Novel Finding Sparks NIH Chronic Fatigue Syndrome (ME/CFS) Gut Study

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'd like to see someone look at dairy as well as gluten. It seems to me as many of us are sensitive to dairy as are sensitive to gluten, and more than a couple of people seem sensitive to both.
Agreed. Dr. Rowe has said that if someone has a dairy allergy and it's not addressed - none of the treatments that might help will help - the dairy gives too big of a hit.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
It excites me that more and more research is being undertaken in relation to ME/CFS. Along with ME I too have IBS and am celiac (MCS, CSS and Irritable Larynx syndrome also) - and a simple (!) gluten free diet didn't resolve it all. I am now following the FODMAP protocol and it certainly helps. Nothing is a slam dunk with ME/CFS is it? Just grateful that research momentum is building.
That's my feeling about this as well. This study is a not game-changer - but its a good sign that momentum is building :smuggrin:
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'm one of the ME/CFS people who tested negative for celiac, but who has a very real gluten sensitivity. I stopped all gluten over 7 years ago. It didn't fix my CFS, but it greatly reduced my pain and my repetitive stress injuries, which I used to have all the time. After I gave up gluten, I tried a tiny bit of bread or pasta about 3 or 4 times. An hour and a half later I'd get roving joint pains all over my body. Then I'd get nausea and a headache that would sometimes last 3 day. Ugh! No more experiments with gluten!

A couple of years later I gave up all milk and dairy. My chronic knee pain went away. Then a couple of times I made a mistake and ate a tiny bit of cheese. An hour and a half later I got joint pain all over my body. No more experiments with dairy!

I never had severe GI trouble from either food and have not been diagnosed with IBS, but I have had frequent loose-ish stools which haven't gotten better by giving up wheat and dairy.
That''s amazing...When I gave up nightshades my knee pain disappeared. I'm pretty sure that corn causes neck pain....I'll bet I'm missing some things as well.
 
Yes, they are working on a drug as my article said. But in reality the zonulin is being triggered by something--gluten in some, infection in others. I recall Cort posting about someone who got better using probiotics. Prebiotics, probiotics and dietary change would be worthwhile.

"We and others have suggested that changes in the distribution and localization of two tight junction proteins (zonula occludens-1 and occludin) in the intestinal tissue are associated with higher gut permeability in obese and diabetic rodents. This phenomenon has been directly linked to specific changes in the gut microbiome [9–13]. In addition, we have demonstrated that specific changes of the gut microbiota by using prebiotics (short chain inulin-type fructans, oligofructose) positively affect the gut barrier function, with a marked improvement of the gut permeability and the hepatic and systemic inflammatory tone. These interesting effects observed after changing the gut microbiota by prebiotics demonstrated a novel microbiota–host interaction dependent effect. Importantly, we have recently discovered that in addition to the previously considered impact of prebiotics on Bifi- dobacterium spp. and Lactobacillus spp., prebiotic treatment modifies up to 102 gut bacterial taxa from the phylum level down to the 100%-ID phylotype level."

http://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(14)60970-8/pdf

In my case, I had obvious celiac with uclerative proctitis from age 9 that was completely missed through my entire childhood and much of my early adulthood, until I figured it out. I also was caesarean, so I didn't get the lactobacilli and bifidus I needed from the vaginal canal of my mother, *and* she stopped breastfeeding after 6 weeks, and bottle feeding leads to a less diverse and healthy microbiome. All that makes me wonder if my gut will ever be "normal" or can be totally repaired. And there is also the very serious issue of cross contamination on a gluten free diet, which I have written about in Quartz recently:

http://qz.com/569410/the-gluten-free-craze-is-making-celiacs-like-me-sick/

Cross contamination is *sooooooooo* pervasive, that limiting all grains for a while (except white rice, which Fasano allows on his trace elimination diet) might be helpful.
 
Yes, it also stabilizes and reverses macular degeneration. You can lease a home chamber from Oxyhealth, and the lease and shipping will go toward purchase if you decide to. It's not a weird lifestyle, lots of people do it and love their chambers! :)

I've tried hyperbaric oxygen. I did it 5 days a week for over 4 weeks in January. I found that I definitely felt better after an hour in the chamber. Feeling better would last about 3 hours at the beginning of the week. By Friday I would feel a lot better by the end of the week. Then I'd feel worse over the weekend. It helped my glaucoma - my eyeball pressure went down enough to get me off one of the noxious drops I had to put in my eyes twice a day. I'm thinking of renting a unit - it's cheaper and I would be able to do it every day. This would be a weird lifestyle, but everything about CFS creates a weird lifestyle and it sure would be nice to feel better. HBOT has helped more noticeably than almost anything else I've tried.
 

LondonPots

Active Member
Ohhh, gluten. I love it, it seems to hate me. Every time I give in and make or buy some sourdough spelt bread (should be okay, so right-on), after a few days of eating it I end up feeling as though my entire gut is on fire. I've reluctantly thrown away my sourdough starter and am back on a gluten-free diet. I'm fairly sure it's the gluten, not the sourdough yeast, since this effect pre-dates this particular obsession.
 

ShyestofFlies

Well-Known Member
Ohhh, gluten. I love it, it seems to hate me. Every time I give in and make or buy some sourdough spelt bread (should be okay, so right-on), after a few days of eating it I end up feeling as though my entire gut is on fire. I've reluctantly thrown away my sourdough starter and am back on a gluten-free diet. I'm fairly sure it's the gluten, not the sourdough yeast, since this effect pre-dates this particular obsession.
Have you looked into a low fodmap diet? https://stanfordhealthcare.org/content/dam/SHC/for-patients-component/programs-services/clinical-nutrition-services/docs/pdf-lowfodmapdiet.pdf
 

Katie

Active Member
I just spent a week away and for the first time in well over a year I ate foods with gluten like (delicious) french toast with raisins and syrup. It was yummy but very heavy on my stomach. I've had a lot more nausea and feel lousy. Headaches too. The hotel we stayed did not have a kitchenette like I usually stay.
Now that I'm back home I'm back on my regular non-gluten food and much decreased sugar I'm hoping to feel better soon.
I have been dx with leaky gut in the past and I'm really curious to find out the link between our guts and ME. Good news
 

Rach

Member
I'm one of the ME/CFS people who tested negative for celiac, but who has a very real gluten sensitivity. I stopped all gluten over 7 years ago. It didn't fix my CFS, but it greatly reduced my pain and my repetitive stress injuries, which I used to have all the time. After I gave up gluten, I tried a tiny bit of bread or pasta about 3 or 4 times. An hour and a half later I'd get roving joint pains all over my body. Then I'd get nausea and a headache that would sometimes last 3 day. Ugh! No more experiments with gluten!

A couple of years later I gave up all milk and dairy. My chronic knee pain went away. Then a couple of times I made a mistake and ate a tiny bit of cheese. An hour and a half later I got joint pain all over my body. No more experiments with dairy!

I never had severe GI trouble from either food and have not been diagnosed with IBS, but I have had frequent loose-ish stools which haven't gotten better by giving up wheat and dairy.
One more thing about gluten sensitivity - I have read that some grains (oats and quinoa, for example) that don't contain gluten are broken down through digestion into fragments that resemble fragments of of the gluten molecule and can cause the same problems. And I've discovered that I get a mild reaction (roving joint pains) when I eat oatmeal or quinoa. I wonder if people who don't get results from a gluten-free diet are eating oatmeal or quinoa or other similar grains.
 

Beth

New Member
This is my main problem from the very first day 30 years ago. No doubt that I am of this subset. I hope this comes to something useful and maybe it could lead to something for other subsets or back to the main. Every piece of the puzzle has to help somehow.
 

marydoody

New Member
I've tried hyperbaric oxygen. I did it 5 days a week for over 4 weeks in January. I found that I definitely felt better after an hour in the chamber. Feeling better would last about 3 hours at the beginning of the week. By Friday I would feel a lot better by the end of the week. Then I'd feel worse over the weekend. It helped my glaucoma - my eyeball pressure went down enough to get me off one of the noxious drops I had to put in my eyes twice a day. I'm thinking of renting a unit - it's cheaper and I would be able to do it every day. This would be a weird lifestyle, but everything about CFS creates a weird lifestyle and it sure would be nice to feel better. HBOT has helped more noticeably than almost anything else I've tried.
Thank you Rach . I have heard about it especially in relation to natural cancer therapy but don't know if It is available in Ireland where I live. Will google it. I find going to Canary Islands for a month in November , January and March helps temporarily especially when warm and dry. I had to leave work 25 years ago as could not breathe and when I took a breathe it felt like a weight in my chest. Indoor air is a problem . Many thanks again for suggesting the hyperbaric oxygen.
 
One more thing about gluten sensitivity - I have read that some grains (oats and quinoa, for example) that don't contain gluten are broken down through digestion into fragments that resemble fragments of of the gluten molecule and can cause the same problems. And I've discovered that I get a mild reaction (roving joint pains) when I eat oatmeal or quinoa. I wonder if people who don't get results from a gluten-free diet are eating oatmeal or quinoa or other similar grains.
Rach, they're often cross contaminated, both, by barley. Try purity protocol oats. Google "purity protocol oats gluten free watchdog"--her site has the best sources. And make sure to get a certified gluten free source of quinoa--
 

tatt

Well-Known Member
it is possible to buy enzymes that are supposed to help break down gluten. When we travel and I cant eat gluten free I take Peptizyde (uk people can buy from mandismart, cheaper than Amazon). I've tried Glutenease but it leaves me feeling more ill than Peptizyde. Neither of these is a substitute for a gluten free diet but they might help with contamination or accidental gluenting.

There are likely to be several subgroups within the ME/CFS population but it's good that people are working to identify them. On a personal level I'd love to be able to show my gp something that said non-coeliac sensitivity isn't just a fad! Not a big enough study to do that yet.
 
Tatt, those enzymes are questionable--not there yet (I've read all the peer review research). They'd be useless for celiac, possibly helpful to some extent for gluten sensitivity, but I wouldn't bank on them. One day, perhaps.
Show your GP the Barcelona study I wrote up, and Fasano's estimates. If you have celiac haplotypes (the HLA types), you seem to be at higher risk for both celiac and gluten sensitivity :)
 
By the way, if your secretory IgA is low, you can test negative on the IgA antibodies for celiac. Some practitioners miss that, and you get a negative result. If you bring up your secretory IgA through other measures (sacchoromyces boulardii and other interventions) and retest you can get a positive. A small percentage of folks have experienced this.
 

Paw

Well-Known Member
My elevated gliadin (DGP) IgG was enough to trigger an endoscopy (IgA was normal), but no evidence of celiac was found. Still, after much experimentation, I found gluten consistently aggravated my IBS and caused gut pain. So I'm sticking with non-gluten diet.

It's disheartening to hear so much bad news about dairy. I'm afraid that's what I'll have to face next. But if it relieves some of my leg pain in might be worth it.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
My elevated gliadin (DGP) IgG was enough to trigger an endoscopy (IgA was normal), but no evidence of celiac was found. Still, after much experimentation, I found gluten consistently aggravated my IBS and caused gut pain. So I'm sticking with non-gluten diet.

It's disheartening to hear so much bad news about dairy. I'm afraid that's what I'll have to face next. But if it relieves some of my leg pain in might be worth it.
It is hard to give up a food but if it works the struggle is well worth it. I have heard that it's the foods we crave that tend to give us the most problems.
 

IrisRV

Well-Known Member
It is hard to give up a food but if it works the struggle is well worth it. I have heard that it's the foods we crave that tend to give us the most problems.
That is my experience. What biological/evolutionary process would drive us to crave the foods the give us the most problems? o_O It's like somebody's nasty practical joke. :p
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
That is my experience. What biological/evolutionary process would drive us to crave the foods the give us the most problems? o_O It's like somebody's nasty practical joke. :p
It's pretty cruel really. There's gotta be a reason for it. I wonder if bad bacteria in the gut are tweaking our cravings somehow.
 

Linda B

Active Member
Try n-acetyl-cysteine. I have tried both powder and capsules and the powder works well for me. Tastes terrible, that's why I bought pills - but they (Swanson) were so poor I wonder if they actually contained any of the product. I get the powder from a bodybuilders website :)

Oh and when I say works well - had a liver test that needed further investigation but in the months I waited for that I took NAC and no problem on further investigation.
Thanks. My daughter has the nac tablets......but usually forgets to take them! I will have to become the 'nagging' but loving mother! Thanks again.
 

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