GI centered Fibromyalgia or CFS/ME may be an Enteropathy

Discussion in 'General Discussion' started by Pgrovetom, Jul 10, 2019.

  1. Pgrovetom

    Pgrovetom Member

    An old problem: Gut damage-> immune response →pain→neurological→neuro-psychiatric symptoms mascarading as CFS/ME or Fibromyalgia.

    I would suggest investigating GI Enteropathies by anyone with GI and Fibromyalgia-like or CFS/ME-like symptoms that seem to be effected by diet and antibiotics. Enteropathies can cause GI centered with complex and widespread pain and neurological symptoms. They are generally caused by damage to the intestines known as villous atrophy or duodenitis. The damage is typically done by an aberrant immune response that attacks the intestinal lining. It can be caused by a response due to a foods (Gluten, cow’s milk and soy proteins), virus’s (norovirus, rotavirus, adenovirus, and astrovirus), a parasite (giardia, worms, strongyloidasis, pinworms, trichinosis), autoimmune, bacteria(H. pylori, tropheryma whipplei, toxigenic gram negative gammaproteobacteria such as Klebsiella,V. cholerae, Escherichia coli), Common Variable Immune deficiency or HIV, and medications (NSAIDs and ARBs such as Olmesartan). The combination of a T Cell plus IgA immune response plus increased permeability can lead widespread inflammation, neuro-inflammation and pain through the body. The activated T Cells and IgA can then circulate and target smooth muscle tissue throughout the body.

    Here is a list by frequency of possible causes:

    Here is a diagnosis diagram:

    The best known enteropathy is caused by the immune response to Gluten which when severe is known as Celiac Disease. The damage can be seen in the small intestines as duodenum villous atrophy or duodenitis. Celiac Disease involves both a complex body-wide T Cell and antibody based immune response. Celiac Disease is typically diagnosed by testing for HLA DQ-2 or DQ-8 genotype, anti-tTG antibodies, anti-endomysial antibodies. The damage can sometimes detected and monitored for severity with the F-Actin IgA Antibody test ( not IgG). In 5-10% of cases, it can be seronegative showing no antibodies. This can lead to missing true Gluten/Celiac Disease. The acid-test is an endoscopy which takes a biopsy to look for villous atrophy or duodenitis in the small intestines duodenum. But the discovery of villous atrophy or duodenitis can be due to a variety of other causes rarely investigated or even understood by many GI doctors. The other causes that can mimic Celiac in many ways or produce their own different symptoms. They are listed by frequency in the table. Celiac is easily treated by a rigorous lifetime Gluten free diet. If that diet doesn’t help than the diagnosis must review all possible causes. Here are 2 excellent reviews:

    Due to the intestinal lining damage, increased permeability and GI/body-wide immune responses, most of these follow similar patterns of symptom changes due to diet and anything that alters the gut microbiome such as anti-microbials. Altering the microbiome alters the bacterial mix, metabolites, toxins, and a wide variety of antigens. Tropical Sprue is a key example that is not understood and has been called “a riddle wrapped in a mystery inside an enigma”. It is often associated with gut microbiomes that include the toxigenic Gammaproteobacteria such as klebsiella, V. cholerae, Escherichia coli and others. It is suspected that the toxins produced by these bacteria both aggravate the damage and stimulate a wide immune system response in addition to other immune responses. I hope you can see why this is an area to have investigated if your Fibromyalgia or CFS/ME symptoms include some IBS-like symptoms and vary in unpredictable ways with foods such as sugars and carbohydrates and antibiotics. This is a strong clue that varying your gut microbiome and all it involves is effecting an enteropathy immune reaction that goes beyond your gut.
  2. Edie

    Edie Active Member

    This all makes sense to me! I had already been diagnosed with FM. Two years later, my health took a big dive downwards due to the enterobacteria Klebsiella. That's when I should have also been diagnosed with ME/CFS as well. My MD. missed that, but my new Naturopath Doctor didn't. He cleared me of it right away, but unfortunately the damage had already been done. Hopefully your article will lead to answers for many other sufferers of ME/CFS/FM. Thank you so much!
  3. Pgrovetom

    Pgrovetom Member

    The tricky part is determining if there is actual damage since only the duodenum can be checked during an endoscopy. Celiac does widespread damage and starts at the duodenum so is often caught. But other causes such as a parasitic infection, gram negatives aggravation etc.. might only damage the small intestines below the duodenum.

    The OVA and parasite stool test only looks for eggs in the stool and are at best 10% sensitive. But not all parasites produce visible eggs. I found the Ubiome Explorer Plus test to be very useful. Unfortunately they may be closing down due to financial issues and billing fraud. That sucks.

    Their new Explorer Plus does NGS shotgun sequencing plus 16S sequencing on your stool. It can find any DNA fragments in the stool (i.e. in your gut). They eliminate the human DNA and most irrelevant DNA. They count the amount of human DNA which is an indicator of intestinal lining shedding which is normal and good. Low human DNA suggests a problem.

    Once they eliminate the irrelevant DNA, it leaves the Eukaryotes, Bacteria, and the Archeae. Then you get a taxonomy tree of everything in your gut including Fungi and Parasites. Its your job to find what might be causing a problem and what might have been in something you ate.

    I found some things that were in all or most of my 5 samples over 6 months and worrisome. They all are pathogenic in humans. They include:

    Diphyllobothrium, Dicrocoelium, Nippostrongylus , Spirometra, Plasmodium and Syphacia .

    Plasmodium is malaria. The others are worms.

    This is just one angle trying to investigate what is damaging my intestines as seen in my endoscopy and the F-actin IgA antibody test. Its almost impossible to get any infectious disease doctor to do anything but an OVA and parasite test if you are lucky. If you don't show eggs, you are out of luck.

    If you told them you had a Ubiome NGS and it found malaria, and you also had macrocystic anemia, immune system irregularities, an Antinuclear Antibodies, IFA, Positive Abnormal with Speckled Pattern 1:160 High with Dense Fine Speckled pattern suggestive of malaria. This pattern suggests the presence of DFS70 antibody which has a low prevalence in systemic autoimmune rheumatic diseases but suggests possible chronic malaria. They would tell you to see a therapist or psychiatrist. So you are on your own. If any of this is real, no ID, GI, or rheumatologist I've seen would help you. Especially at Stanford, UCSF and the Mayo Clinic.

    But there are good integrative and alternative doctors who will help dig in and rule these in or out. If you have been diagnosed with CFS or FM but have evidence of an infection, only a few doctors will dig into possible causes like GI enteropathy and its causes such as parasites. But the papers I've included and the various tests available can help.
    Last edited: Jul 12, 2019