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

Discussion in 'ME/CFS and FM News' started by Cort, Mar 3, 2016.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It started with a failed attempt. Somehow Suzanne Vernon had prevailed upon Armin Alaedini, a PhD from Columbia University look for antibodies that might be attacking the central nervous system in chronic fatigue syndrome (ME/CFS). He found none but then decided to look a little further - and found evidence of an increased antibody response to gluten in a subset of ME/CFS patients. His finding that the degree of the antibody response correlated with symptom severity suggested that this response could be an important player for some people with ME/CFS.

    ME/CFS: It Had to Be Different

    The really intriguing finding from the study, though, was that further testing suggested that the ME/CFS patients response to gluten was different than seen in celiac disease. Celiac disease is clearly characterized by antibodies to an enzyme called transglutaminase 2 enzyme. One study reported that these antibodies are so prevalent in celiac disease that they exhibit "extraordinar(ily) high .... specificity and sensitivity" for a disease.

    They're not present in ME/CFS, though. Something else is happening. In fact, Alaedini believes the response to gluten he's seen in ME/CFS may be unique to the disorder. (ME/CFS just HAD to be different (lol)). That perhaps doesn't surprise patients who have found their disease fall through the cracks again and again but it does set the stage for a possibly exciting (and newsworthy) finding. Given the interest in celiac disease and gluten intolerance a novel finding in ME/CFS would be sure to spark considerable interest.

    Of course it would also mean that current celiac testing protocols are not terribly accurate with regard to people with ME/CFS.

    Leaky Gut Syndrome and Inflammation

    Alaedini's findings - which are publication now - set the stage for a grant application to explore not just gluten antibodies but leaky gut syndrome, the translocation of substances to the blood and systemic inflammation in a subset of patients.

    The grant approval was another bit of good news but Suzanne Vernon used her contacts to take Alaedini's research a step further. Shukla's recent study - which Vernon funded while at The Solve ME/CFS Initiative - suggested that exercise may cause the gut to leak substances into the blood causing inflammation and possibly fatigue and pain. Suzanne Vernon prevailed upon Shukla to contribute his samples to the Alaedini study.

    Those samples gives Alaedini access to another set of well-characterized patients and a quick validation of his findings. Plus he'll be able to see the effects exercise have on them and vice versa. My guess is that the ME/CFS subset with Alaedini's antibodies will exhibit greater gut leakage and more evidence of inflammation after exercise than other ME/CFS patients.

    The Bateman-Horne Center is partnering with Dr. Alaedini to provide samples from ME/CFS patients and controls.

    Gut Studies Underway

    The gut is getting a lot of attention. We just saw the publication of two Australian studies and Shukla's was published in December. The NIH Project Reporter page reports three studies have been funded in recent years.
    Drs. Lipkin and Hornig are involved in at least two, perhaps three gut studies. One was funded by the Microbiome project, another I believe was funded by the CFI, and there's' the recent NIH funded study (which provides for sample collection only.)

    Invest in ME is funding a leaky gut/microbiome project. Others are surely underway.

    Funding on the Increase

    The funding increase appears to have begun. Jennie Spotila documented a 20% increase in funding last year much of which came at the end of the year. Health Rising recently reported on newly funded blood volume enhancement study and now we have this one. It's not a huge grant; it's $200,000 R21 grant but it will allow Alaedini to gather more information he can use to get a big multi-million dollar RO1 grant. It was funded by the NIAID.
    The study has begun and is expected to wind up late next year.

    Last edited: Mar 3, 2016
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  2. keepinghopealive

    keepinghopealive Active Member

    Thank you Cort ... this is more good news!!! Seems like things are really starting to happen now.
  3. JWest

    JWest Member

    This is great news though probably not to surprising to a lot of ME/CFS patients. All the patients I know are gluten free and doing better because of it. In my own case the celiac test were negative (both serum and genetic) but many of my GI symptoms, including severe heartburn and stomach pain, improved after going gluten (and dairy and sugar) free. It's another one of those things that needs an apology from all the doctors who tell patients their tests for celiac were negative so don't worry about gluten, or worse yet "diet doesn't make any difference".
    Merida, Stella Heath and Lissa like this.
  4. Neunistiva

    Neunistiva Member

    I find this fascinating.

    I have a rather severe case of ME/CFS and I have tested positive for anti-gliadin antibodies (AGA-IgA) several times, while all the other ones were negative.

    However, I've tried gluten free diet for half a year and noticed no difference. I wonder if these findings are just an indicator of something else being wrong, rather than pointing that gluten itself is causing our illness in any way.
  5. tatt

    tatt Well-Known Member

    I thought I'd found the solution to my problems when I went on a gluten free diet. Sadly it wasn't but I was well enough to exercise and even go to a gym for some years. It can be difficult to get rid of any trace of gluten so if it hasn't helped at all it's worth checking things you might not think of s containing gluten (I've been told its in some toothpaste). Incidentally my coeliac test was negative.

    Very interested in the studies, perhaps they'll find something else that would help.
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Glad it helped. It helped me with IBS symptoms. Exercise is a bit better but still a huge problem. I would love to see evidence of autoimmunity in this disease though - even if for a subset.
    Merida likes this.
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Agreed - the celiac test misses people with other kinds of gluten intolerance. I don't if anyone has identified a marker - other than from a gut biopsy - for them. I wonder if this would be the first? (That would be cool :))
  8. Linda B

    Linda B Active Member

    I was diagnosed coeliac at almost 50 years old. I gave up all traces of gluten. No great change. It took me a long time to accept that dairy was really bad for me, and via a food sensitivity test..... Potato, lamb, and yellow food colouring. It has been said that 'all grains' affect coeliac disease but I do get away with some quinoa and rice in small portions.
    Given the number of supplements that get swallowed.....perhaps everyone may consider the conditions of their livers! My daughters liver has really suffered through her CFS years. We are seeking to rectify that at present. Fingers crossed.
    It's great news to see more funding coming the way of this hideous malady!
  9. IrisRV

    IrisRV Well-Known 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.
    Lissa and SherriNC like this.
  10. Hilary16

    Hilary16 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.
    Merida and Lissa like this.
  11. tatt

    tatt Well-Known 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.
    Merida likes this.
  12. Kristin80

    Kristin80 New Member

    This is very interesting. I don't have celiac disease, but IBS in addition to my ME. I've always had problems with my gut when exercising. (Before I was sick with ME that is). My doctor told me that I might be gluten intolerant, even though tests were negative. Started cutting down on gluten ( not completely), taking probiotics and magnesium. This has helped a lot on gut problems and some on my ME. Another thing is cutting down on sugar. Helps to relieve muscle and joint pain and not getting infections as often .
  13. marydoody

    marydoody New Member

    Thanks for this encouraging info .hard to believe that after 65 years of illnesses that I am still ignored by medical profession. It would have been a great syndrome in which to connect results of poor absorption on metabolism. So far I have had nausea from eating eggs from 2yrs old, recurring respiratory symptoms, shingles12yrs, bartonella henselae cat scratch disease starts 12years, migraines everyday and mcs and cfs from then. Age 47/48 brought high blood pressure, constant nausea and vomiting and homes aide pupil, vertigo , IBS ,dropping body temperature reaching 31 degrees c in 2012. Then brought up withT3 in February , breast cancer in june 2012, adult onset macular degeneration came 2015
    Merida likes this.
  14. ShyestofFlies

    ShyestofFlies Well-Known Member

    Prior to my wastebasket ibs diagnosis, we did a bunch of tests... Gluten blood test, Colonoscopy, endoscopy, upper gi and small bowel follow thru, small bowel mri with contrast, and elimination diets for gluten, soy, dairy (I already don't eat dairy because I know it makes me ill), and acidic foods.

    None of the elimination diets improved my ibs symptoms nor any others symptoms. The blood and other tests came back negative and completely normal, including the chrons biopsies of ulcers and gluten blood test.

    I'd also like to see dairy studies, but good luck I say to anyone who tries to research it given how well subsidized dairy is at least in the US. Pure gluten is one of my most favorite foods, so I really hope I don't have the subset with sensitivities!
    Merida likes this.
  15. jill neimark

    jill neimark Member

  16. jill neimark

    jill neimark Member

    Try hyperbaric oxgyen...
    Merida likes this.
  17. Rach

    Rach Member

  18. Rach

    Rach 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.
    Merida likes this.
  19. Rach

    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.
  20. Rach

    Rach Member