Hi. I'm new on here. I have ME and IBS. I recently had blood tests with Yorktest Laboratories and found that I was intolerant to eggs, gluten,wheat, dairy and yeast. I cut out all food and drink containing these plus a diet low in FODMAPS which was was really difficult. After 10 days I started to feel reallly unwell and I'm waiting to speak to my GP and a Nutritionist.
I feel that changing my diet so drastically has been detrimental to my health. I now feel too unwell and exhausted to cook from scratch so I'm now thinking of abandoning the strict diet.
Has anybody else got ME and IBS and had similar experiences? What do you think is the best way to discover what is causing your IBS?
Thanks.
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Frankie64
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I don't have ME but I found purchasing a cheap phone ap to keep track of symptoms and foods really helpful to track down my major triggers. It took a long time, with a lot of experimentation and cooking most of my own food. It's hard, just because you can eat something one day, doesn't mean you can the next. Good luck.
Could you please tell me what phone app you used? I tried printing off some sheets and writing down everything I ate and any symptoms I got but found it not only too difficult to keep up but too difficult to work out which foods caused me problems due to not knowing how long after eating them the symptoms might appear!
I don't have ME but after following g a very strict elimination diet that cut out gluten sugar caffeine grains alcohol and dairy I was totallY Exhausted. When I started introducing some foods back in I gradually improved in general health. I followed the gut makeover diet and although it did help my symptoms for ibs it didn't cure me. I take bio kult now and that along with a plant based diet has improved the ibs significantly and my energy levels are back to normal.
The strict elimination diets really do leave you exhausted and maybe try eliminating one thing at a time especially as you already have ME?
I am following the Diet recommended after the York test. I have sudden onset of severe IBS but am otherwise healthy. I ignored the low fodmap diet as it had not improved my problem. 8 weeks in and my symptons have reduced by 80% which has surprised me as I was sceptical but desperate and up to last week would have said I was wasting my time However it hasn't been too difficult as I can eat meat and fish and veg and fruit and porridge for breakfast so not too different from my usual diet as I have never used ready meals etc. Most restaurants are used to dealing with wheat intolerance. I do hope you feel better soon and can enjoy Xmas fare if not the mincepies
It is a shock to your system and your gut bacteria when you change diet, so better to wean off gradually over a couple of weeks to give your body time to adjust. Gluten is a very common intolerance and cutting it out may well help your ME. Make sure you eat lots of other vegetable fibres as we get a lot of our dietary fibre from wheat and it's essential for gut health. Withdrawal symptoms should settle down after a week or so.
Food sensitivity testing is not very accurate but gluten is such a common sensitivity causing a host of health issues it's worth cutting that one first to see if your symptoms improve. Apparently it can be a few months before it's completely out of your system.
I suffer with colitis, had food testing done like you and mine came back with allergies to the same foods as you, I cut out wheat which made a big difference, and the other foods I eat in moderation. Also find corn is not good for me also, it is just a case of finding out which foods trigger the problems the most. Try cutting out one thing at a time and keep a food diary. Best of luck
Please ignore the York test results. They test for igG antibodies and all this will do is tell you what foods you have been eating recently. Sometimes (by chance) you will hit upon something you are intolerant to which is why some people feel better. If you did the test again in two different days you would get different results. Sorry to be the bearer of bad news but if it makes you feel better, I also wasted my money on a York test before I knew the above!!
If you want to try a low fodmap diet (which has really helped with my ibs) you could try to get help of a dietician which is the recommended route but can have long waiting times and you may then find that you get v poor advice from a dietician that doesn't know much about the diet. Not always though, so may be worth trying to see who you get.
If you are good at research yourself (this is the way I did it) have a reward on the internet, particularly the Monash University website (they are the pioneers of the diet). Get the Monash app which helps you learn what foods you can and can't eat. Some people also use an app called Food Maestro made by Kings Hospital - you can scan UK food stuffs to see if they are low fodmap or not. Also join two facebook groups for questions and advice - Fodmap UK and Easy on the tummy.
Expect to do a lot of research and menu planning in the first few weeks and to get some things wrong as the diet is really complicated but you will get the hang of it. You can generally just adapt your normal recipes and once you have a store of recipes you are pretty much good to go!
It is not designed as a permanent diet, you need to start reintroducing foods as soon as symptoms calm down. This is usually between 2 and 8 weeks. One of the reasons for this is that for good gut flora you need to eat as many different foods as possible and being on a restrictive diet long term can worsen ibs and lead to lots if other health problems. Research is ongoing but poor gut flora has been linked to a number of diseases including auto-immune diseases and Parkinson's. With this is mind it is probably a good idea to take a good probiotic and when symptoms have subsided try adding in some fermented foods and raw milk products.
I had to cut all foods out and start from stratch using the fodmap diet.... And slowly introduce it back and it seems to work although I do avoid spices at all costs... Just have to limit yourself on what you eat and as long your healthy it should all be ok 😊
Did it help your IBS to cut out eggs, gluten, wheat, dairy and yeast? If it didn't help at all, and made you feel unwell in other ways then scrap that.
I can't say I completely know what is causing my IBS. All I can do is find ways to manage it, and keep my body as fit and strong as possible at the same time. So I refuse to cut out anything that my body says it's OK with, no matter what it is, even chocolate. If it sits well in my gut I will eat/drink it.
If it's a 'healthy' food but my gut hates it, I don't eat it (or rather I will keep trying a little bit after some time has passed.) My intolerances are often to healthy fibre-rich foods, but not all of them, so I found my own way. Otherwise, not lactose, gluten, yeast, sugar etc intolerant as far as I can make out from my body feedback.
I would think that it's essential to take some vitamin and mineral supplements while your diet is restricted. You could have malnutrition right now. Also, is there any kind of meal or food delivery service that you could use which doesn't cost too much while you are so weak and can't cook properly?
I thought I also had ME a few years ago, which came on suddenly, but I am pretty sure now that was all about the IBS. I have definitely improved greatly over the last few months, so there's hope.
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