Gluten Sensitivity Increased in ME/CFS: Celiac Disease Not: Take the Poll

[Cort]

Markers of non-coeliac wheat sensitivity in patients with myalgic encephalomyelitis/chronic fatigue syndrome.Melanie Uhde1,2,Alyssa C Indart1, Xuechen B Yu1,3, Sophie S Jang1,3, Roberto De Giorgio4, Peter H R Green1,2, Umberto Volta4,Suzanne D Vernon5, Armin Alaedini1,2,3

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

This published "letter" reported on celiac disease and gluten sensitivity in about 130 ME/CFS patients. It found increased rates of gluten sensitivity in ME/CFS but not celiac disease. The rates of gluten sensitivity (GS) were not that high (15%) but enough for anyone who has gut symptoms - gut symptoms were correlated with GS in this study - to consider removing gluten products from their diet and seeing what happens.

Accordingly, the algorithm identified one (0.76%) patient with ME/CFS and two (2.3%) control subjects as belonging to the coeliac disease group (P=0.3). In contrast, 20 (15.3%) patients with ME/CFS and 4 (4.6%) control subjects were categorised in the NCWS group (P=0.015). There was also a significant correlation between the calculated NCWS probability and the GI symptom severity total score in patients with ME/CFS (r=0.231, P=0.011).

Our results suggest that there may be a subset of patients with ME/CFS who have sensitivity to wheat and related cereals in the absence of coeliac disease, with potential relevance to some of their symptoms. ME/CFS is recognised as a condition with a spectrum of clinical phenotypes and underlying aetiologies. Characterisation of patients into subsets based on clinical and biological data is essential to gaining a better understanding of the condition and identifying useful biomarkers and therapeutic targets. The results of this analysis provide a rationale for examining the clinical and therapeutic relevance of food sensitivity, particularly NCWS, in the context of ME/CFS in future studies.

 

[Paw]

Yep, I've looked at this pretty closely. After a couple decades of IBS (as in 10-20 BMs per day) blood tests showed one possible marker for celiac. Endoscopy, however, came up clean. Over the past few years I've given up gluten except for some trial periods. Each time gluten clearly caused my symptoms (including abdominal pain) to return. So now it's permanently out of my life. I cheat once every other month or so without consequences. But more regular consumption is unambiguously bad.

My IBS symptoms are not fully cured, but they are reduced by at least half. Duloxetine also made a clear improvement. It's hard to judge the extent that an IBS flare impacts the rest of my CFS/FM symptoms, but it certainly doesn't help.

 

[Cort]

Yep, I've looked at this pretty closely. After a couple decades of IBS (as in 10-20 BMs per day) blood tests showed one possible marker for celiac. Endoscopy, however, came up clean. Over the past few years I've given up gluten except for some trial periods. Each time gluten clearly caused my symptoms (including abdominal pain) to return. So now it's permanently out of my life. I cheat once every other month or so without consequences. But more regular consumption is unambiguously bad.

My IBS symptoms are not fully cured, but they are reduced by at least half. Duloxetine also made a clear improvement. It's hard to judge the extent that an IBS flare impacts the rest of my CFS/FM symptoms, but it certainly doesn't help.

I can cheat too a bit without problems altho I suspect gluten causes fatigue. I never eat it regularly

 

[Creekside]

I did go completely gluten free for at least several months. It had no effect on my symptoms. At that time I was trying to avoid tryptophan and niacin rather than gluten. High-gluten meals don't bother me.

 

[Cort]

I did go completely gluten free for at least several months. It had no effect on my symptoms. At that time I was trying to avoid tryptophan and niacin rather than gluten. High-gluten meals don't bother me.

I think its possible that the rate of gluten intolerance is lower than we think; it's there, but lower than we think.

 

[Abrin]

I haven't really noticed a difference whether or I eat gluten or not. Lately, I've been experimenting with eating less carbs though.

 

[Folk]

I can't vote since I changed so much together I don't know what made what.

But my view on this is: gluten is posion for anyone and no one needs poison, but we, specially, need even less...
I try to undestand as much as I can about nutrition to have the best diet I can figure.

 

[Merida]

It is interesting that the bite of the Lone Star tick can cause a red meat allergy. Wonder if it is transmitting a certain virus or microorganism that is precipitating the allergy? Maybe the same thing is happening with gluten ?

 

[Not dead yet!]

I can't vote since I changed so much together I don't know what made what.

But my view on this is: gluten is posion for anyone and no one needs poison, but we, specially, need even less...
I try to undestand as much as I can about nutrition to have the best diet I can figure.

I agree, if we had our food to do over, we'd never pick gluten grains as the basis of our bread.

For me, getting rid of gluten had a profound effect. I gave it up completely though, not just casually. Even extreme avoiders of gluten still get unsafe levels of gluten in their diet, higher than what's estimated to be therapeutic for Celiacs.

I cleaned my kitchen, threw out utensils that were hopelessly contaminated with gluten, stopped ALL incoming food that I didn't cook myself, for six months. After that, I'm starting to go out to restaurants that have 100% gluten free kitchens. There are only two in my area. I break that rule for sushi about once a month now. This is very hard to do if you're already exhausted all the time. You have to cook nearly daily and the kitchen restart can be impossible without help, not to mention a huge up front expense. I spent nearly a thousand dollars on it, and I had family to help me, that was just the replacements of toaster, baking pans, etc..

Amazingly, I still get glutened! And very often too! My tolerance is near zero for gluten, and I can get an adrenaline high that lasts for days from a tiny cross contamination. I've made mistakes like assuming mushrooms are gluten free (they're grown on gluten grains!), smoke flavoring (often made to "stick" to meat by applying barley malt), and the vague ingredient, yeast extract (yet another pseudonym for barley malt).

Something like this can trigger it for me: https://www.glutenfreewatchdog.org/news/labeling-quiz-3/

I do have the genetics for Celiac, and I think it's been activated. but i didn't know you had to be eating gluten at the time of testing to diagnose it.

So, if you suspect this.. get diagnosed before you go gluten free. If the test is negative and you still feel benefits from being gluten free, it's still not in your head though... it's then called NCGS, non celiac gluten sensitivity.

I've found these websites to be very helpful:

Most people will need to share a kitchen so start here:
https://www.verywellfit.com/how-to-set-up-a-shared-kitchen-563065

Webinars from a trusted source:
https://celiac.org/live-gluten-free/resources/webinars/

Who's at the forefront of research? (if you're nearby, they provide screenings a few times a year for free)
https://www.uchicago.edu/research/center/university_of_chicago_celiac_disease_center/


I don't think that gluten was my entire problem and that I never had ME/CFS in the first place. If that were true, then I'd have no benefit from taking antivirals and I'd also be completely recovered or close, by now. I do think it can make a bad situation worse for those who are sensitive.

The biggest benefit, ME/CFS related, is that the constant tension in my body is gone or much much lower. I get an adrenaline high for days if I get glutened and can't sleep or think straight from all the tension it triggers. Also, the constant pain lessened by a lot, and I was able to give up opiates completely.