I am desperately trying to find help and found the Clever Gits Diet book very insightful. I haven’t been able to eat properly for over 18 months now. I have become highly sensitive to nearly all food – the more I eat the worse my reactions are. At first I became sensitive to sulphites – this was discovered through wine. At the time I stopped drinking alcohol I also found I was reacting to makeup. Since then it has been a downhill slide, with the help of consultants found I am also highly sensitive to salicylates. I’ve also added oxalates to the list. I get different reactions to the different naturally occurring chemicals in food – sulphites cause a red rash on my chest, up my neck and sometimes on my face, along with hot flushes and headache; salycilates mainly cause sinus swelling, itchy eyes and coughing; oxalates cause drowsiness and stuffy sinuses. They can all lead to asthma vomiting, diarrhoea, attacks and migraines.

7 months ago I was taken off food completely and put on Elemental 028. I am still struggling to eat normally and believe it is related to my gut bacteria. Doctors are at a loss and have never seen anything like it. I think I should start with getting my gut bacteria checked but can only find a link to the UBiome which doesn’t cover the UK. What are the other companies that do it here and any ideas how long the results take? I don’t want to launch into the diet side until i understand what has happened to me (so I can avoid it in the future!).

Any suggestions greatly appreciated!

I am also sensitive to amines sulphate salicylates. I found the fed up website and RPAH diet very helpful, and I had a dietitian supervising my diet for over 12 months. There are lists – if you are ok with lettuce beans cabbage but not broccoli spinach and most fruit this might be you also. I am now trialling apple cider vinegar and probiotics to see if that helps. JennyC.

I can’t eat those foods. I tested loads of food one by one and reacted to everything except gluten free pasta. I’m on a strong antihistamine at the moment which let’s me eat for a day or two but then it’s back to nothing when the migraines hit. It’s keeping the allergy type reactions to a minimum but nothing seems to stop the migraines except for not eating.
I’m glad you’re doing better on the RPAH diet:-)

Sorry to hear that. It sounds as if getting gut bacteria checked is the thing to do. Hopefully availability and cost will improve as more people want this done. I agree it sounds the best way to go for multiple sensitivities and especially in your case. I Intend to do this too. JennyC.

Might be worth you looking up histamine Intolerance?

Histaimines are a chemical produced by the body and are also present in foods. I had myself checked out, and found I had moderate histamine Intolerance. Stress can also release histamine.

I am still suffering though, and am trying to find out the best way to manage it. I also found (via a test) that I also have a candida overgrowth. So I think it’s a challenge to deal with both.

I’ve finally had my gut test back! I have multiple bacterial infections, a parastic infection, a yeast infection, elevated yeast, overgowth of good and opportunistic bacteria, a gluten sensitivity (could only be temporary), intestine inflammation, and I’m not digesting protein properly.

These seem to explain most of my symptoms and mean I have endotoxemia which could be causing the chronic migraines. I also have a genetic mutation which causes an energy deficiency throughout my body, so these infections have probably hit me hard and I haven’t been able to fight them off like a normal person.

I’m on a very restricted diet – no gluten, no dairy, no sugar, no carbs and no grains. Basically meat and veg, but those are very limited as I react to salicylates and oxalates. Thank goodness I can still get the elemental drinks. I am also on 4 supplements and fingers crossed I should start seeing an improvement in 3-6 months. It feels like a long time, and I’m struggling with the diet already.

Thank you for all of your feedback. There is now light at the end of the tunnel:-)

Hi Eating Madness

Please could you advise which company you used to carry out your gut test?

I hope you make a good recovery and can start consuming a more varied diet

Regards pussycat

Likewise- and did they advise you next steps? The trouble with restricted diets is that they also incrementally narrow your microbiome so can be a vicious circle

Hi Eating Madness,

You really are having a very unfair share of dietary challenges and I truly hope things improve very soon. I had problems back in the 1980’s and the Doctor who restored me to health after a 5 year period of ill health, was a Dr. Damien Downing. He is currently in private practice in London. Just Google him if you are in a position to get to London and paying privately is an option for you.

His consultations used to be relatively reasonable, but the supplements etc. he prescribed could get very expensive. With annual check-up and taking his supplements my health coped with anything I threw at it until my personal circumstances changed and private medicine was a luxury I could no longer afford.

Dr Downing has been treating leaky guts and using probiotics since the 1980’s. Very much a man ahead of his time. In the 1980’s it was called Nutritional Medicine and he was helping folk with Chronic Fatigue and Allergy and other conditions where the NHS just did not have a clue where to start back then. I remember being put on exclusion diets and rotation diets. At one point I was only allowed to eat literally just Lamb and Pears. If you are going on the very restricted diet, I consider you need good advice from a specialist Doctor, Nutritionist or similar. That way your diet is expanded again as quickly as possible. When people try to do exclusion diets themselves and end up missing out whole food groups for a long period of time they are likely to end up with Nutritional Deficiencies, which can become problematic over time

The Americans refer to this type of medicine, which aims to get to the root of the problem , rather than just mask the symptoms as Functional Medicine. Sadly it appears that any Doctor who wants to use this approach in the UK is still being forced into private practice, because getting to the root of the problem takes up too much time. The Doctor who did the Doctor in the House programs for the Beeb. Dr. Chatterjee is setting up in private practice in the Manchester area to enable him to use this Functional Medicine approach.

Hope this helps you of others.

AARA

Hi Pussycat,
My stool test was done through Diagnostic Solutions Laboratory in the States.
Good luck!

GrahamSPhillips and AARA – I am working with a nutritionist who is closely monitoring me. I am expecting to get worse before I get better, but hopefully it won’t be for long (while I adjust to the supplements). With the state my body has got to, it will take a while to recover completely, but I’m hoping that by Christmas I’ll be eating more than the brussel sprouts and carrots!

Thanks for all of the recommendations, I will refer back to this in due course.

I still can’t believe quite how ill I’ve become from all of this, but think that it was worse about a year ago and that my restricted diet since then had already started to improve my gut. I dread to think what the test would have showed back then. I wouldn’t wish it on anyone and wish the NHS would realise how vital our gut health is to our overall wellbeing and the serious problems that it can cause.

I wish all of you the very best in dealing with your conditions and hope you stay or get on the right path to better health.

Hi Eating Madness,
Thanks for the update. When your back to full health your case is going to make a great case study for someone. If and when you are up to it have you considered keeping a journal/diary, doing a blog, or may be just keeping this forum updated on your progress from time to time. Do not want to put any stress or pressure on you, that is in anyway going to slow your progress.

If we are ever going to get the NHS to work towards becoming a keep folk healthy service, rather than a treat you when your ill service the evidence to change the current mainstream thinking is going to need to come from people who have adopted a non bio medicine approach to regaining their health.

Anyone else up for the challenge?

Hope you are all improving day by day.

AARA

Thank you Eating Madness I will look into this company

Regards pussycat

Hi Eating Madness: I looked at the sample report from diagnostic solutions – they seem to pick up on pathogens and various levels but by no means (from what I can tell) do they provide a complete mapping or diversity like american gut or ubiome or maymygut. I’m wondering therefore what is the basis of your exclusion diet? From the admittedly limited information you’ve shared, I’m a little concerned that you only have 25% of the facts? I hope this is helpful
Graham

GrahamSPhillips – I’m not familiar with how much the other tests you mention show. I’m following the advice of my nutritionist and so far it’s going as she expects.

AARA – I have considered writing a book, but certainly don’t have the energy for it at the moment. I’m not sure what would help others the most.

Hi EatingMadness,

With the problems you are experiencing just now, even having thoughts about what would help others the most says a lot of positive things about your personality and your outlook on life. Today we can only do what we can and it is often very little.

I will share one of the ways of looking at life which I have found helpful. I am blessed with a fantastic view of the North Sea. When I look at all that water, with all its’ beauty and today ‘s millpond like stillness, but often with powerful, potentially destructive crashing waves, I sometimes consider this. Every drop of water, in that sea, has evaporated and become part of a cloud, who knows how many times over. It has then fallen back down to earth as tiny rain drops and eventually become part of a sea or ocean again.

Every decision or action we take towards reclaiming our health is like a single drop of rain. Individually they are tiny, but when we finally start to have the right information, the right thoughts and begin to make the right changes, gradually and over time they can add up to bigger differences than we could ever have believed possible. We all need to stop beating ourselves up for what we ought to have done and just try to make those rain drop sized changes we do have the energy for, or the will power to do or whatever else it is we have today. Even if it is just the thought to say, I will make at least one better food choice tomorrow.

May those small changes bring bigger benefits soon.

AARA

I thought I’d post a quick update. I have been on a very strict diet for over 4 months now and feel like I am finally getting somewhere. It turns out I am highly intolerant to nightshades. A lot of my symptoms have been from eating potatoes, tomatoes and spices. Who knew potatoes and tomatoes could be so bad for you?! It is still early days and I am, still testing gluten and dairy intolerances, but I am starting to feel a lot better and I can eat more. Without the nightshades in my diet, I can eat a range of fresh foods (still not good with processed chemicals) and recently even ate out without too much drama. My chronic pain has been reduced, my migraines are occurring less frequently, my digestive issues are nearly nonexistent and I feel like I am getting the benefit of nutrients from food again. I have naturally reduced my elemental drinks and having got down to 2 day (from 7), this last week I have even had some days without any. I still have a way to go, but I am so excited by this progress and really hope it continues. I can finally see the possibility of my life returning to somewhat normal:-)

Hello, I’m new to this site and this is my first post. I’ve read others comments with interest. I’ve been suffering with eating intolerances for many years now. I was totally fine when I was younger, but somehow over the years, the problems began.

Firstly, just to mention, about a year ago I ended up in hospital with gall bladder issues, and they also found out that I had diverticular disease. So 2 months later I had my gall bladder removed and had been given a significant amount of antibiotic to calm down the diverticular disease and make the imflamation go away. The reason I mention this is more because I’m now reading The Clever Guts Diet, which was recommended to me by a friend, and I realise that the antibiotics I was given, probably killed off a lot of good bacteria in my gut, which may explain my continued fatigue and general feeling of malaise since that time. So I’m now reading and learning about what I can do to redress the balance. BTW, having your gall bladder removed doesn’t really have any effect on every day life – except it slightly changes visits to the loo (there seems to be less bowel control), but as one of the issues with diverticular disease, (which, BTW, approx 50% of the UK population have this by the time they are 50, but most are not even aware of it), it’s only if everything gets inflamed, that you start getting real pains and problems. One of the things they say to try and avoid to prevent further flare ups is getting constipated. Not having a gall bladder seems to address that anyway. Sorry, probably too much information….

Secondly, back to the food intolerances, this is something that I seem to have had for years, although, even now, many doctors still seem to be very dismissive and sceptical about it (Michael Mosely included). Several years ago I was sent to an ‘allergy specialist’ who did a load of prick tests on my arms in relation to pollen, grass seed, cat hair, dog hair, bed bugs etc etc, as he didn’t believe in food allergies. Unsurprisingly, I didn’t react to a single one, and he simply accused me of taking antihistamines during the course of the test – which I obviously hadn’t done as I was desperate to try to find out the cause. So that was a complete waste of time.

I then spent quite a bit of money on a ‘York Test’ where you send off a blood sample and they come back with a list of things that you are supposed to be intolerant of. They said that dairy was a massive red flag for me and that I should avoid it at all costs. They also listed random things like kidney beans and rice, but put in a caveat saying that if you’d recently eaten them, i.e. had a chilli con carne the day before, then they could be ingored! Anyway, so since then I’ve tried my best to avoid dairy products and spent a lot of money on alternative products, only to find that there was no improvement, in fact things have got steadily worse.

The main effect on me is nasal/sinus inflamation, to the point where I cannot breath through my nose at all. This went on for months last year, and believe me, its no fun not being able to breath through your nose. I was trying to eat healthily and choose the right things, but still having no idea what was causing my problems, but it always seemed to be at its worse after eating and drinking. Purely by chance I happened to catch an episode of Embarrassing Bodies on the TV and they had a guy on there with severe allergies and he was sent off to a specialist in Harley Street. So they did lots of tests on him and came back with an intolerance to salycilates. I had never even heard of salycilates, so quickly went onto Google to find out more. I printed off a list and thought they all looked quite harmless, but was prepared to try anything just to breath through my nose again, so started cutting things out of my diet one at a time. I should also mention that in the meantime I’d been back to two or three GPs, who had simply prescribed me nasal steriod spray – which did nothing whatsoever to help. So I hadn’t gone too far down the list, when it got to tomatoes and tomato products like puree. I love tomatoes and had eaten loads in my life, both raw and frequently used them in cooking. Well I cut all tomato products out of my diet for a few days, and was stunned to find I could breath again. I had never imagined or suspected that tomatoes could have been the main problem. They are not the only problem, and wine and fizzy drinks always block my nose up, but since trying to avoid tomatoes as much as possible, my breathing problems have been considerably reduced. Having read some other blogs above, I think I should try and cut potatoes out as well and see how that goes.

One additiional point I would mention is about antihistamines. I was taking these for years, on the advice of a few doctors. These do indeed help, but a side effect of taking antihistamines is they greatly increase restless leg syndrome, which is something else I’ve had for years. Since stopping taking antihistamines and just trying to avoid problem food and drink, I’ve noticed that my RLS has decreased considerably (but not completely) as well.

It’s like there is a impact from every single thing we put into ourselves, whether it be food, drink or medication. There are no easy answers to any of it, and many more people suffer now than used to with intolerances. Doctors, please take note, food intolerances really do exist in a big way. I will however take on board all that Michael Mosely says in relation to gut health and change my eating habits as much as possible, although sadly his recommendation to eat more tomatoes, is no good for me.

If you react to potatoes I would definitely look at nightshades. I took out potatoes and tomatoes and didn’t realise there were also spices included. I have since learnt that and now avoid all nightshades. I am now looking into my medications to check those for nightshades too.
Good Luck MissIntolerance

It’s been 9 no this since your last update and I’m sure a lot of people read your posts, as did I. Can you give an update on how you’re doing so we all can benefit from your journey?

Hello GolfJumper – thanks for the prompt.

Nothing has really improved unfortunately. Sometimes I know I’ve eaten or drunk something I shouldn’t have done – and suffered for it. Other times I really can’t work out what has caused the bad reaction. In relation to alcohol, this is quite a problem, but quite recently I had quite a bad reaction to Marmite and realised that it contains ‘brewers yeast’ rather than bakers yeast, so wonder if it’s actually the ‘brewers yeast’ in alcohol which is the specific trigger. Wine is the worst for yeast content, with spirits having less in. This may or may not be helpful to others!

If I’m having a very bad day, I will have a couple of squirts of ‘Sudafed Blocked Nose’ spray. This works well for me in terms of quite a fast and significant improvement in my ability to breath through my nose , but it’s all chemicals, and there are lots of cautions with it about not using it continuously/too often, otherwise it could end up with the opposite effect. There a lot of different nasal sprays available and different ones work for different people, but they all need to be used with caution. I found reading the Amazon reviews very helpful before buying. I’ve also bought several that others recommended that did nothing for me. So it’s very much trial and error with them.

I also use nasal strips at night (Breathe Right Congestion Relief) which help a surprising amount, as lying down is the worse for me. I cut them lengthwise which creates a narrower strip, but it still works just as well, so get double to number out of the box!

I avoid tomatoes all the time, but do sometimes have potatoes. I’m not sure if potatoes add to my problems or not. As I mentioned earlier, sometimes I really can’t pin down the cause of my sudden sneezing fits and streaming/blocked nose. Certainly dairy doesn’t help as I do notice a worse reaction after ice cream in particular.

I’ve also recently noticed a bad reaction after eating bakery products from Morrisons bakery, i.e. cheese scones, scotch pancakes etc. Really odd as you wouldn’t think products like that would have bad things in, but of course they use a lot of preservatives, flavourings, colourings etc. I’m not saying Morrisons use anything different from other supermarkets, it just happens to be the supermarket that I’ve bought them from and reacted badly to.

Going right back to when I was having antibiotics and the concerns around them killing off the good bacteria in the gut, I now take ‘Lactobacillus Acidophilus’ which was recommended to me to help re-balance gut bacteria. No idea if it’s doing any good or not, but reviews were good on Amazon, so I take them!

No magic wands for any of us with intolerances unfortunately, but it’s always good to look for ways to try and improve our situations.

I am doing better, not 100% but I feel like I am managing my diet better. If I avoid gluten, most dairy, sulphites, nightshades and solanine then I can cope day to day. The nightshades were key and can take 2-3 months to really show improvements, so if you’re looking at this food group and think it might be relevant then stick to a nightshade free diet for 3 months. The spices are key to avoid too – I accidentally had a small amount of paprika and felt awful later that day and it lasted for a week. My joints all seized up and it felt like my bones hurt too. I was moody and grumpy and achy for several days.
I have also added a B12 oral soray and ubiquinol which has helped loads. I have an energy deficiency and on the supplements I gained a stone in 3 weeks whilst maintaining the same diet. I think this shows that I wasn’t digesting food and now am. I feel like my body is functioning properly again, which is great:-)
It took a while to get used to this diet, but I can now eat out in some restaurants and know what sorts of foods to avoid completely. I am still eating mainly fresh food but have managed to add a few treats like the occasional coke. A big benefit has been the discovery of Orgran Flour – it is gluten and potato free, so I can now bake cakes that I can safely eat. That has added a new dimension to my foods which has been very satisfying:-)

I have had the same problem where I am sensitive to nearly all food, and turns out I have mast cell activation syndrome, which is an inflammatory allergic condition. Foods that are high in histamine are often a huge trigger, but when levels are high, then it becomes all foods. When it comes to mast cells, unfortunately it is very difficult to heal the gut, as live bacteria is also a trigger, making the sensitivities even worse, so the first thing to do, is calm down the cells, then look at the gut afterwards. If anyone wants more info and lists of doctors who can diagnose this unusual condition, then send me a message and i’m happy to email a list.