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

http://gut.bmj.com/content/early/2018/03/17/gutjnl-2018-316133

Uses data generated from this study

http://gut.bmj.com/content/65/12/1930

 

Many thanks, @Andy. I reckon I've had this for a long time. I wish I knew what else I was reacting to - maybe it's the supposed gluten-free wheat bread!

 

I've finally figured out I get the same reaction to soya, which is in quite a few gluten-free products, including some breads.

(btw, I have the elevated SDC14 mentioned in the paper)

 

I suspect that I may be sensitive to soya too. But I can't think of any/many other vegan gluten-free, low-sugar things to put on toast for breakfast! (I have tofu)

 

I hear you. I've tried to go fully veggie a couple of times, but being gluten, soya and meat free is a huge challenge. Doesn't leave that much.

 

Nice to hear that not everybody is on the paleo / keto / bonebroth hype.
100% vegan here.

Also tried gluten free / soy free / sugar free / low fat for about 6 months.
Think Dr. Mac Dougall diet but without gluten.
I tried this after having an IGG food sensitivity test.

Did not make a difference in energy levels, symptoms or sleep for me.
Lost quite a bit of weight on it though.

I agree. And IGG food testing is of course questionable.

So slowly reintroduced gluten and soy containing products.
Glutenfree, soyfree, sugarfree vegan is too restrictive for me.
Eating nice meals is one of the very few remaining joys in life..

But no more meat or dairy. Not willing to try it either after 25 years.

 

@Trish

Have you tried this one? http://www.fria.se/en/glutenfree/gluten-free-bread/

I find it very tasty. I usually have the Fria Grova.

For rolls I have Schar ones.

I used to have bread with buckwheat flour in it but I seem to react to that now.

I haven't yet tried this brand: https://www.artisanbread-abo.com/

 

Sadly, veganism made me worse. I know some people who do great on it, and others get very worn out and weak from it. I require animal fat at the very least, I've learned.

Some people think non-coeliac gluten intolerance might actually be related to fructan: https://www.sciencealert.com/non-coeliac-gluten-sensitivity-caused-by-fodmap-carbohydrate-fructans

I certainly get lots of IBS problems. The NHS suggested the FODMAP diet, which I thought was too restrictive and too drawn out, so I found an actual hair test for intolerances instead. Much quicker, and it was on offer!

 

A restricted elimination diet takes so long to evaluate everything. I spent well over a year and identified problems with gluten, caffeine and I think alchol, which I now avoid. However I did not get onto looking at many food stuffs such as soya, chocolate which is for me an IBS trigger or various sugars. Eliminating gluten and caffeine has reduced but not completely eliminated my migraines and my IBS.

One issue with food intolerances I feel I have not managed to address at all because it is potentially so complex to monitor, is that one food stuff may trigger an intolerance manifest by changes in gut permeability, but a completely different food stuff getting into the blood as a consequence triggers the symptoms we are more subjectively aware of.

I am also interested in the link between food intolerances and 'addictions'. When doing a detox or when eliminating gluten, the side effects seem to me similar to withdrawal symptoms: migraines, vomiting, etc, though they also overlap with the ME symptoms. Also I get quite strong sugar cravings, though this is probably compounded by not being able to eat often enough to maintain stable blood sugar levels.

More recently I have had not had the energy to look at these issues, especially as I was dependent for quite a while on friends and neighbours buying and preparing food. At least now I am generally able to do online grocer shopping, but am over reliant on ready meals, which are potentially problematic, though I also now have more help with preparing meals from scratch and freezing them. So at present just eating twice a day is my goal without worrying too much what I eat. It is also a continual balancing act, I am trying to work towards eating smaller meals more often, but also balancing that against the other life essentials and eating healthily.

 

Short article on this from the Bateman Horne Center.

https://batemanhornecenter.org/progress-cfs-subset-identification/

 

I've just seen this thread again. I saw my GP yesterday about a flare up in gut issues and completely forgot to mention my gluten sensitivity and this research when it was one of the things I wanted to raise. And there I was sitting there at my appointment thinking how well my foggy brain was doing and how my notes were working out. I could punch something.

 

I am gluten, soy, meat and most of the time dairy free. And yes - it's hard. But I have so much less problems it's worth it. And there are nice alternatives. (By the way, I have problems with too much protein, fat and carbohydrates, too. So that leaves out a high-fat, low-carb or whatever diet.)

Interesting paper @Andy, thanks for posting it!

 

I don't have celiac, but gluten makes my joints hurt, so that's a good incentive for me to avoid it for the most part. I tolerated it just fine for much of my life, though. I've also found that I've developed a dairy intolerance in recent years although I can sometimes have certain things like Parmesan or goat milk yogurt.

I had given up beer when I realized I had the gluten problem, but recently made a happy discovery. A company called Omission removes gluten from their beer. If I had celiac, I'd be really cautious, anyway, but I do just fine with it. I only have one a week because beer makes me gain weight if I have it very often, and I'm vain enough to think of my figure.

I drink the lager. I tried the ale, and it was a little sweet for me. I haven't tried the IPA since I'm not a big fan. But the lager's good. Yay beer!

https://omissionbeer.com/

 

Extreme fatigue, in particular one that does not improve with rest, is a hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).3

Questionnaires were used to assess GI symptoms within the past 6 months, including abdominal pain, bloating and nausea. Severity of individual symptoms was scored from 1 to 5 (1=absent; 2=mild; 3=moderate; 4=severe; 5=very severe), and a total score, based on the sum of individual symptom scores, was calculated for each subject.

Are we going to discuss the scientific merits of this paper ...or do we pick and choose what we believe nowadays by reading tealeaves in the toilet bowl?

It seems like a load of speculative woo to me riding on the back of food paranoia generally ....discuss....

 

Some make cardboard look appetising. Some, however, are quite good. This appears to vary country by country. Here I eat Burgen or Helgas, but I do not know if those recipes are available elsewhere.

I have a severe non-gluten wheat sensitivity, or perhaps just non-celiac. It causes lots of symptoms, which I promptly forget about for the most part, though my severe breathing issues on wheat is life threatening. If I can manage it I would like to get some of the above biomarkers tested.

 

Its only a preliminary investigative paper. It needs much more research to show anything definitive. However all research has to start somewhere. It does not definitively identify the specific molecular pathways involved, but it hints at things - association not causation. We do not know, for example, if wheat sensitivity causes the issues, if its a coincidental finding, or if the issues are exacerbated by wheat but already exist to some extent ... and that is just some of the possibilities.

 

However if you ‘read the paper’ (to coin a phrase)...there appears to be a lot of wild speculation based on not very much...they seem to brush away the biopsy results for one and rely more on self reported questionnaires? This sounds familiar. Their links to the immune activation stuff all looks a bit woolly too and a bit generic...but I’m no immunologist. Logic dictates though that immune system dysfunction is likely in people with ME’s serum ...why does that directly correlate to gluten though?

I find it difficult to follow their logic that there is a subset of ME when the general results are so spurious.

I believe patients have the symptoms ...just not convinced this is down to a complex reaction to gluten....might be a lot simpler than that and the experimental design made no mention of other things that could cause these symptoms and have nothing to do with gluten. Their reference to some quite poor studies in itself makes me sceptical.

Were the patients on a low fibre diet or high refined carbs? had they been ill for a long time, what was their stomach acid secretions looking like? Had they been on a course of antibiotics? were there any hormonal imbalances, were they eating regular meals and had stable sleeping patterns.?

I would be interested in a lot more details on the cohorts and their reported digestive problems. I’m also worried about their over reliance on Self reported questionnaires. The link to ME looks just concocted to me.

So...
poor literature study
Dubious experimental design using self reported questionnaires
Objective measures (biopsy) showed no correlation and the reasons for this is fudged in the discussion (we didn’t take it from the right place)
Poor correlations and reasoning generally
Shows a lack of understanding of the wider research in ME or the significance of the digestive complaints in context to other more likely areas.

I’ll give it a 3/10.

Perhaps I’m being too harsh?

 

Happily, a lot of brewers are now doing gf beers, some famous names included. Both Peroni and San Miguel gf versions are available at my local supermarket. Like you, I enjoy an occasional beer so it's a really great development