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Lack of proteases (pancreatic enzymes) and the symptoms of CFS

Discussion in 'Gastrointestinal and Urinary' started by Annesse, Dec 28, 2011.

  1. Jenny

    Jenny Senior Member

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    Hi Annesse

    This website simply has a link to a very brief summary of a study from the 1990s of 53 ME or CFS patients. 3/5 had antibodies to gluten, and 1/3 had gut inflammation. It is therefore suggested that some ME patients actually have celiac and have been misdiagnosed. I don't see how this provides any evidence that both diseases are caused by a lack of protease.

    Jenny
    Waverunner likes this.
  2. Annesse

    Annesse Senior Member

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    Hi Jenny, I posted the link to show the association between CFS and celiac. We know celiac is caused by an inability to digest at least one protein (gluten). Why is celiac disease also connected to all of these other diseases? I wasn't trying to prove difinitively the connection with proteases by this one comparison. It is just additional evidence that they are connected. Here is another link that maybe shows the point I am trying to make a little more clearly.

    http://www.celiac.org/index.php?option=com_content&view=article&id=4&Itemid=10

    So, my point is, there is a connection to CFS and celiac disease. We have been able to trace all of the symptoms of CFS back to the inability to digest proteins.
    We can also trace all of the symptoms of celiac disease back to an inability to digest proteins.
    In addition, we can trace all of the other symptoms of the diseases "connected" to celiac back to an inability to digest proteins.
    So, what is the connection to all of these diseases?
  3. Jenny

    Jenny Senior Member

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    But the link doesn't show this. It just shows that some ME or CFS patients have gluten intolerance and some have an inflammed gut. So they may have been misdiagnosed with ME or CFS.

    I've no idea whether I've got an inflammed gut (don't have any gut symptoms) and don't have gluten intolerance but I do have ME.
  4. adreno

    adreno 3% neanderthal

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    CFS is associated with numerous other syndromes and disorders, because the symptoms of CFS (primarily fatigue) are very unspecific. Since there is no way to objectively diagnose CFS, it is a clinical diagnosis. In essence, this means that you have CFS if your doctor decides that you have it, and give you the diagnosis. I do not question that people are sick; what I'm saying is that there is a grey area where some people might be falsely diagnosed. Until we can definitively separate the diagnosis of CFS from other syndromes, the primary symptoms of CFS is going to be associated with many other diseases. Cancer patients, for example, are chronically fatigued, does this mean they have CFS? Of course not. So even with an overlap of symptoms, etiologies might be very different. This is where the study I posted above (and other studies) are becoming interesting, because different biological signatures are starting to emerge, which can demarcate one syndrome from another.

    I think it's great that you have a hypothesis, and you may turn out to be right. We wouldn't get anywhere without people making hypothesis. But if we want to do things right (and we do) we cannot jump from the hypothesis directly to the conclusion. A hypothesis must be tested before we conclude anything.
  5. Annesse

    Annesse Senior Member

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    Hi Jenny, here is a direct quote from the link I posted.

    "ASSOCIATED AUTOIMMUNE DISORDERS
    Insulin-dependent Type 1 Diabetes Mellitus, Liver diseases, Thyroid Disease-Hashimotos Thyroiditis, Lupus (SLE), Addisons Disease, Chronic Active Hepatitis, Rheumatoid Arthritis, Turner Syndrome, Sjgrens Syndrome, Raynauds Syndrome, Alopecia Areata and Scleroderma"

    "OTHER DISORDERS LINKED WITH CELIAC DISEASE
    Down Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, Williams Syndrome"

    This is really the only message I was trying to convey, that CFS and the other diseases we have been discussing (such as hypothryoidism) are connected IN SOME WAY to celiac disease.
    The last link I posted isn't saying anything but that these diseases are connected to celiac disease. Sorry about this, I will try and be more clear in the future.
  6. Jenny

    Jenny Senior Member

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    Thanks for clarifying Annesse. But in that link the only evidence they present that suggests that ME is connected to celiac disease is that some people diagnosed with CFS have gluten intolerance and/or gut inflammation. That doesn't in itself prove a connection. There may be some kind of connection, but it may just be that some patients are misdiagnosed. In any event we have to account for the fact that not all ME or CFS patients have gluten intolerance.

    Like Adreno, I'm interested in your hypotheses, but I think that given the evidence a more tentative approach is needed in presenting them and in drawing any conclusions. That's how science proceeds.

    Jenny
  7. Lou

    Lou Senior Member

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    Partial quote from Adreno: "......., because the symptoms of CFS(primarily fatigue) are very unspecific." Fatigue, pretty much the gist of it, huh? I'm afraid you show little awareness of the disease I've had for many years.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The best CFS clinicians and researchers have found positive ways to diagnose ME/CFS--not just through elimination. There are known lab abnormalities that, if you know what to test for, give, when taken as a whole, clear indicators for a ME diagnosis.

    There is now an international consensus for diagnosis that was agreed on -- 100% by all-- by the leading researchers and clinicians in the field.

    Sushi
  9. adreno

    adreno 3% neanderthal

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    So you're saying that the diagnosis of CFS is no longer clinical? That's interesting, could you provide a citation or a link to those lab criteria?

    It would also be interesting to know if you are of the conviction that the researchers who in various contexts (like in the above discussed about celiac being associated with CFS) has diagnosed the patients according to these objective lab standards? Because if they haven't, they're comparing syndromes on a clinical basis, based on symptoms. And AFAIK, a lot of patients with CFS has been misdiagnosed in the medical system.

    The point I'm making is simply that the symptoms of CFS are unspecific enough to overlap with many other syndromes, at least to researchers who are not specialized in the field. That some symptoms of celiac and CFS (fatigue, allergic reaction, gut problems aso) are similar, does not in any way prove or substantiate that they are of similar etiology. As you very well know, those symptoms can have many different causes, the inability to break down gluten being just one of them. It's also questionable if celiac patients suffer the myriad of symptoms that CFS patients often do. But since CFS is a spectrum, maybe some milder cases of CFS are clinically similar to celiac disease.

    Anyway, if you really want to have this debate, we must be clear in our definitions. What exactly does it mean that celiac has been "associated" with CFS?
    Waverunner likes this.
  10. Lou

    Lou Senior Member

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    Quote from Adreno: "Anyway, if you really want to have this debate, we must be clear in our definitions."

    Much new investigation has been done regarding ME/CFS in last few years. Please cite recent studies indicating this disease as primarily fatigue.
  11. aquariusgirl

    aquariusgirl Senior Member

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    Rich
    Do you think in light of your thoughts on low amino acid status, that it would be useful to supplement them?
  12. richvank

    richvank Senior Member

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    Hi, Annesse.

    I spent a few hours in the medical library at UCSF today, and I was able to get the full papers for some of the abstracts you have cited in your book. I also looked up some other things in addition. Mostly I was studying lupus, since that is the disease you have direct personal experience with. Here are some things I learned:

    As you have cited, people who have lupus do not have normal Dnase1 activity, and this is associated with inability to break down chromatin-IgG complexes (also called neutrophil extracellular traps or NETs) that form as a result of the response of neutrophils to infections, and subsequent antibody response to the chromatin (DNA and associated nuclear proteins) residues they produce.

    There has indeed been a test of recombinant DNase1 (which as I reported earlier was developed to treat people who have cystic fibrosis) on people with lupus (PMID: 10025601), as well as on lupus-prone mice (PMID: 9643311). The human test was run at the NIH, in fact. Both were unsuccessful. Here is a very interesting quotation suggesting why from the paper by Hakkim et al. (2010) that you cited in your book:

    "Recombinant DNase1 was shown to be ineffective as a therapeutic agent in SLE patients. Our data suggest that this failure was, at least in part, due to the presence of DNase1 inhibitors and Abs [antibodies] that prevented NET [neutrophil extracellular trap] degradation. It is possible that an alternative nuclease might be helpful in the treatment of patients who have DNase1 inhibitors."

    Now, where could sauerkraut fit into this picture? Well, the bacteria in sauerkraut have been analyzed by DNA fingerprinting (PMID: 17921264), and they are several species of lactic acid bacteria. At the end of the fermentation, the main one is Lactobacillus plantarum, because it is the most acid-tolerant. It has been found that with appropriate culture media, this species of bacteria does produce extracellular nuclease (PMID: 4330742). I don't think its structure has been analyzed, but it would be very unlikely for it to be the same as DNase1 (Even cows produce a different version of DNase1 than humans do). This species of bacteria has also been found to produce proteolytic enzymes (PMID: 10427046).

    So I suggest that the bacteria in the sauerkraut supply both nuclease that is not subject to inhibition in people who have lupus, as well as proteases, and apparently when the sauerkraut is eaten, at least some of these enzymes are able to enter the blood stream (we know that digestive enzymes will enter the blood stream if taken away from mealtimes), and the combination is able to break down the NETs. I think that would explain your recovery from lupus.

    In view of this, I still believe that you have a plausible hypothesis for the successful treatment of lupus with sauerkraut. I have to tell you, though, that I am still not convinced that this treatment will cure ME/CFS, which I still do not believe is autoimmune, based on the available evidence.

    I did not have time to try to understand what might be going on in other autoimmune diseases, but I still think it is at least plausible that the bacteria in sauerkraut could supply enzymes that could break down malformed proteins that may be provoking autoimmune responses in the other autoimmune disorders. It would take some work to piece together the mechanisms that might be involved.

    Best regards,

    Rich
  13. Annesse

    Annesse Senior Member

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    Thank you for all of your hard work on this Rich. I appreciate it very much.

    I have to say, though, that I have emails, letters, and phone calls coming in daily now that attest to the diets success in RA, fibromyalgia, ME/CFS, lupus, Sjogren's, hypothyroidism and MS. We haven't really compared the symptoms and findings in lupus with CFS like we did with MS, but I can tell you, there is really very little difference between lupus and CFS. As you know, I don't believe these are really separate diseases at all. I believe they are the symptoms of pancreatic enzyme deficiency disease (PEDD). I was diagnosed with CFS and fibromyalgia first. Then, as the enzyme deficiency became more severe, I had an additional symptom, and that is what led to a diagnosis of lupus. Nothing had changed, except one thing, I developed a malar rash.

    We can trace every symptom of all these diseases back to the inability to break down dietary proteins, the missing nutrients found in these proteins, and elevated TNF due to a lack of serine proteases. So, if every symptom and valid scientific finding in CFS is then accounted for, what are we missing? Haven't we accounted for everything that we need to?

    I know you have a scientific mind. (That is a good thing) I do not. I am thrilled that you are using your great intelligence to further investigate this. You can only add new knowledge and a perspective that I am not capable of. Thank you again.
  14. Valentijn

    Valentijn Activity Level: 3

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    I don't think adreno was saying that ME/CFS is primarily fatigue, but that many doctors are at risk of incorrectly diagnosing ME/CFS because they focus on the element of fatigue and other symptoms shared by many disorders.
  15. adreno

    adreno 3% neanderthal

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    Yes, this was my point exactly, thanks.
  16. Lou

    Lou Senior Member

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    Uh-oh, I see you are right. Perhaps, he's charitable, will pass it off as brain fog, though in my case it sometimes can more accurately described as a stupid moment.
  17. richvank

    richvank Senior Member

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    Hi, aquarius, Annesse, and the group.

    For PWMEs who are low in amino acids, I do think that taking a free-form amino acids supplement can give benefit in the short term. However, in the longer term, I would favor addressing what I believe are the causes of low amino acids in ME/CFS, i.e. the methylation cycle block and the dysfunction of the digestive system. As many of you are aware, Dr. Kenny de Meirleir has been focusing on the gut issues for many years, and he believes that issues in the gut and the immune system (which is mostly in the gut) are fundamental in ME/CFS. I'm warming up to the possibility that sauerkraut could help with the the digestive system aspects. Here's why:

    First, we know from the baking soda--burp test on many PWMEs that most are low in stomach acid (I think because of low glutathione in the parietal cells that normally produce the acid), and sauerkraut is acidic because of the lactic acid and acetic acid produced by the lactic acid bacteria that are used to make it. Thus, taking sauerkraut might bring all the benefits I have described in the past that result from having stomach acid, which various people have increased using betaine-HCl, Allergy Research Group dilute hydrochloric acid, or lemon juice.

    Second, we know that the digestion of food is not very good in many PWMEs. In extreme cases, some report observing undigested food in their stools. This probably results in part from a poor secretin signal being sent to the pancreas when the food arrives in the duodenum, because of the low acid content of the food mixture coming from the stomach. But it's also known that the exocrine pancreas is very dependent on methylation, so a methylation deficit could also be contributing to low digestive enzyme output by the pancreas.
    Various people have been taking digestive enzyme supplements to try to improve their digestion. As I learned yesterday, and as Annesse has been telling us, the lactic acid bacteria in the sauerkraut produce a variety of enzymes. These bacteria of course use these enzymes to break down the cabbage, but they can also be effective in breaking down other foodstuffs. So by taking some sauerkraut with other foods, their digestion should be helped.

    Third, we know that people with ME/CFS have yeast infections and intestinal bacterial dybiosis. Various people have been taking antibiotics or herbal antimicrobials to try to kill the unhelpful bacteria and yeasts, and have been taking various probiotics in order to replace them with helpful bacteria. The latter include Bifidobacteria, Lactobacillus, and in some cases friendly E. coli. Sauerkraut contains at least several species of lactic acid bacteria, the main one being Lactobacillus plantarum, and the bacterial counts reach 100 million to 1 billion colony forming units per gram. By taking a few grams of sauerkraut, a person could ingest comparable numbers of roughly similar species of bacteria to what is found in probiotics.

    We also know that many PWMEs have leaky gut syndrome. This may be caused by dysbiotic bacteria, lack of sufficient defense of the intestinal wall by secretory IgA (which is usually found to be low in stool testing of PWMEs), gluten and casein intolerance in some cases, low glutathione, and/or low folate, preventing sufficiently rapid formation of new DNA and RNA for cells to replace the short-lived enterocytes and colonocytes. Perhaps the bacteria in sauerkraut can help with some of these factors, at least.

    I continue to be skeptical that sauerkraut can do the whole job in treating ME/CFS, but based on the above and on the responses Annesse has reported that she is receiving, if I had ME/CFS myself, including digestive system dysfunction, I think I would give sauerkraut a try. I think I would also work on lifting the methylation cycle partial block, though.

    Oh, one more thing: I tried to find out if there is good enough epidemiology to say whether the prevalence of lupus might be lower in countries where more sauerkraut is consumed, such as in Germany. Of course, I don't know whether the Germans currently consume more sauerkraut on the average than other nationalities. In any case, the available numbers aren't good enough to tell. There hasn't been a collection of data in different countries that uses a standard set of criteria and standard methods, so the existing numbers really can't be compared. Maybe this could be done on a more regional basis.

    Best regards,

    Rich
  18. Jenny

    Jenny Senior Member

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    Would consuming ready-made sauerkraut be OK (eg out of a jar), or would it be important to make your own?

    Jenny
  19. richvank

    richvank Senior Member

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    Hi, Annesse.

    Reading a little further in your book, I see that you acknowledge that taking sauerkraut is not the whole story, but that you have to build B12 back up, also. I think we are in agreement about the need to do that. I have suggested doing it with the simplified methylation protocol, which uses a sublingual B12 supplement as well as chemically reduced forms of folate and some other supporting supplements, while you have emphasized using a natural foods approach. So I guess we still differ on this, but it looks as though we have similar goals with regard to assisting the biochemistry. Very interesting!

    Best regards,

    Rich
  20. richvank

    richvank Senior Member

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    Hi, all.

    Here's another news flash: Lactobacillus plantarum, which has been found to be the dominant bacterial species in sauerkraut (PMID: 17921264), has been shown to be able to produce both folate (PMID: 12902240) and vitamin B12 (PMID: 19953302). Hmmmm.

    Best regards,

    Rich
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