Link to "Gut" Research

    • Anonymous
      January 18, 2011 at 11:48 am

      I found this extremely interesting and thought-provoking. It is an article about how “gut” problems can exacerbate, and sometimes even cause, Chronic Fatigue Syndrome.

      I know someone here has long promoted the idea of “Leaky Gut” as a cause, or aggravator, of CIDP and other auto-immune disorders. This article goes right along, and provide supporting documentation, for that hypothesis.

      I understand that many of you disagree with, or have been frustrated with, prior diagnoses of Fibromyalgia, Chronic Fatigue, and other similar illnesses. Please consider giving this attachment a look; I’m going to post another thread today or tomorrow about FM, CFS, and other things; what I have learned in the past year; and how I think many more are affected by these illnesses than realize it.



    • Anonymous
      January 18, 2011 at 12:07 pm

      Absolutely agree, Elmo! There is research that supports a link between Celiac Disease (one of the major causes of leaky gut) and CIDP. The problem is that we don’t know which causes the other.

      I developed the CIDP symptoms before I realized I had Celiac. Getting gluten out of my diet gave me a big energy boost (because Celiac causes malabsorption of nutrients), but it did not cure my CIDP.

      I’ve been gluten-free for over 4 years now — with the exception of an occasional mistake — and still have CIDP flare ups.

      Brian Sullivan

    • January 18, 2011 at 12:56 pm

      I decided to go gluten-free somewhere between 3-6 months after I was diagnosed with CIDP. I couldn’t tell for sure if it was from the prednisone doing the healing or becoming gluten-free that gave me a feeling of well-being, but I am still gluten-free.
      About two months ago I had an attack of urgent diaherra and all I had eaten was some frozen cauliflower with spices. I told myself to doublecheck the spices and sure enough WHEAT was inlcuded.
      I don’t want to get tested because the gold standard is an intestinal biopsy.
      I would rather go gluten-free because it does not harm one’s health to do so.
      There is a blood test that may or may not be accurate. Also I recently learned that older adults such as my self can develop celiac disease later in life although it was not present in younger years.
      There is not only celiac disease, but gluten sensitivity and gluten allergy which can cause problems.
      After 2 years of prednisone and tapering off slowly with continued improvement Iam no longer taking any meds for CIDP and I will continue to go gluten-free whether I need to or not. It Can’t Hurt.

    • January 18, 2011 at 5:31 pm

      OMG Elmo!!! Finally, someone who understands!! Kev did so good all summer and fall, then we had to go on antibiotics again for staph infection in sinus and the L G reared its ugly head again. We are back on our pro, pre biotic regimen. It is all in the worms baby!!! As soon as Kev is 18, we are worm bound hopefully by then, the phase three trial being run by 3 docs one of which is in Illinois, 20 minutes from us will be done. There is hope!!!! If you can heal the gut, the worms can rebalance the immune system. The alter t-cell regulator production. There really is hope. MS’rs are being cured with the “worms” and it cures the leaky gut. There has to be a reason the gov is holding back. Gee, could it be big Pharma? So many drugs would be unnecessary!!

    • Anonymous
      January 19, 2011 at 12:32 pm

      Elmo, you are on to something here, and I do not understand why docs don’t get on board here. Alice has been preaching this for a while too.

      One of my main symptoms at the time of the vaccine injury was severe stomach problems/nausea. I have had issues my whole life, but this time was severe. I recovered for several months after, but took a prophylactic antibiotic in October and had a major relapse. I went to the doctor for all kinds of tests, all negative. I started taking a probiotic, doing better. Last week, I was exposed to some kind of stomach bug, severe problems again and now relapsing again. There is definitely a connection. So far, I have been told I have mild GBS/fibro/CFS, but have not really been given much help to deal with this. Thanks for sharing this…..

    • Anonymous
      January 23, 2011 at 3:37 pm

      Just read the G Free Diet by Elisabeth Hasselbeck. Great and eye opening read. I recently tested positive to gluten sensitivity and have begun a gluten free diet. I never really knew what celiac disease was. The only symptom of the disease that I experienced was numbness and tingling in my toes for about 4 years before coming down with GBS. That numbness and tingling was never diagnosed by my PCP or Neuro.

    • Anonymous
      January 24, 2011 at 10:17 am

      As part of my never-ending diagnosis/testing process, I had two “scopes” done a couple months ago; both “Upper Endoscopy” and “Colonoscopy” the same day.

      The GI doc explained that to test for Celiac, Graves, and other “similar” illnesses, they had to take a small biopsy from the small intestine for testing. He was all aflutter after the procedures…said he got his “scope” farther” up into my “small” intestine than he had EVER been able to, with any patient, in the past. “Things just seemed to line up perfectly!”, he exclaimed! For some reason, I felt entirely violated after that…:rolleyes:

      But, the tests showed that I had neither Graves or Celiac Disease; I think, though, that many can be “Gluten Sensitive”, without being officially “allergic”. I know that’s the case with many antibiotics since all this started; I NEVER used to have a problem with any medication’s side effects (except some antidepressants), but now, everything seems to be much worse.

      Things I thought were especially interesting in this report include:

      67% of those diagnosed with CFS (Chronic Fatigue Syndrome) were found to have a “gamma-retrovirus”, that only 3% of the “healthy population” carried.

      “[I] the human herpes virus-6 (HHV-6), a neurotropic, gliotropic, and immunotropic virus, is more often found in patients with CFS than in healthy controls[/I]”

      “[I]The prevalence and median values for serum IgA against the LPS of enterobacteria were significantly greater in patients with CFS than in normal volunteers and patients with partial CFS. Moreover, serum IgA levels were significantly correlated to the severity of illness, as measured by the FibroFatigue scale [12].[/I]”

      “[I]Investigations have documented that there are marked alterations in the gut microbiota of CFS patients, with lower levels of Bifidobacteria and higher levels of aerobic bacteria [18]. [/I]”

      “[I]Disruption of mucosal barrier function occurs in CFS as demonstrated by the increased serum concentrations of IgA and IgM to LPS of gram-negative enterobacteria [12]. [B]Psychological stress [/B]disrupts the mucosal barrier allowing increased entry of antigens and microorganisms, which in turn is expected to stimulate hyperactive responses in the mucosal immune system.[/I]”

      And, finally, something that I think might create a lot of interest here…

      “[I]Butt and colleagues reported that fatigue presentation in CFS patients with symptoms of IBS was more severe than in CFS patients without irritable bowel [46]. Furthermore, patients with both CFS and IBS had poorer appetite, increased abdominal pain, increased severity of loose stools, diarrhea, nausea, and gastric reflux. [B]The gut microbiota influences the sensory, motor and immune system of the gut and interacts with higher brain centers even at extremely low levels [50]. [/B]So aberrant gut microbiota and gut barrier dysfunction may actually be creating an “irritable” bowel. Altered intestinal microbiota and gut barrier dysfunction could also contribute to the symptoms of CFS through increased translocation of LPS from gram-negative enterobacteria[/I].”

      As I think I said earlier, everyone with ANY chronic illness, which puts the body in a heightened state of stress, is at risk of developing Chronic Fatigue Syndrome, as a result of the onset of other illnesses, like CIDP. Then the old “Chicken and the Egg” discussion starts…:rolleyes:


    • January 25, 2011 at 12:56 pm

      We also tested Iga positive for Epstein Barr”MoNO”
      If you go to a naturalist, specifically a dans doc as they theorize autism is caused by leaky gut, they will do a stool sample that tells you your exact gut flora. As well, when the mucosal lining deteriorates (LG) it is usually due to candida as a result of antibiotics, even just one coarse for some. Once the mucosal linig is compromised, toxins escape through the intestine causing neuro toxins in the body which increase mast cell production, aka mastoenterocolitis, something like that, don’t have my papers of research in front of me. The over production of mast cells is how the insensitivities/allergies result. Coincidentally, Kevin did not test positive on the scratch test or rast or cap rast for allergies to anything. In fact, the eliza blood test indicated severe allergy to hocolate and moderate high to all dairy and sugar. MD’s do not really recognize the blood test or for that matter, isensitivities causing problems. I will telll you once we had the candida verified by testing the specific gut flora, we were on a coarse of nystatin (benign, basically mud as opposed to diflucan which is hard on the liver and can actually cause addison’s) grapefruit seed extract to kill the bad candida which is what eats at the mucosal lining and several pro/pre biotics to rebuild the gut AND>>>>erradicated the sensitivities, Kevin’s headaches, red cheeks, slapped look, frequent colds, pain, fatigue etc…..started clearing up. We have since stopped the pro/prebiotics and had to go back on antibiotics because of staph infection in sinus’s and he is again VERY symptomatic w/cfs and cidp symptoms. We are going to start the regimen again. Unfortunately Kevin has taken a back seat lateley regaring my medical attention as my father is in a serious situation. I thank God every day that he is allowing me to stay healthy enough to take care of everyone.

      I am so excited to see someone else make the connection.

      Incidentally, the worms are in phase 3 trial, the proteins they emitt from die off are what heal the mucosal lining as well rebalance the immune system because they encourage t-cell regulators to produce. Which is something that our immune systems are not doing.

      Please keep posting, it encourages me to keep searching as well.

    • Anonymous
      January 25, 2011 at 1:12 pm

      Hi Dawn,

      Can you PM the name of the doc that you went to that was treating Kev for candida and tested for this? I suspect that I have a lot of these issues too. I am taking a probiotic, but would like some more guidance with this. I would appreciate it.

      Sorry to hear about your dad. You are one strong lady!! Your family should be so grateful.


    • January 25, 2011 at 1:43 pm

      I sent you a pm