F.E.A.S.T's Around The Dinner Table forum

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Alwaysthere
So after my earlier post and hearing everyone's feedback, it's led me back to this again.

I do believe this is biologically based. I think that makes a lot of sense. I guess I always thought something originally had to bring this on though and trigger what was always buried below. Just when I feel like I have things semi figured out, I get off track again and get confused. Maybe someone can help walk me through this...

Pre-disposed biologically--- event/stressor in life occurs--- ED crawls out--- takes over--- individual works to regain weight--- weight restoration happens--- (same type of event/stressor happens again)--- ED surfaces again

OR

Pre-disposed biologically--- ED will surface no matter what--- takes over---individual works to regain weight--- weight restoration happens--- ED will eventually come back because that's how the brain is wired


My sister keeps saying that she has discovered, while at her residential treatment, that this "ED" goes way deeper then she realized. When she says things like that, it leads me to think there was something that happened way back that triggered this to happen. And if it's all just biological, wouldn't that mean that as soon as she's weight restored, her brain would function properly and she could keep the ED away? But with so many people relapsing, that tells me it's more then just biological. That certain things will bring it on again.

I know everyone says there's no point in looking back, but isn't that a relevant piece to all of this? My head hurts....
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ValentinaGermania
It is not that easy to explain. In many cases there is a biological genetic predisposition to AN. When these people that have that predisposition lose weight they do not react like normal people and gain that weight again by eating more (which is the normal reaction of the body to weight loss) but these people cannot stop the weight loss any more and go down the rabbit hole of AN
.
This initial weight loss can happen because of some trauma or bullying in school but in many cases (and I must say most cases I saw) it is caused by healthy eating thoughts or a change of diet to vegetarian or vegan eating or even a stomach bug. With boys the biggest risk is excessive sports. In some cases I know an ED was caused by stuff like fitbit.

In many cases parents see that happen:
the patients gain the lost weight, they maintain a good weight or increase it while they are growing and they get back to normal eating behaviours without restrictions and then brain recovery starts and ED thoughts and behaviour fade away slowly. I did not believe that this can happen before I saw it with my own eyes.

In these cases the ED is moved out and when the patient maintains that good state and does not start to restrict and diet again the ED is kept away. They are recovered. But if they start a diet again and lose weight again they relapse again. It is like diabetes. If you follow the rules and take your insulin you can live a totally normal life. But if you stop the insulin the diabetes comes back within a few hours...

What your sister maybe means by saying that the ED goes deeper than she realised is that she did not realise that it is kind of an addiction and she cannot stop her behaviour any more although she knew that it was not good for her and unhealthy and that she could die from it. That is called asognosia and is part of the disease.

In the last 3 years I saw NO patient relapse on a good weight and state. All patients I saw relapse or heard of their relapses did that because they lost weight and the ED moved back in quite quick. The weight loss was in most cases because of a) too low target weight and no buffer, b) too early stop of supervision and help with meals.
Keep feeding. There is light at the end of the tunnel.
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Enn

Well I like math and chemistry:
Biological Predispostion (genetics) + the environment (messages of weight etc..)+ catalyst (stressor, eating healthy, trauma (physical or emotional))---> weight loss ---> ED thoughts----> More weight loss and obsessive ED thoughts and that becomes a vicious cycle.
Of course it is not a linear correlation. It is just how I see it happening here.

For example Type 2  diabetes is heritable in nature so If someone has many family members with it, the risk of getting it is very high. Then with the right  environmental conditions, stress, meds, weight gain here, they can spiral and become diabetic. But not all people with these stressors get diabetes, just those with the "right" genetics. Learning the tools to manage the illness and getting the right meds and lifestyle is the treatment here. It is chronic and learning and keeping on with the proper treatment is key.  Kind of like ED.... but not exactly. 

As for your sister and ED going deeper, hard to know what she means unless she tells you, I guess. I think my D's ED was there years before she declared herself and ended up in hospital.
I know she had no control, I knew she did not have a trauma (she was likely 9 when it started and 11 when diagnosed). She grew, she was in a relative energy deficit and I did not know she should have been eating more and then BAM.. well that is what seemed to happen here. 

Many of us have figured out that there was ED in the family too. There is that genetic link. It is so interesting. I wish we had the "right answers" so that we could prevent it. That is what the genetic studies are doing.  They are Finding links to metabolic pathways that can be manipulated to figure out how to prevent and treat EDs' (AN in particular) better. 

This likely does not answer your question, just my rambling thoughts at the end of my work day.😊



When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
If you haven't already read it I would highly recommend Decoding Anorexia - by Carrie Arnold. It details a lot of the neuro-biology and genetics related to ED and may help to clarify some of your questions. There is a lot of neural rewiring in recovery from an eating disorder. Although food is an essential part of recovery for a significant proportion it is not the only component of getting better.
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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deenl
Tabitha Farrar also explains it very well. I find her books much easier than the admittedly excellent website. I like the logical progression of Rehabilitate, Rewire, Recover. And it has lots of helpful tools and techniques.
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Torie
Alwaysthere wrote:

My sister keeps saying that she has discovered, while at her residential treatment, that this "ED" goes way deeper then she realized. When she says things like that, it leads me to think there was something that happened way back that triggered this to happen. And if it's all just biological, wouldn't that mean that as soon as she's weight restored, her brain would function properly and she could keep the ED away? But with so many people relapsing, that tells me it's more then just biological. That certain things will bring it on again.

When they lose all that weight, their brains actually shrink.  You can see it on a scan.  After weight restoration, it takes a ridiculously long time for brain healing and rewiring - three years of being wr in my d's case.  And that is one of the quicker cases.  (She only restricted for a few months, and still, it took years to get back to herself.)

I think my d will always be vulnerable to AN.  I have stressed that she cannot diet and she cannot skip meals like her friends can.  Unfair?  Sure.  You bet.  So sorry about that, but it is like how an alcoholic cannot have a few drinks.

If you ever find out what she means about it going deep, please let us know.

Best, xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mjkz
I think too the personality traits of perfectionism, inflexibility, rule driven, drive-for-order and symmetry, excessive doubt, and cautiousness that are found in people who develop eating disorders could be what she is talking about.  They are common traits found even before the eating disorder manifests itself.

Another thing I have noticed is that the longer someone has an eating disorder, the more often it becomes their sense of self.  I remember the day my daughter realized she no longer fit the criteria for anorexia.  She looked so lost and said but what am I now?  For older sufferers and those who have been sick a long time, they lose their sense of self as the ED has been so much a part of their lives. 
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Barberton
I agree with all of the above. Instead of looking backwards, focus on helping your sister to 'rewire' her thoughts/behaviors so that she can move forward. 
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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kazi67
Hi alwaysthere
my d had terrible anxiety before the ED dx
so the anxiety kind of morphed into AN

Obviously as they say it’s genetic etc so she was predisposed to it and a bullying incident may of also triggered my d ED
whatever triggered it doesn’t really matter to start with, they have to get to a healthy weight then if any other MH issues to deal with then the team will look at that 

hopefully like my d your sister will learn healthier coping strategies at treatment to cope with her anxiety/stress  (whatever was the trigger) 
depression may also be a factor and medications may be helpful which would also be worked out whilst in treatment 
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Mamaroo
There is a saying which I always repeat to myself whenever I wonder what I did wrong: "Genetics load the gun, environment pulls the trigger". For those of us who have been on this forum for years, know that there are several environmental triggers which causes the initial weight loss. In our case it was my d who decided she wanted to practise acro and gymnastic moves the whole time.  For others it was fasting, dental procedure, tummy bug or other illness, dieting, 'healthy' eating or becoming a vegetarian or vegan etc. Some did have traumatic experiences and they quickly realised they could dampen their anxiety by restricting food,  however restricting results in the body being starved and that in itself causes more anxiety,  so a self reinforcing loop starts.

I tell my d, that she can never go on a diet, nor can she become a vegetarian/vegan and that she must eat every couple of hours. I explain it to her that genetically she has a very high metabolism and that her nutritional needs are different than most people. Luckily her friends love to eat, so she doesn't feel different. 
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Alwaysthere
Thank you, everyone!

Newest update, while in treatment she shared with us that they expect this has been going on (off and on) for about 14 years. This makes me concerned because the over-all message on this forum seems to be the longer you have it, the more difficult it will be. She said the eating of the food has started to get a little bit better, but the biggest issue now is trying to learn better coping mechanisms to stress. Apparently she has felt stress over many things her entire life and her way of coping with that stress became extensive exercise and healthy eating. She also said that she is still under high observation and when I asked why, she said it was probably because she punched a wall the other day. When I asked her what brought that response on, she said she didn't know and that she doesn't understand why she does some of the things she does now. 🙁

I'm assuming, please correct me if I'm wrong, that the physical outburst stems from the ED recognizing that she's pushing back against it and so, almost like a petulant child, the ED is coming out in other forms now. Does that reasoning sound right?
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ValentinaGermania
Totally correct. My d did really crazy things and did not even remember them afterwards and today 3 years in recovery she has forgotten most of the things that happened in the dark days (for Gods sake).

"This makes me concerned because the over-all message on this forum seems to be the longer you have it, the more difficult it will be."
This is true. BUT: Even after a long time ED can be treated and patients can recover 100%. The brain is a wonderful organ. It means that your sisters journey will be longer than most that you read here but it does not mean she cannot recover from that.

"Apparently she has felt stress over many things her entire life and her way of coping with that stress became extensive exercise and healthy eating."
Add self harm to that list and you are where most of us here are. We had no extensive exercise but restriktive eating and self harm. Others purge. You are correct, she needs to learn how to cope with stress another way. Here a punching bag helped a lot. And get her blood results on a healthy level (many ED patients suffer from malnutrition in minerals and vitamins). And to help her learn to figure our what are stress factors for her and how to avoid them.
She can learn that. And you can help her to learn that.
Keep feeding. There is light at the end of the tunnel.
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