Can Anyone Help Or Offer Me Support?

Please... HELP!

Hello Everyone, I only joined this website yesterday so I'm still finding my feet so to speak.

I am desperate for advice and support to be honest, I'll give you a brief outline of my illness:

I've been ill and getting worse for 14 years, I'm now 23.

I am diagnosed with Autism, OCD, ADHD, Ehlers Danlos Syndrome and Anorexia Nervosa (which I do not have as I will explain), I have also had multiple head injuries over the years and severe, long lasting trauma and stress.

Its reached a stage where I can eat absolutely nothing at all without getting the most hideous gastro-intestinal distress imaginable. Constipation, very rapid weight gain due to water retention, bloating to the point where I look 6 months pregnant, excruciating pain in my liver, awful stinking flatulence... You name it.

I haven't been diagnosed with anything. I've had tests on my physical digestive system which show it SHOULD be working in perfect order. I've have also been labeled as someone with Anorexia Nervosa and a liar by the medical profession.

I am NOT anorexic, I am desperate to eat and I HATE being underweight. I have spent a fortune on private treatments trying to figure out what is wrong with me through the years... Acupuncture, Energy Field Therapy, TFT, gastroenterologists etc...

I've tried every single elimination diet under the sun and they did nothing. ALL food does the same things to me and most drinks.

Mercifully my GP is prescribing me Elemental 028 cartons at the moment But for how long I really don't know. I can just about tolerate these as long as I drink them very slowly, but getting in adequate calories is so difficult when I just get terrible bloating and wind from them. I am also terrified I will have the drinks taken off me again, because I SHOULD in theory be able to eat, and forced to just completely starve, as has been the case so many times before.

There have been very rare occasions when for whatever reason my symptoms have completely vanished! I was able to eat and eat and eat, it was amazing! It used to happened when I went on holiday for a few days or was out of my own environment. But then when I came home again and got back into my life the symptoms would come back.

This suggests that it is ME somehow making myself ill. How the hell I am doing it I don't know, its not a conscious decision. But I seem to have no control over it at all. And I never get "symptom free times" anymore because somehow I am determined to make myself as ill as possible.

How can someone's mind do this to them?

It is real, these symptoms are real and physical and I can't eat because of them, but somehow I am causing it.

I DO NOT want to starve, in fact I hate being like this, I just want my life so desperately it hurts. I will do anything to try and find out what is wrong with me and sort it out. I am very very underweight and losing weight very rapidly, it is dangerous and I am at risk of being sectioned and force fed in hospital and made ill... again!

I am sorry this post is such a gloomy one, I really want to post one saying things are getting better and I look forward to the day when I can. But this is my desperate situation right now.

Why the medical profession think I would intentionally starve myself for no reason is beyond me, NOBODY, would do that and it sickens me to be labeled like this.

I just want to be like other 23 year olds and go to college, get a job and just go out for a meal and drink with my mates and make up for all the lost years. I WILL do this when I am well but I have to find out what this is 1st and then sort it out. :rosette1:

Please, anyone who might be able to offer advice, support, or if anyone has been in a similar situation to me please can you contact me? I know this is an odd and complicated situation. :redface:

Thank you, so much xxx

Hi supercell
and welcome

I'm not familiar with eating disorders so can't really suggest anything.
But, this diagnosis of Ehlers Danlos? have you been given that diagnosis? From what I know about it, close monitoring is needed by the medical profession as it affects the digestive tract too.
Also, you've seen a gastoenterologist? Did they do a colonoscopy, endoscopy, any scans?
Head injuries? Are you under a neurologist for these?
You say you have a diagnosis of Autism? Have you contacted The National Autistic Society for help?
Someone else will come along to help you regarding eating or rather not eating.
lotsa luv
Joan xxx

Thank you Joan for your reply.

Yes I've already all those gastro tests, I don't have anything wrong with my digestive system, the Ehlers Danlos doesn't seem to be the culprit either, because I've been tested for that.

Concerning eating disorders care, I've only ever been treated for Anorexia, for 11 whole years, and since this has never actually been the problem I've never been able to recover and I've just deteriorated to the stage where now, I can't eat anything at all without being really ill.

However one thing you mention has never ever been looked at. The Autism, or the multiple head injuries.

I have had one test done which has shown the right side of my brain is not getting enough blood, I wish I had more answers to be honest.

Does anyone know, can head injuries causes problems with food digestion?

I'm glad you mentioned that because although I'd considered it before as a possible cause looking on the internet I've never managed to find any links between food digestion or head injuries.

But thanks so much, I really appreciate your words

xxx

Hiya Heidi

I know about dysphasia and head injury. This condition, if severe, can result in malnutrition, or problems with food falling into the airway, which can result in illness. In this case, a speech and language therapist would be the person to see.
As you are in the UK, these people are fantastic!

http://www.headway.org.uk/home.aspx

They could put you in the right direction.

I work with kids with ASD and I found this for you, it's very common in my school!

http://www.theautismcentre.co.uk/2007/01/eating-disorders.html

Interesting reading. Something to get you on the right path.
The NAS will help you with this Heidi, give them a ring

Joan xxxx

This is an excellent start! Thank you very much, I really appreciate it Joan!

xxx

I know that there have been reports of people diagnosed with ASD that do have GI issue, many go unreported.

As far as being away from home and not having issues, I've had that a few times. In my opinion it's partially stress related. Stress can aggravate a lot of people and cause flares. I went away twice last year and had less problems than when I was at home. The less stress the calmer the body is, muscles aren't as tight, you are more relaxed.
The other thing to consider is what you were actually eating when you were away. Was it the same foods you would have eaten at home, or was it all together different?

Yes I agree with you vonfunk, this is definitely stress related, its unbelievable the effect stress can actually have on the body I think.

I'm glad I'm not the only one who has had the bizarre and inexplicable "Holiday, freedom," from digestion problems.

Also Its not to do with the kind of food I was eating on my holiday though, I have tried every combination of food and diet imaginable, my problems don't seem to be actually food related, because its just ALL food that makes me ill in the same way.

GI problems and Autism are linked as well, I'm very annoyed with the medical profession for completely ignoring all my neurological issues and just forcing me into Eating Disorder wards because its easy and cheap.

It is so obvious when you look at it that it all does seem neurological. That's the British NHS for you, they don't like complicated people, they just want to save money.

Sorry I sound so bitter! I am just upset though that it has got to this stage and has lasted this long, I just want to be well.

Joan I have just look at that second Link you posted on here!

OMG!

That is exactly what I have been searching for! It has it all in a Nutshell! That's me!

I am going to print that off and take it round to my GP and see what he has to say.

Thank you thank you thank you!

I have done the GF/CF diet before and it made no difference for me, but all that stuff about the ENS and the stuff about being unable to absorb the nutrients from food, and getting nasty digestion symptoms, and even the hormonal problems and the stuff to do with the Liver and Pancreas that is me all over. All the stuff about the CNS... excellent. It makes so much sense.

You have no idea how long I have been looking for something that actually describes something that sounds like me, but this is it!

:mbh:

Wow!

xxx

I just wanted to say hi and welcome

I do not have any added great advice to give you though. Hopefully what was mentioned above will help you and will start you on the right path to health. I hope things improve for you and that you can start to feel well.

Hiya Heidi

I'm so happy you've got a start.
I remembered the link from a training day years ago, we have obscure days like that, keeping abreast of current trends in ASD!
good luck hun
xxx

Thank you Jennjenn for your lovely welcome, I really appreciate that! :thumleft:

I am so very glad you do get training like that Joan, it has certainly been of great benefit to me! I feel like I just took a big step closer towards finding out the problem and getting better and it is thrilling. :ybiggrin:

Thank you once again xxx

:welcome: So glad you found us Heidi! I just want you to know that you aren't alone, alot of us have doctors assume that when you're a young woman and underweight you must have anorexia. The exact same thing happened to me-I was diagnosed with it when I was 14 and I had extreme pain everytime I ate, so I tried to avoid eating because I was scared of the pain.

It wasn't until I was bleeding so terribly and passed out at work,ended up in the ER that doctors began looking into other possibilities. My colon looked healthy for years, never could get a difinitive diagnosis til I was 26. Just because this disease (and many others) is hard to diagnose at times doesn't mean everything is normal.

Joan obviously is awesome and has alot more education and understanding of your health problems than I do, but just a thought, have they ever checked you for H. pylori or celiac disease?

You must be a very stong person to have endured so much at such a young age. Just keep hanging tough and stay strong, keep up the fight til you get answers!:thumleft:

Thank you Jeannette for your lovely post!

Wow! They did it to you too? Labeled you Anorexic when you aren't, they are bastards (excuse french! It just really aggravates me, and I know what you must have been through). :mad2:

Like you my colon is looking good so therefore I must be lying, according to the medical profession anyway!... unbelievable... I wonder how many others have been incorrectly labeled "mentally ill" when they aren't? Probably more than we could possibly imagine I think. :yfrown:

Concerning those things you mention H. pylori and celiac disease.

I have never been tested for H. pylori, but I know I don't have Celiac because ALL food makes me ill the same, even just plain vegetables on their own.

I will have a look into this H. pylori though, I have heard of it.

Thank you once again, and I am so sorry for what you've had to go through on account of so called professionals who can't see past the end of their own noses. Maybe one day medicine stop being so arrogant! Or is that wishful thinking?

Big Hugs :grr1d:
xxx

hi Heidi, welcome to the forum

i am so pleased that our Joan had some knowledge that, to me, sounds as if she's hit the nail on the head! (thank you Joan!)

you certainly aren't the first to be misdiagnosed with anorexia when in fact it's not that at all.. i was - also in my early 20s, got sent to a psychiatrist who undoubtedly needed more psychiatric help than i did, and who tried to convince me i was deliberately hurting myself by not eating because of 'issues' that he tried to draw out of me... total rubbish. the only issue i had was that it hurt when i ate, so i stopped eating, just drank milk to get some goodness into me.

turned out i had Crohn's.

i agree that, along with investigating the suggestions Joan's made, you could benefit from being under a consultant for the Autism.. my son has Asperger's, and once he was out of childhood, he was taken off the paeditrician's list, and nothing was offered instead.. we've struggled, and still do, to get advice and support for him as he gets older, and i am seriously thinking now of getting an adult psychiatric appointment for him - just for the support aspect.

explore every single path that applies to you - and i'm sure you'll find the right professional eventually who will know exactly what's happening, and turn your life around.

good luck, Heidi!

Thank you Dingbat for your message!

It makes me feel good that I'm not alone in being misdiagnosed with Anorexia, but I am very very sad that others have had to go through the stigma of being labeled and called a liar as well. It stinks! :mad2:

I don't know what it is but once you become and adult and leave paediatric care automatically you don't matter anymore. The same obviously happened to your son! You just get dumped on the scrap heap and unless you've got deep enough pockets to go private for all medical care. I really really hope you can get him the support he needs.

I think I'm in a similar situation to your son, its a real struggle getting people to take you seriously and listen to you. My GP doesn't even believe I have Autism, in spite of the clear diagnosis, overwhelming history and evidence and the fact that I had to a special residential college because I was so severe! I don't know what it is, arrogance? Its beyond me. But it means we don't get referrals when they are desperately needed. Horrible situations to be in.

Please keep me posted on how you get on with your son!

Again thank you so much for your support and advice, it means a lot

xxx