance emotional disorder but the child psychiatrist thought it wasn't that because he felt all of her aversions and restrictive patterns could be explained as consequences of the underlying medical problems.  Her pediatrician did agree with that so then they were back at maybe this isn't an eating disorder at all. In their defense, her pediatrician did work on correcting the underlying causative medical issues, sent her back to the gastroenterologist because of the fat malabsorption, and started trying to intervene nutritionally while the is it an eating disorder semantic discussion was going on.  I think by some time this fall most of her clinical team was pretty convinced this was not an eating disorder.  They were also encouraged by the progress she or they were making and I was not.

Eventually we did get onto the same page, I accepted that maybe residential wasn't the best option for her, and I now think we're quite fortunate to have the pediatrician we do.  I also have a better understanding of the biological basis of eating disorders and what they are and aren't. 

I was SHOCKED by the ignorance in the med profession. We have military health insurance, and truly, the "nutrition technician" will be having a complaint filed w/ the ombudsperson by me as soon as I can catch my breath. She told my D, who was emaciated at 72% of ideal body weight, that she could go on exercising if she just ate 1200 cals a day. We spent over an hour going over the food groups. Clueless.

Then, the Ph.D. psychotherapist whom I called for support, and who had zilch success w/ my daughter in therapy, said, "Oh, I've heard of that approach -- not overwhelming the adolescent with too many calories." Thank God I found ATDT and kept raising a stink -- finally to find a saint of a Nurse Practitioner who got us referred to Children's Denver. She "got" it -- my D said, "finally, one of these medical people believes me that I'm not trying to do this to myself."

Not only are our kids starving, but that happens at a time if in adolescent when their brains are going through changes akin to the toddler stage (great book -- "The Primal Teen" -- explains this).

Hang in there!!!!! Get support for you, too. I know how wraught I was on Wed when D was supposed to be w/ mom selling GScout cookies, that got cancelled, she was upset and all the rage came out while we were walking...I just let her walk, and prayed for her a few steps back. Then Thursday was great. It's a long process of restoration, mentally, physically, spiritually for these kids.

Good luck.

I asked earlier in the thread if starvation of the brain and weight loss are the not necessarily the same thing. I would love a knowledgeable answer to this, anyone???

Are BN and AN really one with different physical symptoms?

And why don't Dr's get that nutrition is so important?

( Yes, I had a roller coaster of a day. Lunch was difficult, shopping for new jeans with D when well, no issue over sizes and we even talked and she liked some of the things I showed her, then home for snack and meltdown. bonus, I have also walked a few steps away from D and prayed for peace for her and strength for me. One day at a time...)

I agree with all of you. When my daughter was 80 lbs @ 5'10" I used to pray, "just give me my daughter back". But now as she is over 200 lbs and binge eating, it is still not my daughter. I don't know who or where my real daughter is. I fear I will never meet her again.

firefly,

From your registration, I see you're in Chicago. Do you have a treatment team?

I wasn't blindsided. I watched all along... as she lost weight all summer, but ate her favorite foods... I was happy for her that she looked great, and still ate. Her hormones must have settled. And then school started and she was noticed for the weight loss. Big red flag when brother discovered she looked up "songs about anorexia" on the internet. I had a FIT! She promised it was just a joke. She got lectures, and I watched. She lost more weight... she started thinking more and more about food and choosing different choices for dinner. I complied, but I made sure she ate. By February of the next year, she was having mostly salads on vacation. We all discussed this with her. She was stoney faced, but not malnourished. I lost her when track started. She was not eating breakfast or lunch (but lied that she was eating a protein bar), and then running track for 1 1/2 hours after school. She was caught by older sister GIVING  advice about how to be anorexic on Yahoo answers... I brought her in to the doctor and could NOT hold back my tears.
I watched it all along. She had been to the doctor 3 times in that last 6 months and all they did was lecture her (they had no idea what to do.) If only they had told me about ATDT. The first two therapists were so far off, and I wasted precious time. Meanwhile d reached her lowest weight, and a solid year of obsessive restricting had been gone. And I KNEW it... and I WATCHED it happen. You might feel foolish for not having seen it... imagine how I feel... knowing it was happening and thinking I was stopping it from happening... and I didn't help at all. Like running in quicksand, every step got me and her sinking in deeper.
I am sorry to be so dark tonight. We have reached a very low point. My d had badgered me to the point where I told her to stop or she would be grounded and grounded she was. She missed a good friend's sleepover, and I had to stick to my punishment. I told her if she wanted her life back, she needed to start to want to get rid of ED. I told her he was ruining her life. This was AFTER she was miserable for hours, and then some grades came over internet and she is literally failing two classes... b/c her head is up her ED and she is too worried about what she looks like to her friends  and not at all remembering ANYTHING. Funny she remembers every detail regarding her favorite shows, etc. Now this is more about her gathering her strength and wanting to be normal, than it is about anything else. I suppose it is the step down that had to happen before she stepped up...others have told me this was going to happen. I am way overstressed lately and I really need her to get better.
Living in the Detroit area is really dismal and distressing lately. It seems like our financial world is crumbling and no one is buying any homes unless they are foreclosures, and there are so many. Businesses are closing all around us. So many people are jobless, and everyone with a job is in fear that they will lose it. And it has been such a cold, miserable snowy winter on top of it all. Just a little sunshine would help.
Okay, I am done with my pity party. If anyone wants to feel sorry for me, I would appreciate it so I can have closure.
I know that things will get better, I really do. But sometimes living in the moment is necessary. I can't always ride the high road, sometimes I just need to cry.

I feel sorry for you, pennysgirl!  You're having a rough time.  The economic situation is so disheartening, isn't it?  Can I wax political a moment, and say that I really wish the people on Wall Street would start helping out the folks on Main Street? 

I know that failing grades are disheartening as well, but they're not the end of the world, as you know (even if the school tries to convince you otherwise).  Bravo to you for standing your ground tonight with your daughter.

I do feel good that I stood my ground. It really helped that our great T also supported me 100%. It made the world of a difference. When my awesome Mom was alive, I got that kind of support. I know this lesson tonight with my d will help move her toward phase 2. She is ready for it, but needed a push. I got scared, though, remembering parents who said they returned control too soon. Our t assured me that she is ready and I needed to support that fact to her to give her confidence. She did bring her own lunch once this week. She claims her smoothie was "yucky" and the bottom was too frozen to eat, but she ate most of it. She was told to tell me what she missed eating if she didn't eat all, and she did tell me, so I was glad of that, and she did eat the wrap I made, and that I hope was the truth. Next week she will bring her own lunch two times. I told her she needs to be able to make and eat her own snack... and no sleepovers till she can partake in snacking at least a little. It is disordered to be somewhere everyone is eating and not partake. I hate it that I am pushing, but I feel I must make her uncomfortable so that there is a carrot to be earned.

Mamame,

We were totally fooled as well.  We notices some weight loss, but the &^%$ pediatrician said there was nothing wrong.  We knew something was not right, but she told us she didn't think she was fat, and that was the one thing we thought all anorexics had in common.  We were wrong. 

The good news is that once we understood what was going on, we could put together a plan and get her well again.  We also began to understand the rapid change in her personality. 

Listen for snippets of your real daughter as she gets well.  She is in there and once you see those glimmers, you will know you are on the way.

[QUOTE]I asked earlier in the thread if starvation of the brain and weight loss are the not necessarily the same thing. I would love a knowledgeable answer to this, anyone???

Are BN and AN really one with different physical symptoms?

And why don't Dr's get that nutrition is so important?[/QUOTE]
Mamame;
You posed very interesting questions. I am not a neurologist, neuroscientist, or ED clinician. I am a clinical researcher with >15yr experience (in the process of a loooong interrupted PhD) who has perforce given herself a crash course in EDs. My undergrad background was Anth/Psych with heavy focus on the biological bases of human behavior, and I had intended back then to become an adolescent psychologist (who knew! the irony, it burns!). With that in mind; here is my shot at answering very complicated - and GREAT! questions.

1) I would say that any time you are running consistent macro nutrient (ie carbs, fats, protiens) or micro-nutrient (specific vitamins and minerals) deficiencies for extended periods of time, you run the risk of organ malfunction - including the brain. Your brain is "calorically expensive"; it takes a lot of carbs, evenly spread through the day to work properly, and lots of fats to maintain it's physical integrity. Additionally, the brain is a very complex electro-chemical processor. It needs appropriate balances of vitamins minerals to run properly. So any kind of malnutrition is bound to begin to affect the brain's functions. HOWEVER, malnutrition may or may not result in weight loss! Someone who is w/r but getting insufficient protein or fats will be adversely affecting many organs including the brain. Also, there is huge variability across people in how much malnutrition will have how severe effects. This is one of the reasons why BMI is such a poor indicator. The last complicating factor I'll mention is that, as with many diseases, if you've suffered from malnutrition once, you're more prone to it's effects if it recurs, so that someone whose had AN but is w/r will often start having AN symptoms with even very minor recurrence of incidental restriction like from a stomach flu or a busy day where a meal or two gets skipped.

2) The answers in the literature to this are Yes, No, Sometimes, and We Don't Know! Emerging studies seem to indicate that people who primarily develop AN versus BN are different from each other in ways that can be measured. However, this picture is muddied somewhat by the fact that it is known that about 50% of AN patients will develop BN symptoms. Another confounder is that some of the deficits and co-morbidities are the same between the two groups, although there are clearly tendencies that show up more often with one diagnosis or the other (eg, BN associated more with risk taking behaviors, AN associated more with perfectionist behaviors). IMHO the biggest caveat; Diagnosing physical pathology based on human behavior is rotten business, because human behavior is really complex. Our genetic heritage is our genotype. How genetics are outwardly expressed by an individual is called the phenotype. If you know someone's blood type - their blood phenotype, you can make some educated predictions about their genotype. No matter what has happened to a person, it won't change their blood type. But human behavior is HUGELY influenced by our experiences so trying to go from a person's phenotype to their genotype is really NOT something we can do at this point, and my best guess is that no matter how good we get a the genetics bit, you'll never be able to perfectly predict the genes from the behavior, OR the behavior from the genes.

3). Simple; MOST doctors are not taught about nutrition. I can say this with some inside authority - for 10yrs 1/2 of my job was coordinating the education of 2nd year medical students at a major teaching hospital. The entire nutrition component of four years of medical school for our students was about 3hr of instruction that focused mostly on adult hospital inpatients. And our curriculum, believe it or not, was one of the MOST comprehensive around. Unless the Dr. in question has sought out an elective rotation with more nutritional focus (at this hospital, that might not be until after med school, if at all), they have not received any comprehensive or applied education on the effects of nutrition on the body, beyond what is taught in basic physiology classes. Pediatricians certainly get nutritional information, but to my knowledge, it is more about physical effects on growth. We are only just starting to integrate behavior with underlying physical pathology in the brain, and therefore making the leap from nutrition = physical brain status, physical brain status = observed behavior is NOT something most doctors in the US have been trained to do.

IrishUp, where have you been all my life?
I think you are in the right profession, I understood all you said and you filled in the gaps in my theories and understanding of this ED mess. 
I thank you for your time and effort, GREAT ! I'm rooting for you to finish your PhD and use it to help us understand and prevent ED's.

Two things concern me:
1. "if you've suffered from malnutrition once, you're more prone to it's effects if it recurs"  I guess this means someone with an ED always, for the rest of their lives, has to be vigilant in maintaining regular adequate nutrition.

2. Why, oh why isn't the ever important fuel a body runs on and how it affects the body a much more important subject for Dr's educations?
(I once had a gastroentroligist tell me my diet did not affect my digestive system, I never went back.) This really needs to change.

What a neat explanation Irish-up. I think people with EDs are genetically susceptible to disruptions to their nutrition. Dieting, 'healthy eating', over-eating, over-exercising, losing weight from illness etc are things almost everyone does at some times in their lives - but if you are unlucky enough to be susceptible to EDs these behaviours seem to effect your brain chemistry differently and can lead to severe illness.

Mamame - I think if someone has suffered from an ED they will always be susceptible to the effects of malnutrition. However, what I hope for my daughter is that eating regular balanced meals and snacks and enjoying exercise in a fun way will just become so much part of her life that she barely gives it a thought. And as she says, isn't this what everybody should be doing anyway!

Brilliant, IrishUp.  Thanks for posting.  I love the explanation of genotype vs. phenotype especially.

IrishUp:

THANK YOU! Your explanation is wonderful. You are a born teacher. I can't imagine how you were able to take such a complex issue and break it down for us lay people but I understood everything you said.

I am taking this information to heart in regards to my son. He is not ED at all but his diet stinks! He does not get enough proteins and clearly his brain is not getting the nutrients he needs. This helps me to redouble my efforts to get protein in him at least at every main meal of the day.

WOW, you really are a jewel in our midst. Thank you for sharing your knowledge with us.

[QUOTE=Maria]Mamame,

Forgive me for not posting you the link as I am in a hurry.

Go to the FEAST_ED site and look up the Minnesota Starvation Study. It will blow your mind to read about the psychological effects of starvation on healthy people who didn't have EDs. It is textbook case what all of our children with EDs go through. If more Drs read this study thoroughly they will recognize this as the ravages of starvation in their young patients and treat it as such!
[/QUOTE]

http://en.wikipedia.org/wiki/Minnesota_Starvation_Experiment

http://jn.nutrition.org/cgi/content/full/135/6/1347 (I like this website)

It is a little hard to find. It was under the tab "Role of Nutrition".

Irishup,

You rock!

I think we need to add your explanation to our FEAST website, it will help so many parents. Thanks so much, you hit the nail on the head!

It has been awhile since I have posted but i felt I needed to on this subject, my son spent 41/2 mo at Center for Discovery In LA, we were told by the experts that our son's real problem was his character and that he exhibited oppositional defiant disorder, that he may need a longer residential program because AN was not the true problem, I fought them on this because I knew who my child was before the AN, I had the therapist telling me this, well that was a year ago, my son is fully recovered, all that behavior that he exhibited with the AN is gone, he does not have any of the issues that the so called therapist said was a character flaw. I will never again in trust a stranger to take care of my child who I feel I know best, hang in there, it took a year of full nutrition before we saw a full recovery, good thoughts and prayers to everyone today
Denise

homemaker,

What incredibly good news! You waged a heroic battle for your son,
it's great to hear about your victory!!!
Thanks so much for sharing this, it's so encouraging for other families.

And you're right, we had the same experience, with our d. She too, had multiple
diagnoses including personality disorder, and a dictionary of other labels.
Some days I'd like to walk her into the offices of old T's and Psychs...and give them
a chance to talk to her now.

FOOD IS MEDICINE

Way to go mama bear

Lydia -
I'd be honored to have this on the FEAST website, if you think it would be helpful. But could we fix my typos first? Yipes, I thought I HAD proofed it before posting!

Irishup,

Absolutely! If you want to make corrections, you can do that using the edit feature in the lower right of your post.

Thanks so much again, for these insights!

Every time someone else posts on this thread I get more astounded at the poor understanding of ED's by the 'professional' world. (But please keep posting.)

I am so mad and sad that we and our children have been so poorly treated.
It is wrong in so many ways and so destructive. I have looked at a few boards for sufferers lately and 90% of the reasons they give for their illness are miscellaneous blaming statements. There are very few who say things like 'I dieted and it got out of hand". Personally, I think they are fed this hogwash. And sadly, I think most of them carry it around and let it damage them and their relationships for ever.

I once said to my D's N that I really hoped she got to meet my real D. I could see she didn't understand what I was saying and she looked a little like she was sorry for me.

These are not mental health patients, these are medical malnourishment patients with temporary brain malfunctions.

Mamame: your statement "These are not mental health patients, these are medical malnourishment patients with temporary brain malfunctions" is cool.
I am sorry my d has to be labeled for the rest of her life...I know in the medical field, she will be stereotyped.  Unless someday the world will view AN/BN as "temporary brain malfunctions in which people are cured"

IrishUp:  Thank you, I am impressed on how easily you can explain this.  I am happy to know it will be on the FEAST resource list.

I think before we state the notion above we have to look at malnourished people from all walks of life or we risk oversimplifying (and therefore missing possible ways to treat) the illness. For example, people in hospitals become malnourished all the time, or show up malnourished and people in many countries do go hungry all the time and these folks don't develop AN. We do have to accept that there is something else going on besides just malnutrition. There is great delusional thinking, great fear, as well as neurological and biochemical abnormalities yet to be discovered.

" we have to look at malnourished people from all walks of life or we risk oversimplifying"

Yes, in fact it was the thought of how many people worldwide are literally staving yet they do not exhibit these delusions and behaviors, that allowed me to doubt myself that my D had an ED near the beginning of her illness. Not everyone who is malnourished develops an ED.

Re Irishup's post above, I would like to clear up something about BMI. BMI is not meant to be an indicator of anything other than adiposity. It is not meant to be an indicator of overall nutritional well being and it does not indicate whether or not a person has any micronutrient deficiencies or really any type of deficiency. It merely correlates rather well with adiposity at most ages.
I agree that most MDs do not have to take a lot of basic nutrition in school. (I had to take the medical school nutrition class at UAB as part of grad school and it is one of the best medical school nutrition classes in the country and it was just one quarter and very basic) Maybe MDs do not have to know all about nutrition if they are taught how to use a good clinical dietitian. (emphasis on good) It is hard to know everything and maybe I want my surgeon to know how to do surgery very, very well and call upon the RD to do a nutrition risk assessment prior to surgery so the patient is not compromised after surgery any more then they need to be. (wound healing ups the metabolism a lot as does trauma).    

[QUOTE=Waterhous] I think before we state the notion above we have to look at malnourished people from all walks of life or we risk oversimplifying (and therefore missing possible ways to treat) the illness. For example, people in hospitals become malnourished all the time, or show up malnourished and people in many countries do go hungry all the time and these folks don't develop AN. We do have to accept that there is something else going on besides just malnutrition. There is great delusional thinking, great fear, as well as neurological and biochemical abnormalities yet to be discovered. [/QUOTE]

[QUOTE=Waterhous]

I think before we state the notion above we have to look at malnourished people from all walks of life or we risk oversimplifying (and therefore missing possible ways to treat) the illness. For example, people in hospitals become malnourished all the time, or show up malnourished and people in many countries do go hungry all the time and these folks don't develop AN. We do have to accept that there is something else going on besides just malnutrition. There is great delusional thinking, great fear, as well as neurological and biochemical abnormalities yet to be discovered.

[/QUOTE]

PG, I too had had similar thoughts about how culture and socio economics effects the number of cases of ED's. I have seen some abstracts and press on this and I will try to post some info and links in the morning. I'm off to  my bed now.
But, I have read it exists in many cultures and across the board economically.

Just from remembering all the faces I saw at my D's ED treatment centers......I don't recall one single Afro American or Asian American........but do recall all caucasions and a few Latino. Can't explain why....just what I veiwed.

Rates of minorities with eating disorders are similar to those of white women

74% of American Indian girls reported dieting and purging with diet pills

Essence magazine, in 1994, reported that 53.5% of their respondents, African-American females were at risk of an eating disorder

Eating disorders are one of the most common psychological problems facing young women in Japan.

Studies suggest that 5 to 15 percent of people with anorexia or bulimia are males.

"Ethnicity and Eating Disorders
Eating disorders are often perceived to be an affliction of Caucasian girls and young women in middle and upper socioeconomic classes. Nevertheless, increasing numbers of cases are being seen in men and women of all different ethnic and cultural groups.

Girls and women from all ethnic and racial groups may suffer from eating disorders and disordered eating. The specific nature of the most common eating problems, as well as risk and protective factors, may vary from group to group, but no population is exempt.

Research findings regarding prevalence rates and specific types of problems among particular groups are limited, but it is evident that disturbed eating behaviors and attitudes occur across all cultures."

http://www.state.sc.us/dmh/anorexia/statistics.htm
http://eating-disorders.emedtv.com/eating-disorders/eating-disorder-statistics-p2.html

I am deferring to Lydia in this issue because she was an administrator in Public Health for many years. So Lydia, if anything strikes you as inaccurate, feel free to let us know.

Just a couple of thoughts. In general, minorities are less likely to seek and have access to appropriate health care than Caucasians. Millions of Hispanics don't even have a PCP and get all of their health care needs met through the ER.
I can imagine this extends to EDs as well. Just pondering some thoughts here.... Does a culture of poverty make a difference in the development of EDs? If you live in a state of semi-starvation and don't have ready access to food; you are obviously not going to be thinking about dieting. All you want is food (as per the MN study). And IF, for the sake of argument, you have the wiring to have an ED, then does your environment match the disease and therefore goes unnoticed? 

There was a great link posted here a while back where an UK researcher went to Belize or one of those islands. There, big and voluptuous equaled beautiful. Nobody  dieted and they had no access to media images of thin beauty, etc. No Dr had ever  heard of EDs in that island or were even aware of it. Somehow, after almost giving up, he identified 12 women who would fit the category of EDs though they had not been identified or DX as such.

In the case of EDs, it is still considered a very shameful disease in some cultures (Hispanic, Middle Eastern and Asian). Awareness is increasing in South America, as high profile models have died from EDs. Argentina has the highest % of Eating Disorders, per capita, in the world. Brazil is getting up there, though Bulimia seems to be more prevalent than Anorexia. My sister went to Brazil last year for a youth conference. There were about 2,000 kids and she lost count of the number of girls who told her that they were struggling with bulimia. There is a mentality that it is almost obscene in South America that people would "choose" to starve themselves when there are poor people who are literally trying not to die from starvation and malnutrition. The view of EDs is 100% old school.

Bottom line, I agree with Lydia, this is an opportunistic disease that strikes across the board but not all cultures and ethnic groups are going to deal with it in the same way.

Thanks Lydia! I knew I could count on you! You are awesome!
Now that I see that ethnic groups are just as susceptible to EDs, it makes me think that we need to reach out to these groups more. If we aren't seeing their faces it must be because they don't know where to turn for help. Perhaps the lower income families don't have access to computers to gain knowledge as easily. I find this very interesting, especially when I am thinking about how to make changes to eradicate EDs.

Oh my bad! I just saw the posts above that said basically what I said

You are right, Asia is a huge continent with multiple cultures. They are not as cohesive as say South American culture. I based that comment on two experiences.

After I graduated from college, I worked for the Office of International Students. Our Southeast Asian students were primarily from Japan and Korea. Anything that remotely was considered mental or behavioral was considered shameful or taboo. We had kids struggling with great depression and anxiety but it was impossible to get them to go to the student center for help. I remember one time, one of the Japanese students was misbehaving in the dorms. We were not getting through to him and he was arrogant and disrespectful. So one day, I called his Dad in Japan. By the time, Dad was done with him, the kid was bowing to me, asking my forgiveness, and giving me his credit card for the damage he had done to his dorm room )

More recently, I have been interested in this issue because there is a large population of boarding Korean students in my d's school. I am HORRIFIED that many of these girls are so thin that they have to be starving themselves to look this way. I have found out that indeed they do starve themselves because as you rightly pointed out, thin is desirable and good in many of these countries. Their dorm mothers have said that EDs are taboo but the pursuit of thinness is considered a sign of discipline.

Re. the Middle East, I know of a counselor from Europe who is living in Egypt and he and his wife went there to help people who deal with disordered eating (both overeating and under eating). He says it is a hidden problem but more prevalent than society would admit to.

Is this your experience too?

Wow, fabulous!
Do you guys sleep at night?
I think I'll just go back to bed and read!

I'll look for the article I just read on the Middle East and ED. 

The Argentina fact does not surprise me. The only man who has ever commented on my weight is an Argentinian (He said I looked better now I had loss a few pounds. Supposedly the last time he saw me I was, well he puffed out his cheeks.). They are also the place to go for a deal on cosmetic surgery.

Wow! It is this kind of thinking (the man you described) that ED loves! It takes a secure person to be able to hear someone say something like that and not let it get to them. You go girl! This is the type of thinking we cannot let our kids buy into and we must make it clear that it is wrong! People come in all shapes and sizes and they are all beautiful in the eyes of our maker. That is what we need to emphasize in our society.

Remember the scandal during the Olympics opening ceremony? They had a pretty little girl lip sync a song that another cute (but apparently not by Chinese standards) girl sang. The Chinese leadership were completely unapologetic about it. They said they wanted the most beautiful people to represent China before the world.

Maybe the difference between here and there is that the Chinese will actually admit to it? I do think it is worse there too.

So, you are right. I was not referring to China when I said Asia. I guess I have to be careful with generalizations.

http://www.thenational.ae/article/20090101/FRONTIERS/934258729/1036

This is the article I remembered.

I have spent time in four different Asian countries and in the Middle East. I have never had so may comments by women about my looks as I did in those countries. I have been called "Barbie" and been fawned over, stared at. I always found it embarrassing rather than flattering.
I think it is tragic that one look is thought to be the look that is the best. 
Beauty looked at like this is so superficial, so flawed and temporary. Wild flowers or hybrid roses, all beautiful all temporary.    

Taking Lydia’s suggestion, I’ve rewritten this both to clean it up, and to add in some of the excellent points of other commenters.

Quote:

I asked earlier in the thread if starvation of the brain and weight loss are the not necessarily the same thing. I would love a knowledgeable answer to this, anyone???

Are BN and AN really one with different physical symptoms?

And why don't Dr's get that nutrition is so important?

Mamame;
You posed very interesting questions. I am not a neurologist, neuroscientist, or ED clinician. I am a clinical researcher with >15yr experience (in the process of a loooong interrupted PhD) who has perforce given herself a crash course in EDs. My undergrad background was Anth/Psych with heavy focus on the biological bases of human behavior, and I had intended back then to become an adolescent psychologist (who knew! the irony, it burns!). With that in mind; here is my shot at answering very complicated - and GREAT! questions.

1) I would say that any time you are running consistent macro nutrient (ie carbs, fats, proteins) or micro-nutrient (specific vitamins and minerals) deficiencies for extended periods of time, you run the risk of organ malfunction - including the brain. Your brain is "calorically expensive"; it takes a lot of carbs, evenly spread through the day to work properly, and lots of fats – including sterols - to maintain its physical integrity. Additionally, the brain is a very complex electro-chemical processor. It needs appropriate balances of vitamins and minerals to run properly. So any kind of malnutrition is bound to begin to affect the brain's functions if sustained for long enough, or if severe enough. HOWEVER, malnutrition may or may not result in weight loss, particularly if the deficiencies are of micro-nutrients. Someone who is w/r but getting insufficient protein or fats will be also be adversely affecting many organs including the brain. Also, there is huge variability across people in how much malnutrition will have how severe effects. The last complicating factor I'll mention is that, as with many diseases, if you've suffered from malnutrition once, you're more prone to it's effects if it recurs, so that someone whose had AN but is w/r will often start having AN symptoms with even very minor recurrence of incidental restriction like from a stomach flu or a busy day where a meal or two gets skipped. For these reasons, BMI alone can be a poor indicator of overall nutritional status; BMI alone also is not likely to give much insight into how individual organs are functioning. Additionally, BMI can be of limited utility when full growth has not yet been achieved. Unfortunately, Western medicine has a tendency to like to use easy outcome measures as endpoints of clinical treatment, which translates all too often into clinicians and insurers using BMI as the only outcome measure. Interestingly, this paradigm does not exist across diseases: no one cuts off your access to cardiologists and anti-hypertensive medications once your blood-pressure gets below the hypertension threshold. They keep treating you because they know that such long-term support will be needed to maintain your health!

2) The answers in the literature to this are Yes, No, Sometimes, and We Don't Know! Emerging studies seem to indicate that people who primarily develop AN versus BN are different from each other both neurologically and psychologically in ways that can be measured. However, this picture is muddied somewhat by the fact that it is known that about 50% of AN patients will develop BN symptoms and behaviors. Another confounder is that some of the deficits and co-morbidities are the same between the two groups, although there are clearly tendencies that show up more often with one diagnosis or the other (eg, BN associated more with risk taking behaviors, AN associated more with perfectionist behaviors). IMHO the biggest caveat is that diagnosing physical pathology based on human behavior is rotten business, because human behavior is really complex.

Our genetic heritage is collectively called our genotype. How genetics are outwardly expressed by an individual is called the phenotype. If you know someone's blood type - their blood phenotype, you can make some educated predictions about their genotype. No matter what has happened to a person, it won't change their blood type (the exception being some bone-marrow transplants). But there are other physical traits that may make it harder to guess the genotype because the environment does interplay with the genotype- an example all too familiar here will be that lifetime nutritional status will impact on the body’s genetic height and weight. But human behavior is MUCH more complex genetically and also HUGELY influenced by our experiences. Trying to go from a person's phenotype to their genotype is really NOT something we can do at this point.  My prediction is that no matter how good we get at the genetics of understanding behavior, we'll never be able to perfectly predict the genes from the behavior, OR the behavior from the genes.  Providers usually take a family history when a patient presents with a disease (e.g. coronary artery disease, breast cancer, depression, ED). They are looking for clues as to how strong the genetic component may be in the disease process, as well as to assess whether a strong familial presence may have had an effect on the disease course for the individual. This is important information, but good clinicians know that regardless of the family genetics or the population-level experience, the disease course for a given person is never set in stone.

3). Simple; MOST US doctors are not taught extensively about nutrition. I can say this with some inside authority - for 10yrs half of my job was coordinating the education of 2nd year medical students at a major teaching hospital. The entire nutrition component of four years of medical school for our students was about 3hr of instruction that focused mostly on adult hospital inpatients. Unless the Dr. in question has sought out an elective rotation with more nutritional focus (that might not be until after med school, if at all), they have not received any comprehensive or applied education on the effects of nutrition on the body beyond what is taught incidentally in their classes. Of course, doctors will know about diseases like Scurvy (vitamin C deficiency), Goiter (iodine deficiency), Kwashiorkor (protein deficiency) and the like. Pediatricians certainly get nutritional education, but to my knowledge it tends to be focused on nutrition, growth, and development (including fetal development). Research into how malnutrition affects the brain is not a central point of medical education, nor is it a widespread focus in either neurology or psychiatry. We are only just starting to integrate behavior with underlying physical pathology in the brain, and therefore making the leap from nutrition = physical brain status, physical brain status = observed behavior is NOT something most doctors in the US have been trained to do.

Irishup,

Thanks for editing and updating your post. This IS helpful.

On Mamame's recommendation, I looked up some of her early posts. I thought I'd bump this one because I think there might be other newbies like me who could really benefit from this thread...particularly IrishUp's excellent response to Mamame's questions.

Hope that's OK.

Very interesting!!

Shux, when you posted the description of your son it reminded me of the hell we went through with D for over a year before really treating the problem.
One of the things that has made me so happy about our new T is that she talked with D about the psychological effects of starvation, the Minnesota Study and how many of her symptoms will probably abate with adequate regular nutrition. She also stated that many Dr's don't know this. I pointed out how we had already seen this and talked to D about how much better her mood and functioning is already. D accepted this but I got the impression she wanted to hold on to the past Dxs as she identifies with them. Time will tell.
D was at her most psychologically compromised state when she was purging.