Do your ME symptoms improve when you exclude wheat/gluten?

[Mij]

I voted no difference but completely cutting out sugar for 2 months made a difference, my joints and muscles are no longer stiff and sore.

 

[Timaca]

I have multiple food intolerances....gluten included. But also every other grain I've tried, except rice. I'm off the top 10 food allergens except for soy and fresh fish. (Meaning, I don't eat wheat (or gluten containing foods), dairy, eggs, shellfish, corn, seeds, tree nuts, peanuts). Animal protein (except for really fresh fish) gives me headaches so I avoid that as well. (I *think* that is histamine related).

Here's what happens to me when I eat wheat.

Now, I know I still get viruses reactivating that give me problems. For example, this past week HSV1 reactivated. Yesterday I didn't even feel like leaving the house....today I got the outbreak on my lip. In September, my neck got very stiff and painful...and I didn't feel like leaving the house....that was likely Coxsackie B4 (we know that one gives me problems too)....no outbreak on the lip....HSV1 doesn't give me the stiff neck....

Anyway, foods are a problem for me....but only became so after I got CFS. And I only discovered it was a problem about 4 years ago....I've been ill for 13 (long) years....

Best,

 

[place]

I'm identical as Andypandy, except for the chocolate. I will never test it out because I don't want to know. I start my day with chocolate, not even kidding.

 

[arewenearlythereyet]

Hi. I don't avoid gluten per se but operate a reduced sugar and starch diet. Gluten is the protein in wheat so I think it often is surrounded with confusion with carbs and starch in particular.

Since the main benefit of going gluten free is also a significant reduction in refined starch (coz most of us eat a lot of it) this is fairly understandable. If a lot of pwcfs have gut flora problems (as a lot of us do) then cutting down the starch would have a big effect (similar to sugar). I'm a food scientist by profession and often see the gluten and starch confusion in my line of work.

Most gluten free foods offered by the supermarkets are effectively substituting wheat flour with cornflour or potato starch so I'm not sure that these are going to be really effective unless you have a genuine wheat intolerance. I suspect the bloated feeling for a lot of us comes from fermentation of the starch by microbes rather than from gut wall sensitivity to gluten. The scratch test brigade have made a lot of money suggesting food allergies where they don't exist in the past so I am extremely sceptical about the genuine levels of wheat intolerance in the population in general (as oppose to feeling bloated from eating too much starch generally). Every bit of consumer research I have seen on food allergies in the general Uk population shows that if you exclude the genuine medically diagnosed (coeliac nut allergy etc), 99% of those cited are self diagnosed. I think it may be different for pwcfs but I remain sceptical.

Having said this I think the reduced refined carb and sugar has a definite benefit for all of us. I did a little experiment where I reduced all carbs down to under 60g per day and after a period of adjustment (say no more) I did feel a lot better. I managed to creep this back up to 120-150g after 2 months on the 60g regime and still benefitted (more energy after a meal, less bloating and reflux, lost weight). I've recently fallen off the wagon and this has crept up to 200g per day over 3-4 weeks and I feel awful (bloating, reflux, heartburn, lack of energy etc). I will definitely keep to my 150g rule which effectively rules out bread unless it is a managed treat. Still allows me d ribose in my coffee, dark chocolate the odd yoghurt and a roast potato with my Sunday lunch so not all bad. Just my experience but seems to work for me.

 

[SuzieSam]

I went grain free and sugar free in September. Feel even worse. What a swizz.

I was living on cheese rolls, Coke and toast, and not putting any energy into food prep. I thought I'd HAVE to improve with an overhaul in diet. Without the bread, I was forced to eat more veggies and healthier protein, carbs and fats.

Dunno what I've done wrong. It's kind of paleo - with dairy. Can't face doing an exclusion diet or low fodmap or whatever. I've no overt gut symptoms to indicate if a food is wrong for me. Cut out dairy? Cut out nightshades? Cut out nuts?

How do you know where to start? :thumbdown:

 

[arewenearlythereyet]

Hi @SuzieSam . It is really difficult when there are so many unsubstantiated opinions out there and so many so called "superfoods". My rule of thumb is that any diet or scheme that suggests you move away from what your body is designed to do (I.e be an ominivore) should be treated with a little caution. The paleo movement can be a little "religious" in their teaching precluding dairy etc. So I am wary of this also (our metabolism is a lot older than the paleo so this is fundamentally flawed imho). That being said it seems to work for some people. My diet was poor where I had an overreliance on bread pasta and potatoes and was low in animal protein. It makes sense to manage carbs and replace with vegetables where possible (I substitute bread for spinach in a loaded salad which gives me some extra nutrients). Make sure you keep an eye on your protein for tryptophan and other essential amino acids. Beans are great if you are veggie but it is far more difficult to get the right balance on beans alone.

The "fat causes you to be fat" myth has also well and truly been blown wide open, so we all need to recondition ourselves to a bit more fat in our diet (ideally as cold oil). I use a lot of mayonnaise now and eat more seeds and nuts than I used to. Nuts and seeds are great for micronutrients (particularly vitamin e, magnesium etc.) but watch your portion size (25g servings). Nuts are great for staving off hunger too. I also eat a lot of eggs for the choline.

This is all a bit much I know. I suggest you start slowly and change 1 or 2 things at a time. Moderating carbs might be a good start and eating more fresh vegetables? I have also found that spreading my calories over the three meals and getting 2 snacks in has helped so it's not all or nothing at the evening meal.

 

[SuzieSam]

My rule of thumb is that any diet or scheme that suggests you move away from what your body is designed to do (I.e be an ominivore) should be treated with a little caution. The paleo movement can be a little "religious" in their teaching precluding dairy etc

I'm inclined to agree - but all these annoyingly healthy vegetarians and vegans trumpeting the virtues of their lifestyles swayed me, and I was a vegetarian-trying-to-be-vegan for 6 years. Till March this year.

I really tried, despite the ME, but I was so ill I gave in to my husband's pleas, and I now enjoy chicken and fish, eggs and cheese. It was such a relief to feed my body this "forbidden" food!

But absolutely no improvement.

The "fat causes you to be fat" myth has also well and truly been blown wide open, so we all need to recondition ourselves to a bit more fat in our diet (ideally as cold oil)

THIS IS THE MOST WONDERFUL THING EVER! When I think how many years I wasted trying to stick to a low fat, low carb, low calorie diet! Oh the misery! The hunger!

How bizarre! I eat butter, cheese and nuts and drink full fat milk. Whatever I want. But I've lost weight! Giving up grains and sugar, and eating very few potatoes is a teeny weeny price to pay for this freedom.

Nuts and seeds are great for micronutrients (particularly vitamin e, magnesium etc.) but watch your portion size (25g servings).

I'm a coconut addict. Oil, butter, flakes. Might be a problem. But it's not officially a nut, and meant to be low allergenic. I try to rotate my other nuts so as not to get over exposed

Sorry. Can't help the irreverence.

 

[arewenearlythereyet]

hmm yes rotating nuts can be problematic My preferred ones are walnuts almonds and pumpkin seeds. I can't say that anything diet wise has really transformed my condition other than the carb control and this only is making me more comfortable as oppose to anything substantial energy wise. The virtuous self rituous thing makes me a little ashamed so I try and keep it to 5 mins a day lest I get unexplained bruising appear.

 

[taniaaust1]

I went grain free and sugar free in September. Feel even worse. What a swizz.

I was living on cheese rolls, Coke and toast, and not putting any energy into food prep. I thought I'd HAVE to improve with an overhaul in diet. Without the bread, I was forced to eat more veggies and healthier protein, carbs and fats.

Dunno what I've done wrong. It's kind of paleo - with dairy. Can't face doing an exclusion diet or low fodmap or whatever. I've no overt gut symptoms to indicate if a food is wrong for me. Cut out dairy? Cut out nightshades? Cut out nuts?

How do you know where to start? :thumbdown:

sorry to hear that. It took me years to figure out that I had food issues and what they were. In my case out of the 4 different types of food issues I have, only one affected my gut giving me GERD.

I had dairy giving me headaches, gluten giving me more fatigue, intollerences to certain things I was eating which I didn't know I had eg an issue with peanuts, cashews, artificial sweeteners and coffee, an issue with sulphurs (so issue with too much broccoli and to much egg) and an insulin issue on top causing even a standard diabetic diet to not be okay for me as I seem to need even lower carbs to stop insulin spikes giving me symptoms

 

[arewenearlythereyet]

sorry to hear that. It took me years to figure out that I had food issues and what they were. In my case out of the 4 different types of food issues I have, only one affected my gut giving me GERD.

I had dairy giving me headaches, gluten giving me more fatigue, intollerences to certain things I was eating which I didn't know I had eg an issue with peanuts, cashews, artificial sweeteners and coffee, an issue with sulphurs (so issue with too much broccoli and to much egg) and an insulin issue on top causing even a standard diabetic diet to not be okay for me as I seem to need even lower carbs to stop insulin spikes giving me symptoms

Sounds like a right pickle ...so what do you eat? Sounds like you have excluded some major food groups that may cause you further deficiency problems later ...I suppose there are always supplements? How did you work out what was causing your GERD with so many variables?

 

[SuzieSam]

@taniaaust1 I hope that all these horrible symptoms led you to eating a diet that helps at least? Has your GERD improved? I had seriously bad GERD a few years ago, but it got better without me doing much, besides not eating much.

I've continued eating low carb, higher fat because it's easy for my idiot brain to handle. Don't know if it's addling me further, although it's trumped by certain neurologist as a brain-protective regime. It's supposed to be very good for stabilising blood sugar. Have you tried it?

 

[Lolo]

When I stopped gluten the fast transit time thing stopped, which is a big relief - less anxiety when going out. I tested negative for celiac. Also can't do brown rice for the same reason maybe cross reaction , white rice is ok, and don't eat oats. This was a problem for a long time and I am wondering whether it was a contributing factor with developing ME.

It seems my brain fog improved after stopping gluten - a few year ago now but I also take fish oil which helps that. Eating meat again helped, dairy, sugar and processed foods make me feel worse.

I am wondering if this problem people have with wheat has anything to do with the folic acid that is added which is the form recommended to avoid for people doing the methylation protocol.

I also don't eat the nightshades as they cause stiffness and achy body. Again potatoes and tomatoes being high in folate and maybe not being converted to the methyl form.

But maybe I am not understanding the methyl process correctly.

 

[L'engle]

I am wondering if this problem people have with wheat has anything to do with the folic acid that is added which is the form recommended to avoid for people doing the methylation protocol.

I've wondered this too.

 

[arewenearlythereyet]

When I stopped gluten the fast transit time thing stopped, which is a big relief - less anxiety when going out. I tested negative for celiac. Also can't do brown rice for the same reason maybe cross reaction , white rice is ok, and don't eat oats. This was a problem for a long time and I am wondering whether it was a contributing factor with developing ME.

It seems my brain fog improved after stopping gluten - a few year ago now but I also take fish oil which helps that. Eating meat again helped, dairy, sugar and processed foods make me feel worse.

I am wondering if this problem people have with wheat has anything to do with the folic acid that is added which is the form recommended to avoid for people doing the methylation protocol.

I also don't eat the nightshades as they cause stiffness and achy body. Again potatoes and tomatoes being high in folate and maybe not being converted to the methyl form.

But maybe I am not understanding the methyl process correctly.

Hi. @Lolo When you say you stopped gluten, did you also reduce carbs generally? It's possible it's refined starch that might be the problem rather than gluten itself. Just interested since my symptoms improved with less carbs generally ( reduced eating potatoes and bread pasta). Bloating and gas type symptoms are more logically associated with starch being fermented by microflora in the gut. The brown vs white rice is strange, how do you do on other higher fibre grains like bulgur wheat or quinoa or lentils? These are high in fibre. It might be that your reaction to brown rice was a temporary reaction to introducing higher fibre and might have been a timing thing? Just putting ideas out there, you may have already a fibre diet or worked all this out. Just interested.

Regarding folate in foods, yes I have read this also for methylation, but this appears to be quite controversial between members? I get why some people don't properly utilise it unless they take it in the methyl form but not why just having it under-utilised in your diet would be a bad thing? Avoiding things like spinach as seems to be recommended would also then avoid the beneficial magnesium and other key vitamins and minerals that's in it potentially making things worse or making one rely on an ever larger amount of supplements? I eat a lot of folate containing foods but seem to only be able to process methyl properly and haven't noticed an effect from these foods so I'm sceptical as to this part of the theory.

I'm also aware of a lot of quacks and pseudo science in the area of "special exclusion diets". So it's difficult to know what to believe. I used to listen to this woman on tv here (Gillian mckeith) who used to spout a lot of stuff that just was plain wrong. The annoying thing is that it was also mixed up with useful information. Like she had read a textbook but skimmed through a few chapters and not got the basics on key areas.

I'm still sticking to rebalancing diet (rather than exclusion) using the logic that if gut flora is imbalanced it may be that it's partly due to imbalanced diet (too many carbs and not enough essential amino acids from meat/too low protein). Seems to be working so far.

I am also debating with myself about whether to acidity my stomach before a meal to help get more nutrients out of food (lime juice with tonic water might make it feel like an aperitif ?) but this is probably something for another thread.

 

[rosamary]

Interesting topic. This is worth reading:

http://www.foodreactions.co.uk/intolerance/carbohydrate/index.html

I am definitely healthier on a low or no carb diet.

I am an IBD sufferer btw. But symptoms are very similar to ME when it flares up.

 

[arewenearlythereyet]

Interesting topic. This is worth reading:

http://www.foodreactions.co.uk/intolerance/carbohydrate/index.html

I am definitely healthier on a low or no carb diet.

I am an IBD sufferer btw. But symptoms are very similar to ME when it flares up.

That is interesting ....so as well as low stomach acidity some could also have digestive enzyme mutations? Then if you choose to relieve symptoms with a PPI like omeprazole you could make things a lot worse....carb free is hard I tried 60g and it was awful. My diabetic friend went even lower. I overdid it today and had a portion of chips with my lunch and then scoffed 4 shortbread biscuits (well it's nearly Christmas). It's all this talk of carbs....feel absolutely rotten now. and a bit stupid

 

[rosamary]

Bread acts like a wind-machine on me! But I can't decide if it's the yeast or not. Certainly, sweet corn and fizzy white wine (which I think has yeast) is guaranteed to make me projectile vomit.

Anyway, everything is much more calm on a low or no carbohydrate diet. Including myalgia etc.

It's certainly worth experimenting re food to see if anything causes problems.

However, I do take immunosuppresors. But that keeps the really bad stuff at bay.

Bread STILL causes problems with or without the drugs.

 

[arewenearlythereyet]

It certainly feels like starch is my problem. I just avoid bread since it has a lot of starch in it. A small roast potato is a much smaller portion size so is easier to manage. Pasta is also difficult, I tend to eat a lot of it when I do and it's difficult to reduce portion Size. I hope you manage the symptoms @Rosemary sounds like they are difficult and much worse than mine ( I tend to want to just curl up in a ball and wait for the pain to go away)

 

[Lolo]

@arewenearlythereyet
I was eating a wholegrain diet, not refined, with lots of veg. I stopped the grains in 2011. I did the paleo immune diet in 2014 b/c of arthritis and stiffness and introduced things back gradually. It was very low carb, I felt better when I increased the carbs aka Perfect Health Diet and I use tapioca starch for resistant starch. White rice is ok brown not so. White rice is the only grain I eat.

I had a slight reaction when introducing nightshades back in so stopped that for awhile longer but when I retested I was ok. But a few months ago I had lots of cherry tomatoes growing so ate a lot of them plus potatoes b/c they are quick and easy to cook and the stiffness came back so I have stopped them again.

I have started the methyl protocol b/c many here have benefited, don't know until I try. Yeah I understand what you are saying about the spinach, many foods with folate are high in vitamins & minerals and especially potassium which is very important for the protocol.

I read about different diets and different authors in the hope that I learn something useful from each especially if it is repeated and use what makes sense to me. Also check PR to read of others experiences or opinions.

@Rosemary
"Bread acts like a wind-machine on me!" When I made my own bread years ago I had this problem - very gassy and bloated but not with bought bread.

 

[Bedshaped]

Gluten free on my third year now. It makes a huge difference on my stomach/acid/headache and cognitive function. Also I stay away from anything with onions and garlic, those make me really sick. Also pepper and some salad leaves makes me worse. Takes 48-72 hrs to recover after eating onions, garlic, pepper, certain salads and herbs.