Where can i get help for this 'eating disorder' on the NHS?

[Removebeforeusing]

Sorry this is long but I wonder if anyone could help me?

I used the words eating disorder in my title as I don't really know what the hell it is but over the years I am getting worse and have been getting nowhere with the NHS. I simply can not afford private help so am now seemingly forever in a constant loop of frustration.

I am 51. WhenI was a child of approx. 7/8 I developed a fear of eating. I was absolutely convinced that my food was being poisoned (not sure I believed anyone in particular was doing this but I know it stemmed from a tv drama show I was allowed to watch in which a man tried to kill off his wife by injecting a box of chocolates with arsenic or similar and gifting it to her. Around this time I convinced myself my food was contaminated/poisoned and I would cut bits off from the 'offending' foods and pop them under my plate (mum said there would be a ring of uneaten food when she lifted the plate at the end of dinner), I would then cautiously nibble on the bits I deemed safe enough to consume. I would also believe my saliva to be contaminated so would just randomly spit on the floor in our house and into the sleeves of my clothes, they were always sodden!
I don't recall how long this actually went on for or what my parents would say to me at the time but they have talked about it since I have been an adult. However, I have a history of anxiety, ocd and unusual behaviours and it wasn't a one off incident so just something they put up with as I've always been 'highly strung' according to them.

Following this issue I probably went back to some kind of eating normally although I can not 1005 say if that's true as as far as I can remember food has been a bit of an issue for me. I can not say that food has been something I enjoy at all. I have always been wary of it and fully aware of food poisoning and the potential for foods to cause illness, even death. I am very fussy about food, food dates, will throw food away even if its nearing the use by date. If there is any food contamination stories in the news that food come soff the menu for me (ie recent lettuce and ecoli outbreak). I have always eaten to survive and nothing more.

My teens and early 20's were mainly uneventful until I was 25 when I developed IBS out of the blue, it just hit me one day in 1998 and it has never gone away. I have had good times and very bad times with it. Over the years, I have had endless gastroenterology tests and seen several dieticians and been on various diets and cut out various trigger foods etc. I was put on the low fodmap diet around 10 years ago and in retrospect with my past history with food this was a huge mistake as I am now stuck on the elimination side of the diet which is totally unsuitable for a healthy balanced diet. I have since discovered the low fodmap diet should not be advised to anyone with any kind of eating disorder.

That is the problem because for many years now, and its getting worse, I have a huge issue with food. I hate it. In my mind's eye its the instigator to all my gut issues, when I eat it starts a whole series of issues, I feel nauseated, my guts start growling/churning/gurgling, I belch loads and as I appear to have a very strong gastro-colic reflex I often need to go to the loo very soon after eating. Often when I eat (as in breakfast this morning) I feel so nauseous after that I wish I had never put food in to my mouth. I have become very very choosy when deciding what to eat and the moment I perceive a food to have made my tummy feel bad it is straight off the menu to the point that I probably will never eat it again. I now only consume around 12 different foods that I may eat regularly. This lack of diversity has no doubt negatively impacted my gut microbiome as I have now developed gut dysbiosis and SIBO which is greatly exacerbating the whole vicious cycle and is so very difficult to treat. I so very much wish I could be like my friends, they enjoy their food and drink so much to the point many are thinking about their next meal before they've finished the last, I can only but dream of having that kind of relationship with food.

I have invested heavily both financially and emotionally to try to 'cure' myself of these issues but to no avail. I can no longer afford to see anyone privately as I have had to reduce my working hours due to the gut issues.

I am a patient of a London based NHS hospital under their neuro-gastro appointment but tbh they've not been overly helpful. I have been their patient for the last 2 years and have only had a handful of appointments so far. The dietician just advised me to eat as many different foods as I can but in small quantities (I am trying but it is so bloody difficult) and says I most probably have ARFID but now only wants to see me yearly now and I am currently on a year long wait for some acceptance therapy but I have had so many appointments cancelled for this. Should have been May this year but it has been moved to the end of August so fingers crossed I will actually get to speak with someone this time.

Has anyone had any experience of anything like this? is there anything anyone could suggest that I try to help?

As I say, over the years I have tried so much, CBT, counselling, EMDR, Hypnotherapy, Mindfulness, Meditation. Seen private gastros, dieticians, nutritionits etc.

I have no money left for such things but wonder if any mental health meds could help (GP not to helpful tbh). I have tried Sertraline, Citalopram and Escitalopram but they all made the gut issues worse which obviously triggered more anxiety.

Hopeful bump ❤️

Thank you

Hello OP, reading your post I started thinking ARFID before you mentioned it. It doesn’t seem to be included in all adult NHS provision - round here only children can access free support for it. I assume you have looked at the BEAT website? They have helplines and I think forums for peer support: https://www.beateatingdisorders.org.uk
I’m afraid I haven’t got anything else of use but knowing someone who struggles like you, I wanted to send my best wishes.

That sounds so bloody hard. Gut health seems to be the main problem here - have you educated yourself about that, specifically? Perhaps you could figure out 3 meals that are okay for your guts and cycle through them?

I know my DP’s guts are affected by pain killers, so maybe more meds should be avoided? I’m not sure, but would read all I could about gut health if this was happening to me. (Maybe you already have and are still where you are).

Antidepressants have been used for anorexia treatment but I don’t know about this, so bumping.

You’ve explained it all really clearly here, so please tell the doctor at your August appointment what you have told us. Good luck.

I don't know about how ARFID and OCD fit together but they sound very closely linked in the way you are talking about this. Have you ever had any useful help with OCD? But I hope the Beat forums are helpful.

I wonder if this isn’t an ‘eating disorder’ as such but more an OCD which is focussed on eating. Would it be worth following the strategies/treatment for dealing with OCD rather than the methods to treat eating disorders, which I think is actually making things worse.

Thank you *ChoccyJules *

OriginalUsername2
It is becoming so hard. I have had these gut issues for half my life, there really isn’t anything I haven’t bought, paid for or read about in order to help my gut health. I have tried so much and I’ve spent a small fortune but nothing I’ve tried has helped long term sadly. It’s not helped by the fact I have such a poor relationship with food and the healthier I eat, the worse I feel. I have even studied online nutrition courses in order to help myself. I know exactly how and what to eat for good gut health but for me it’s not as simple as buying the foods and just consuming them, there is a whole deep set psychological aspect to it also.
I don’t currently take any medication due to my super sensitive gut as most meds (even paracetamol) can cause issues which is why I am cautious about taking antidepressants but feel I need to break this thought cycle somehow.

Thanks Lopine I will print my op off and show it to them.

PermanentTemporary Elisheva I do have many other OCD behaviours and have had since childhood so it wouldn’t surprise me if it was related to this. It’s just trying to find someone within the NHS who can actually help with this.

Well, I think go to your GP and ask for a referral for help with OCD around food and gut issues. At least get on a waiting list. However bad the lists are, eventually you might actually see someone.

I’ve been back and forth over the years to see various GPs regarding this but all they offer me is CBT for 6 weeks. I’ve tried this endless times and it’s not helped. I fear that I’ll only get help if I pay to see someone privately who actually specialises in this area but sadly I just don’t have the funds for that.

' I have a history of anxiety, ocd and unusual behaviours' is it possible you're autistic OP? Off on a tangent here but anxiety, ocd and eating disorders have high comorbidity with ASD, and 'unusual behaviour' is generally standard for someone with ASD in an NT world!

Up to a third of people with ARFID are also autistic. Just a thought that might help you understand yourself a little more if it makes any sense to you. It might help you understand your unusual thought processes. Obviously also perfectly possible that you're not.

I'm probably ND (DS is and I see it through my family) and I have IBS and it's miserable. Garlic and onions, which are in almost everything it seems, are absolute killers to my stomach with explosive results. I find eating more frequent small meals helps, Kefir helps but I only have a little at a time, taking digestive enzymes (from Holland and Barrett) before I eat something I know is problematic helps, and the next thing I intend to try is Optibac probiotics (but they're pricey I think). I also take an A-Z vitamin quite frequently as I think I have absorption issues and am also often anaemic.

Hope things improve for you OP.

Family member had very similar experiences. Anorexia and addictions are endemic in his family and for many years this was how it was diagnosed and treated. A locum GP who saw him after one particularly distressing episode said he thought it was OCD and needed a multidisciplinary approach. Interestingly he said CBT and talking therapies are terrible for OCD as they encourage the rumination that is one of its symptoms. My family member was treated with an anti-depressant and a very controlled type of exposure therapy, but was also encouraged to embrace group exercise - a kickabout football team. Apparently walking and running, being solitary, aren’t great for OCD either.

I wouldn’t say he is completely cured - still quite fragile emotions and prone to long but unmedicated bouts of low mood - but he is unrecognisable now. Big strong lad with a solid friendship group, a girlfriend, full-on job he seems to relish etc.

I hope you too have a similar positive outcome.

Thank you.

I have given neuro-diversity a lot of thought over recent years. I had spoken to a psychiatrist a few times at the neuro-gastro department. He thought I may possibly have ADHD and has requested that my GP refer me for an assessment. I do believe that I have some autistic traits but I don't appear to tick a lot of the boxes on online autistic tests, I end to always score 20/40 so not overly high, so just not sure on that one and autism assessments are so expensive.

I agree that IBS is miserable. Onions and garlic are an absolute no-no for me, they make me so poorly and as you say they are hidden in so many foods, I am adept at label speed reading!

I also suffer from anaemia and I think I have absorption issues as I needed iron infusions. I take digestive enzymes which help but sadly probiotics make me worse but give the Optibac a go as they do help so many people. There is a website called Tummy MOT, they rate and research various gut health products and have given Optibac their seal of approval. I always check this site before I purchase anything gut related as I have wasted a small fortune on products.

Glad to hear the combined therapy and meds are helping him. It is absolute misery when OCD takes over, so hard for anyone to fully understand, we can not simply switch off our way of thinking as so many expect us to.

I don't suppose you know which anti-depressant your family member takes?

@Removebeforeusing
I think there's a big, black hole where treatment for adults with ARFID is concerned. NHS hasn't got its act together at all as far as I can see.
My adult son has it and I diagnosed it before any health professional managed to but that's by the by.They did eventually.

Having finally been referred to the eating disorders service, they were very sympathetic but said 'sorry but we don't actually deal with it as there's no funding'. He had a referral to a counsellor / psychologist who, luckily, wasn't on the CBT conveyor belt (a whole other story) which was a better experience and did help untangle some of the co-existing issues of rigidity, anxiety etc etc.

It's too long a story to tell and has been going on since he was a child. The positives are that he's definitely better than he was and getting on with life. He does need a lot of subtle support as he's quite fragile and liable to go downhill quite quickly if over stressed. He also has on going stomach / digestion issues which are still being investigated.

Anti depressants are often very individual so knowing what someone else takes may be unhelpful as it may not work in the same way for you. But you probably knew that.

Anyway, I guess you have to push and push for some therapy which helps you. But I do understand how difficult it is to get that help. ARFID and its associated problems seem to fall down all the NHS cracks.

It was on the radio recently, a man I think describing how treatment for OCD changed his life.

It may have been Radio4, all in the mind. There was a women describing innovative treatments.

I wish I could remember more, but definitely think OCD is the bit that needs addressing- through medication- more than anything else.

OP, I believe you have to experiment with different ADs before you find one that suits, but in this case it was Sertraline. It has some nasty side effects but worth the effort of perseverance if my young relative is anything to go by. Best of luck to you.

Have you tried imipramine? It really helped with my IBS. The other thing that may help you is acupuncture, it helped me greatly. Diet suggestions may not help, but in case, instead of Fodmap I went on the Atkins diet, but with added, cooked vegetables. These 3 things cured my IBS completely. Good luck, it is miserable, and hope you manage to conquer it.

Sertraline has revolutionised the life of my relative with severe OCD and anorexia. She's not "cured", as she still has catastrophic thoughts and compulsions - only, now, she's laid-back about having them! It's amazing, she's got twice the free time and ten times the enjoyment in life. She's successfully completed baby-led weaning with her DC, which, previously, she wouldn't have been able to tolerate.

Since you're so uncomfortable already, OP, I should think it's worth giving each of the antidepressants the obligatory six-week trial to see what happens. Some success has been reported for Bupropion with compulsions/addictions.

Thank you everyone.
I’ve made an appointment to see my GP and I shall have a discussion about going on some medication, I don’t think there is any other way I can get through this.

Epwell

I have tried a few TCA’s (Amitriptyline and Nortriptyline) but as my mum suffers from Alzheimer’s the psychiatrist I saw advised me to come off them as they can carry a dementia risk.
I did try acupuncture earlier in the year which was great but I can’t afford it now. I do think I need to try dropping my carbs very low. I have a friend who follows the keto diet and says her IBS is ‘cured’. Not sure I’d want to go full keto and tbh I done want to mess anymore with my diet due to my issues but I will ask the dietitian I’m due to see at the end of the month, see what she advises.

I think if you can get your gut under control your mental health will improve and vice versa. I suffered awful panic attacks when I had IBS, which disappeared after I got physically better. Your gut is sometimes called your second brain for a very good reason. You need to treat both together.
I wondered also if growing some food to eat might help you? Even if you don't have access to a garden you can grow herbs in a window box or on the window sill, or something like peppers? You can grow lots on a balcony. Is there an allotment site near you? On our local allotments we have a community group who grow for the local food bank/community kitchen, you could perhaps see if there is something similar locally which you could get involved in. You can see food being grown and how fresh and lovely food can be - there is nothing quite like eating a raspberry freshly picked from the plant, or strawberries, or raw peas. It might help you reset your thoughts about food and where it comes from.

I could have written this OP. I've had OCD my whole life and a fear of food (I worry about contamination, things being poisoned, I worry that I'll suddenly develop anaphylactic allergies etc).

I also have IBS, but that doesn't hound my life half as much as my OCD.

Feel free to PM me if you'd like.

Over the last 26 years, I have invested heavily and have tried everything to help get my gut issues back on track (I have worked with 3 dieticians and nutritionists).

I live in the countryside. My dh was raised on farms. Every summer he grows runner beans, potatoes, tomatoes, green beans, strawberries, blueberries and herbs. Have done so for years, sadly that hasn't helped me at all.
I eat healthy foods but my diet is very restricted due being mentally stuck on the low fodmap diet because of my issues with food. The trauma from my childhood regarding the food poisoning issue has deep set roots. And whilst I am in total agreement with you regarding home grown produce, indeed nothing taste as good, it is still just food to me and food holds zero interest in fact I fear it. I honestly don't think I will achieve harmony in my gut until my past trauma over it has been tackled.

I am so sorry you suffer the same as me but have to say it is good to finally find someone who actually understands my predicament, most people I know have no concept of just how difficult it is to live like this. Thank you.

I'm sorry you're suffering too. I actually know of a few people in the same position from an online OCD support network I'm in. I was also really relieved when I discovered I wasn't alone.

I have been to the GP many times, it took a while for them to realise it wasn't an eating disorder (technically, as it doesn't pertain to body image), so that sort of treatment wouldn't work, and CBT isn't usually recommended for OCD, which I could have done with knowing sooner too. I have actually found a private therapist that specialises in the condition (other therapists I have spoken to haven't been quite so niche), my first appointment with her is next week, so that may be interesting.

The only real known and effective treatment (other than SSRI's for many) is exposure therapy, but that is much easier said than done, as I'm sure you'll know too. X