Has a gluten free diet helped your symptoms in any way?

[Ysabelle-S]

Since some people with ME, including myself, have seen some sort of symptom improvement after eliminating gluten/wheat from our diets, it's worth starting a thread here on this subject for those who want to post on this topic. Clearly, giving up gluten does not help many ME patients, but as one whose daily stomach problems went away quite dramatically, I think it's worth considering if you have gut issues. Giving up gluten may also have cleared up my regular two or three times a year cystitis problems.

I should add that I have not had a test for coeliac, and my doctor didn't suggest me being tested when I mentioned that giving up gluten had made a difference.

I've been on a gluten free diet for about three years, if I remember correctly, though I'm actually avoiding all grains for the most part now. But that's more recent.

Although the stomach issues were the most dramatic improvement, I do think it might have helped with other symptoms in the longer term. I was losing fluids daily through diarrhoea while not taking salt in my food for decades, and hardly drinking at all, all of which was probably not doing me any favours.

 

[Wonko]

I've done paleo, which is gluten free, strict only for 3-4 months, I think, then it was "mainly" paleo. If anything I got worse, I suspect from the amount of resources I needed to use to obtain and prepare food being vastly more than I would normally use.

 

[Ysabelle-S]

I've done paleo, which is gluten free, strict only for 3-4 months, I think, then it was "mainly" paleo. If anything I got worse, I suspect from the amount of resources I needed to use to obtain and prepare food being vastly more than I would normally use.

I'm close to the diet you're talking about, and I found it helpful, but not as dramatically useful as the gluten free diet since that had already sorted out the gut problem. I seem to have lost weight though on the current diet. I eat a lot of salads, and fewer big plates full of brown rice and whatever on top. Also just don't eat much in the way of processed foods anymore.

 

[arewenearlythereyet]

I did a ketogenic diet for around 8 weeks which effectively removed gluten, but I ended up worse (energy wise). I got control of my IBS symptoms (which was a constant daily issue) by reducing the amount of carbs and sugar. That can be wheat or potato or corn etc but I keep it under 150g per day total carbs ( moderate protein and the rest fat).

Seems to have worked for me. (Symptoms will probably come back tomorrow now I've said that)

 

[Ysabelle-S]

I'm just going to add a link to the ME Association on this subject.

In an article titled: Why our July ‘Quick Survey’ focuses on Coeliac Disease testing | 2 July 2015 the MEA asked a question on this subject some time ago, giving the following concerns:

Firstly, it relates to my concern about people with ME/CFS who are putting themselves on a gluten-free diet without first checking to see if they could have adult onset coeliac disease.

Some people with ME/CFS report that their symptoms improve on a gluten-free diet, especially if they have irritable bowel type symptoms.

However, in some cases this is because they are actually treating unrecognised/undiagnosed coeliac disease – where there is very significant gluten sensitivity.

Secondly, it relates to people with irritable bowel syndrome (or IBS-type symptoms) plus fatigue, who are being diagnosed as having ME/CFS without first being tested for coeliac disease (along with other possible causes of these symptoms)

Coeliac disease has a number of symptoms that overlap with ME/CFS and must be therefore be considered and excluded in anyone who has irritable bowel symptoms and fatigue.

http://www.meassociation.org.uk/201...cuses-on-coeliac-disease-testing-2-july-2015/

As I said above, my GP didn't suggest a test when I reported that giving up gluten had helped my symptoms.

 

[Ysabelle-S]

I did a ketogenic diet for around 8 weeks which effectively removed gluten, but I ended up worse (energy wise). I got control of my IBS symptoms (which was a constant daily issue) by reducing the amount of carbs and sugar. That can be wheat or potato or corn etc but I keep it under 150g per day total carbs ( moderate protein and the rest fat).

Seems to have worked for me. (Symptoms will probably come back tomorrow now I've said that)

I think sugar makes my throat issues worse. My persistent cough gets worse when I eat sugar foods, and when I'm away from them and on the likes of salads and plainer food, home cooked, my throat seems to improve.

The ketogenic diet is a hard one. I'm a pescatarian so I tried it and found it a bit limited.

 

[Wonko]

Amongst other things Paleo doesn't allow grains, any grains, so it's automatically gluten free. Rice is a prohibited food, as is all processed food (by which I mean industrially processed), basically if it wasn't walking around or blowing in the breeze......lol

Do I recommend it for pwME? No, it's too much work and a lot of the restrictions make no sense other than at a global population level. It is worth nicking the odd recipe tho, as some of it's both healthy and tastes good, much like some vegetarian cooking, add a tiny bit of meat and your golden lol.

Would I recommend going gluten free to pwME? As a general thing no, not unless there is a reason.

 

[Wonko]

I think sugar makes my throat issues worse. My persistent cough gets worse when I eat sugar foods, and when I'm away from them and on the likes of salads and plainer food, home cooked, my throat seems to improve.

The ketogenic diet is a hard one. I'm a pescatarian so I tried it and found it a bit limited.

Mine appears to be peanuts, eat peanuts, start coughing, well....cough more and more seriously, a pattern I've only noticed recently.

 

[Ysabelle-S]

@Wonko

The only reason I tried it was because of the gut issues, which it cleared up dramatically. I think I'd tweeted some research on ME and gluten and then decided to try it out just to see if it stopped a very annoying problem. I'm glad I came off it though because I no longer eat sandwiches and rubbish. It's almost all fresh food now.

 

[Ysabelle-S]

Mine appears to be peanuts, eat peanuts, start coughing, well....cough more and more seriously, a pattern I've only noticed recently.

I've had this cough since 1994. The back of my throat is red. I think it's the ME. But I don't see other patients talking about coughs, though I have seen photos showing others having redness at the back of the throat.

 

[Wonko]

I've had this cough since 1994. The back of my throat is red. I think it's the ME. But I don't see other patients talking about coughs, though I have seen photos showing others having redness at the back of the throat.

I've had a constant cough predating the onset of ME, since I was a child, it's never entirely gone away, sometimes it's been bad enough so I've pass out through lack of opportunity to breathe, tho not for a few years now. I had a lot of opportunity to study my own brains particular reboot sequence

I suspect that many with a years long constant cough don't even think about it any more, it's not a symptom, just part of them. It's certainly not a symptom I mention, or even think of, unless my attention is called to it. When I was younger it used to bug the hell out people, but now I live alone and don't go out much, it bothers no one, including me

 

[Ysabelle-S]

I've made a thread for anyone with throat issues or coughs:

https://www.s4me.info/index.php?threads/do-you-have-throat-problems.254/#post-4005

 

[erin]

I've been gluten free diet on and off in the past but now I've been eating gluten free for 9 moths. My GI symptoms are much better.
I had a Coeliac biopsy and it was negative. The gastro specialist told me to go back to gluten and I did for a week 3 months ago. It was a disaster. I was very sick, I immediately abandoned gluten again. My cousin who is a doctor insists that it is difficult to diagnose Coeliac, it is quite possible that one biopsy is not enough to reveal the damage in the small intestine.

I also react to dairy very badly last 5 months.
I was down to 6 foods at some point, now I'm a bit better. I eat carbs, lots of rice, potatoes, I also bake gluten free cakes, pastries. I've lost a stone from April to September. I was not over weight so I become slightly under weight. But I managed to put 2 Kg.s since September which is a relief. I feel better, more energetic now.

Another thing I noticed that going gluten free helped reducing anti TPO's (Hashimoto's). I'm due to my THS and T3, T4 tests. I hope I can reduce that horrid thyroid medicine.

 

[Graham]

Both my son and I have tried various exclusion diets over the many years, but nothing has been effective. We do eat healthily, in the general sense. Giving up chocolate was probably the most heart-breaking (don't get the wrong idea though - we only eat a square of the really dark chocolate each mid-afternoon).

But then, I haven't been able to eat even the tiniest trace of onion following an operation when I was 22. Some specialists down in Eastbourne many years later suggested it could have knocked out an enzyme. My take on the diet aspect is that we are all different and there may be some foods that we can handle less well than others, but when we are healthy, we can easily cope with any minor imbalances. When we have ME, we struggle with any minor problems, so perhaps these dietary imbalances become more difficult to handle. In other words, diet has little to do with the ME, but we need to find out how to give our bodies the easiest life.

 

[Arnie Pye]

I've been tested for coeliac disease and it came back negative. Several years later I decided to try a gluten-free diet anyway and found it very helpful, so I've stuck with it. I get less pain from my gut, my balance improved, and so did my temper. I've been gluten-free for nearly three years now.

 

[fds]

I have experimented with eliminating various things in my diet and my big culprit was lactose. I still have digestive issues so I don't know if there are other more minor intolerances. I have a list of things that I know make my digestion worse so I avoid those but I suspect that it's an individual thing for me. I didn't find that going gluten free had much effect at all but I do tend to already limit how much wheat I eat especially bran which is terrible. Maybe I can tolerate a certain amount? This experimenting has been going on over many years and I continue to experiment. At the moment it seems that getting overtired is my biggest trigger.