Markers of non-coeliac wheat sensitivity in patients with myalgic encephalomyelitis/chronic fatigue syndrome, 2018, Alaedini et al

Just on terminology, I prefer to call my problem wheat sensitivity, not gluten sensitivity, because I have no idea if gluten is important or not.

 

Well, I would even agree - BUT. There are obviously so many people who profit from avoiding certain food because they have trouble when eating it.

I love wheat stuff - but I get diarrhea. I love milk stuff - again, diarrhea. Soy - diarrhea, heartburn, nausea; the same with sugar. Not to mention all that stuff that causes bloating and terrible pain. I don't eat meat due to moral reasons.
It's really a pain in the ass, honestly.

It is interesting to know, for me, if "gluten/wheat sensitivity" is a topic in ME. Because, interestingly, it is in MCAS and other diseases, including autoimmunity. But not everyone with those diseases has this.

It also is interesting to see others have the same issues.

And you are right - the quality of the paper wasn't discussed (edit: it was). I would be interested, but I'm certainly not qualified.

 

I also have strange reactions to things I eat since I got sick but I’m not about to jump on this particular woo wagon which is clearly riding on the back of myth and food fad popularity.

Maybe gluten is the problem but I’m pretty sure this paper doesn’t tell you that for reasons mentioned earlier.

I am particularly interested in why a lot of people who say they are sensitive to wheat are also apparently sensitive to other things? This doesn’t sound like a specific wheat thing to me. So why are these researchers taking us down this apparent blind alley with their sloppy conclusions and incomplete studies.?

Just reminding folks that just because it says science on the can and appears to promise stuff doesn’t mean that it isn’t garbage inside. I didn’t see much assessment and scrutiny here so thought I would get the ball rolling as I would for any other paper?

If we don’t scrutinise with rigor and just ambiently post papers with a few anecdotal comments that endorse it without critiquing it ...a casual reader could get the wrong impression?

 

One of my worst reactions to food appeared to be due to gluten free chocolate cookies. Generally it's the cheap highly processed industrial food that is the most dangerous. I think that the problem might be additives. Or maybe the mast cell theory is correct and histamine is what matters.

 

I think there may be something behind histamine ...not sure about additives or processed food ...I think these are generalisations much popularised by the food demonising press .... cheese is a processed food and so is wine, bacon and chocolate ...all high “histamine’ foods but I’m not sure people think of them as processed since the process is “traditional”. They have additives (mainly salt and nitrates/nitrites, soya lecithin and vanilla extract) but these seem to be permissible additives?

I think histamine in food may be another blind alley although possibly interesting in the body?

I’m interested in why PWME may be less efficient at regulating it in the body.

To be anecdotal for a minute, I take an anti histamine tablet every day since I have become extremely allergic to animals since I got ill. Today was an horrendous pollen count and despite the antihistamine I have been wheezy, itchy nose, eyes and skin (crawling skin). Why is this I wonder? It seems to a similar story amongst many of us, whether animals, pollen, food sensitivities...dare I say it ...MOULD!!!

I honestly think gluten is a blind alley and we need to be looking at something more general. If a study of quality shows gluten is responsible then of course that is interesting. I just have never seen such a study that is compelling. This one definitely does not change things from my perspective but I’m always hopeful that someone will eventually find a sensible mechanism (as oppose to the populist easy money ‘answer’)

 

I would be interested if there is a connection between mast cells and ME, or better, if and which role mast cells play in ME. In the end, mast cells are a part of the immune system, too, so intuitively I don't see why there shouldn't be a link to ME. Does someone know how it is in HIV/Aids/other immune deficiencies?

It's not only histamine rich food, it's also food that can liberate histamine in the body, and it's not only about histamine alone.

I only know that it doesn't seem to be uncommon to find gluten sensitivity in people with mast cell disorders.

Please note I am not saying MCAS = ME or so. I'm just wondering if mast cells might be a part in ME.

 

Was this your impression, that this article stated gluten sensitivity as a cause?

 

I don’t think this paper talks about a cause for ME ...just that they are saying that the tiredness and unrefreshing sleep symptoms in PWME are due to a gluten sensitivity

Personally I don’t think it’s a great hypothesis or that they proved it

Edited for clarity

 

If you think you have a specific wheat problem rather than gluten sensitivity, you may be able to cope with spelt, a particularly ancient form of wheat, or with rye flour. They both contain some gluten, but people that have wheat rather than gluten problems are OK with them.

 

There was something in the news recently about gluten sensitivity. They are wondering if possibly it is actually a histamine issue, rather than a gluten problem. I can't remember now where I saw this and can't find it on Google.