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Esther Rantzen's daughter had Celiac all along

Discussion in 'General ME/CFS News' started by cigana, Feb 13, 2011.

  1. MDL

    MDL

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    Hi Rich,

    I am pleased to see that you have begun to mention hydrogen sulfide in your posts. It is satisfying to see that my conceptual model demonstrating the potential connection between hydrogen sulfide and CFS is becoming accepted by prominent scientists. When I wrote my hypothesis, I was told that it could take thirty years before my ideas would be understood by the medical community, but already I can see aspects of my work being tested in a number of places. As I noted in my poster at the last IACFS/ME conference, dairy actually produces hydrogen sulfide, as do wine, sugar, and eggs, to name a few. Yeast and mold produce also H2S. And the story continues, from bacteria to the mitochondria. Perhaps we have the makings of a unifying theory, in that it potentially has the ability to explain so many of the findings in CFS (even glutathione depletion through the transsulfuration pathway!).

    One thing puzzled me in your post. Dr. DeMeirleir appears to have embraced my theory as though it was his own, but has he actually demonstrated the production of H2S as an important mechanism in CFS? He said at the 2009 ME/CFS London conference that the results of his H2S tests shown on his slides would be published shortly thereafter, but I have not seen such a publication. Do you (or anyone else reading this blog) know where I can find it? I think it is important that all test results which underlie public statements be published and subjected to critical scrutiny of peer review and random trials if we are to make meaningful medical progress.

    All the best,
    Marian Lemle
     
  2. xchocoholic

    xchocoholic Senior Member

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    Interesting post Mark. As a formerly undiagnosed celiac who still has ME/CFS, I appreciate the time you took ...

    JSYK ... MOST celiacs are undiagnosed still. The last I heard from the NIH a couple of years ago, was that they figured that 97% ... NINETY SEVEN PERCENT ... of celiacs are undiagnosed. AND of the 3 % who are diagnosed, it took an average of 11 years to be diagnosed with celiac disease. The NIH was asked several years ago if they wanted to add the celiac test to the standard testing done by most doctors but decided it wasn't cost effective ... They'd obviously rather pay for SSD and Medicare ...

    Part of the problem is that celiacs will heal from time to time and so their biopsies won't show celiac disease. I posted a video here a few days ago in the hopes that you all could understand this better ... The problem those of us in the GF world are having is that most doctors including the one on this video are still not up on gluten intolerance vs celiac disease. If you listen carefully, you'll hear this doc say how some celiacs don't have blunted villi and yet they have celiac disease. IMHO, This is double talk for gluten affects other parts of the body but were not ready to discuss it just yet ...

    The Gluten File is a great reference for how gluten can affect our bodies ... googling glutenfile will get this for you ...

    BTW ... This info is nothing new. The NIH published info several years ago saying that CFS could actually be from celiac disease. I was NEVER told this though ... I found this link on the web back in February 2007.

    http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

    TC ... x

    PS. I'm not saying here that all CFS is from gluten intolerance just that many of us are intolerant to gluten. I think it's interesting that the NIH noticed a connection in some cases. It's a shame that they didn't go one step further and insist that patients are tested for celiac or gluten intolerance instead of just accepting those illnesses listed.

    Many of us can't handle other common foods or chemicals either and this points to leaky gut. Removing as many toxins as possible out of my life and addressing my nutritional deficienies has helped tremendously but hasn't cured my CFS (OI and PEM mainly now). But, one slip up and I get those symptoms related to that toxin once again ...
     
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Refractory Celiac -- New Solutions

    Did you know that some people with celiac disease (the condition that makes people unable to digest the gluten found naturally in wheat, rye and barley) are unable to control their symptoms even with faithful adherence to a gluten-free diet?

    The reason why thats so is a puzzle doctors and researchers are working to solve. While theyre not ruling out the possibility that some or even all of these patients are unknowingly consuming gluten, even though they think they are adhering to a strict gluten-free diet, many doctors believe that another factor is at work as well. (For more on the topic of gluten contamination in supposedly "safe" foods, see Daily Health News October 5, 2010, "Gluten-Tainted Foods".) It appears that the damage done to the digestive systems of these patients doesnt heal when they stop consuming gluten -- unlike most people with celiac disease, these unlucky folks continue to experience symptoms, and ultimately a higher risk for other serious illnesses, including cancer.

    This condition is called refractory celiac disease. The good news is that this problem is rare, affecting only about 1% of people with celiac disease. Not only that, but inroads are being made in treating this unusual condition. Specifically, researchers have identified a new class of drugs to treat refractory celiac disease that is showing great promise -- I will tell you all about it in a minute, but lets first talk about how this happens, because few people are aware that this problem even exists.

    Blame the Patient?

    When patients with celiac disease continue to suffer their miserable symptoms (including frequent bouts of diarrhea and flatulence) even after changing their diets, doctors tend to assume that they are still ingesting gluten from somewhere. As Daniel Leffler, MD, MS, founding member of the Celiac Center at Beth Israel Deaconess Medical Center , Boston , and coauthor of the book Real Life with Celiac Disease, told me, sticking to the diet can be "really, really hard." Thats not to say that these folks are giving in to temptation and eating pastries, pasta and bread, but rather because gluten lurks in many surprising foods including, as I mentioned above, some foods that are labeled to be free from gluten.

    Its a serious issue that goes far beyond the discomfort and inconvenience of the symptoms -- refractory celiac disease is associated with lymphoma and any number of other potentially deadly illnesses. Since the condition remains unusual, theres still much to be learned about diagnosing and treating this problem, Dr. Leffler told me.

    Treatment options focus on controlling inflammation:

    Corticosteroids, which suppress the inflammatory response, have been the first-line treatment, but they have numerous troubling side effects, including dependency, immune suppression and bone thinning.

    A small study of refractory celiac patients at the University of Virginia in Charlottesville reports that thiopurines (immunosupressants) may be effective. Dr. Leffler told me that he agrees that thiopurines are useful and that they let patients avoid some of the problems associated with steroids, but they too have potential side effects including the risks to the rest of your health when your immune system is suppressed, as well as liver and pancreatic damage, so patients taking them require close monitoring.

    Now theres yet another possibility -- a drug called mesalamine (similar to aspirin), which controls inflammation and was developed for inflammatory bowel disease and Crohns disease. This seems to be safe for refractory celiac, but the medication takes longer to work than the others and Dr. Leffler says there is still much to be learned about mesalamine for refractory treatment.

    Natural Treatments


    I asked Daily Health News contributing medical editor Andrew L. Rubman, ND, about this problem, and he told me that some physicians have had success treating patients with refractory celiac disease with willow bark extract, which contains salicin, the compound upon which aspirin and mesalamine are based.

    Individuals who have, or suspect that they have, refractory celiac disease should seek out an experienced celiac team whenever possible, according to Dr. Leffler. A list of celiac centers can be found at www.bidmc.org/celiaccenter. And meanwhile, you can be sure that Ill continue to follow this story -- its an important one.

    Source(s):

    Daniel Leffler, MD, MS, founding member of the Celiac Center at Beth Israel Deaconess Medical Center , Boston , coauthor of Real Life with Celiac Disease (AGA).
     
  4. Glynis Steele

    Glynis Steele Senior Member

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    And let's not forget that in schizophrenia, patients should be investigated for celiac, as celiac can present with neurological changes. So although they might have a gut disease, this can be expressed by changes in behaviour. And it was only recently a study proved IBS was caused by gut bacteria, another condition which has been said to be "stress" related, or all in the head of the sufferer. And there is a study where antibiotics were successful for autism, but this is a small study. Also there is a study where the ketogenic (no carbs) diet was successful for autism. The question to me is, is the gut more involved than is currently thought? I think so.

    Glynis x
     
  5. rlc

    rlc Senior Member

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    I hope Esther Rantzen now uses her position of influence to push for everyone having to be tested for Celiac before they can be given a diagnosis of CFS as is recomended by the likes of Dr Mirza, one thing that hasn't been mentioned yet about Celiac is that it effects one in every one hundred Caucasians. Because the symptoms of Celiac and those attributed to CFS are so similar, I would imagine the numbers of people that are being misdiagnosed are very large!! How if CFS is supposed to be a diagnosis based on the exclusion of all other diseases, can people be being given this diagnosis without everything being excuded, what an insane situation!!!!!!!

    Allthe best
     
  6. richvank

    richvank Senior Member

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    Hi, Marian.

    Yes, your H2S thinking seems to be catching on, at least among the "cognoscenti" :)-), and it may be the key to linking Dr. de Meirleir's observations and emphasis on the gut issues to my GD-MCB hypothesis. Before you get too excited, though, be aware that neither Dr. de Meirleir's nor my ideas are very widely accepted within the "orthodox" CFS research community. We still have a major uphill fight ahead of us. What's going on in Belgium vis-a-vis the governmental response to CFS treatment is particularly troubling, I think, and I hope it doesn't cause problems for Dr. de Meirleir.

    It seems to me that the mechanism Prof. Deth described could contribute to glutathione depletion, because cysteine is
    usually the rate-limiting amino acid for the synthesis of glutathione, and about half the cysteine needed
    by the human organis has been reported to come directly from the diet, the other half being produced from methionine
    that also comes from the diet, via the methylation cycle and the transsulfuration pathway. Inhibition of cysteine absorption by the
    gut via the mechanism he described would seem to impact glutathione synthesis strongly, and this may be one of the
    initiators that can deplete glutathione and contribute to bringing about onset of CFS in some cases.

    Initially, I had thought that the hydrogen sulfide produced in the gut came exclusively from sulfate-reducing
    bacteria. However, I now understand that this is not correct. Sulfate-reducing bacteria are found in
    the human gut, but perhaps most of the hydrogen sulfide produced in many cases comes from bacteria that
    ferment other sulfur-containing species, such as cysteine. This would be a two-edged sword. Not only would
    it produce hydrogen sulfide, which can overwhelm the sulfide oxidase in the cells lining the gut in high enough
    quantities, and thus enter the blood and produce deleterious effects in the cells of the body, but also it would deny the cysteine supply to
    the body, thus depleting the critical substance needed to make glutathione.

    It seems to me also that this mechanism could contribute to a rise in the population of dysbiotic bacteria in the
    gut that are capable of producing hydrogen sulfide from cysteine, which would tie in with your thinking and
    Dr. de Meirleir's observations. Note from the abstract below that at least one type of Streptococcus can produce
    hydrogen sulfide from cysteine. Dr. de Meirleir has emphasized the importance of both Streptococcus and
    enterococcal bacteria in CFS.

    Maybe this is a possible link between the pathogenesis mechanisms that Dr. de Meirleir has discussed, based in part on your thinking recently, and focused for a long time in the past on the gut issues, and the glutathione depletion--methylation cycle block mechanism that I have proposed. He and I have been at odds, in a friendly way, for several years over this difference between his emphasis on the gut issues, and my emphasis on glutathione depletion and the partial methylation cycle block. Maybe this will pull things together.

    As far as I know, Dr. de Meirleir has not gotten a paper out about H2S yet, but as far as I know, he still plans to do so. As you may know, he is a very busy guy! Note that he is also emphasizing the role of D-lactate in the pathophysiology of CFS, produced also by dysbiotic bacteria in the gut.

    It IS nice to see some of these things coming together.

    Best regards,

    Rich


    J Periodontol. 2009 Nov;80(11):1845-51.
    Hydrogen sulfide production from cysteine and homocysteine by periodontal and oral bacteria.
    Yoshida A, Yoshimura M, Ohara N, Yoshimura S, Nagashima S, Takehara T, Nakayama K.
    Division of Community Oral Health Science, Department of Health Promotion, Kyushu Dental College, Kitakyushu, Japan. akihiro@kyu-dent.ac.jp
    Abstract
    BACKGROUND: Hydrogen sulfide is one of the predominant volatile sulfur compounds (VSCs) produced by oral bacteria. This study developed and evaluated a system for detecting hydrogen sulfide production by oral bacteria.
    METHODS: L-methionine-alpha-deamino-gamma-mercaptomethane-lyase (METase) and beta carbon-sulfur (beta C-S) lyase were used to degrade homocysteine and cysteine, respectively, to produce hydrogen sulfide. Enzymatic reactions resulting in hydrogen sulfide production were assayed by reaction with bismuth trichloride, which forms a black precipitate when mixed with hydrogen sulfide. The enzymatic activities of various oral bacteria that result in hydrogen sulfide production and the capacity of bacteria from periodontal sites to form hydrogen sulfide in reaction mixtures containing L-cysteine or DL-homocysteine were assayed.
    RESULTS: With L-cysteine as the substrate, Streptococcus anginosus FW73 produced the most hydrogen sulfide, whereas Porphyromonas gingivalis American Type Culture Collection (ATCC) 33277 and W83 and Fusobacterium nucleatum ATCC 10953 produced approximately 35% of the amount produced by the P. gingivalis strains. Finally, the hydrogen sulfide found in subgingival plaque was analyzed. Using bismuth trichloride, the hydrogen sulfide produced by oral bacteria was visually detectable as a black precipitate.
    CONCLUSIONS: Hydrogen sulfide production by oral bacteria was easily analyzed using bismuth trichloride. However, further innovation is required for practical use.
    PMID: 19905954 [PubMed - indexed for MEDLINE]
     
  7. Wayne

    Wayne Senior Member

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    Naturally Curing Celiac Disease Using Holistic Naturopath Techniques

    Hi All,

    I was wondering how long it might take to recover from Celiac's Disease, especially if it's been a long-standing issue. I ran across a very good comprehensive article at the following link:

    Naturally Curing Celiac Disease Using Holistic Naturopathic Techniques

    The following section gave me the information I was specifically looking for:

     
  8. rlc

    rlc Senior Member

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    Hi Wayne, like the article you quoted says the length of time for recovery differs with each patient, but another point that is often overlooked in treatment is that because Celiac causes vitamin and mineral deficiencys such as B12, iron Vitamin D etc, patients will recover quicker if they are aggresivly suppliment to resolve these issues, instead of waiting for the body to slowly relace the losses through eating. This is a particular problem with B12 and Vitamin D because the referance ranges used by most labs in the world for these have been scientifically proven to be way to low, so people get tested to see if there levels are recovering and are told that there fine, when the patient actually still has B12 and or vitamin D deficiency!

    All the best
     
  9. xchocoholic

    xchocoholic Senior Member

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    Hi Wayne,

    I'm not a celiac expert but I found several questionable suggestions in that article ... here's just one ...

    Sadly the SCD diet is being promoted as a cure all when in fact, many people can't handle those carbs or the foods recommended. Because my pancrease produces too much insulin, I really think I would've been hospitalized with blood glucose problems within a day or so ...

    I really hate it when people promote diets this way. We're all different and need to keep in mind how our bodies work. Same goes for supplement "cures". Why do they insist on calling each and everyone of them "THE CURE" ... : ( ... we'll never get this mess straightened out until they start considering each person's biochemistry. (End of today's rant) ... lol ...

    tc .... x
     
  10. anne_likes_red

    anne_likes_red Senior Member

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    Thats a very strange version of the Specific Carbohydrate Diet. (Wholemeal flour for celiac????)

    No flours, grains or complex carbs are even allowed on the SCD.

    I've seen the SCD recommended as a potentially useful "intervention" (voted the single most effective biomedical intervention in the parents survey by the Autism research Institute a few years back), and as a tool for managing Crohns, and celiac in some cases, but like you I hate seeing things promoted as a universal cure all. Better to see things suggested as worth a trial.
     
  11. Mark

    Mark Acting CEO

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    It is indeed an insane concept if you think about it; this idea of a "diagnosis of exclusion" has never made sense to me - except if I interpret is as meaning "exclusion from the healthcare system", in which case it makes perfect sense...


    The suggestion of a diet that allows whole wheat, brown flour etc doesn't ring true for me either - I can't handle gluten either, along with a whole load of other things, and whole wheat is just about the worst thing for me.
     
  12. Wayne

    Wayne Senior Member

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    Hi Ric,

    Couldn't agree with you more. One of the reasons I liked the article on first browse was that it addressed different supplements and natural healing modalities to help the healing process along, instead of just waiting for time to do it all.

    Wayne
     
  13. Wayne

    Wayne Senior Member

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    No Whole Wheat for Celiacs

    Hi X,

    Everybody needs a good rant once in a while, don't you think? I'm just happy I could supply you with some good material for you today; someday I may need the favor returned. :)

    When I first did a quick browse of the article, I noticed they were recommending various natural means to help heal the GI tract. I also noticed they said there are likely other contributing factors besides gluten. This all made sense to me.

    I DIDN'T notice they were recommending eating whole wheat! :eek: I find that suggestion quite amazing, and of course, makes one wonder about the credibility of the whole article. But like so many imperfect articles I run across, I try to separate the wheat from the chafe, and decipher what makes sense to me and what doesn't.
    Come to think of it, I tend to regard people in a similar manner. :angel:;)

    Wayne
     
  14. rlc

    rlc Senior Member

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    Ha nice one Mark exclusion from the healthcare system, I think it their way of stopping people proving them wrong, if you can't get tested you can't prove that you've got one of the diseases that are supposed to be excluded. Insane!!!!!!!!!!!!!!
     
  15. rlc

    rlc Senior Member

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    Hi Wayne, you'd think the medical profession would of worked it out years ago that suplimenting people who have an illness that causes nutritional dificiencies would be a good idea! At times i really do wonder what they actually do at med school apart from excesive drinking and not paying attention to what is their being taught.

    All the best
     
  16. Wayne

    Wayne Senior Member

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    Hey Ric, whether intentional or otherwise, what I think they learn very well is how to put on snug fitting blinders to keep them from having to do very much critical thinking. It's like; we've stuffed our heads with all this "scientific" information, please don't bother us if you would have us think beyond this. If you do, you may be sorry. We'll just "pronounce" your illness psychosomatic.

    Too bad they don't heed the words of a prominent dean of a prestigious medical school I heard about a few years ago. He told the graduating class that within 5 years, they would discover that half of what they learned in medical school is not accurate. Unfortunately, he couldn't tell them which half it was. Sounds like a wise man to me.

    Wayne
     
  17. xchocoholic

    xchocoholic Senior Member

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    Hi Wayne,

    I'll try to return the favor someday ... ; ) .... what got me about this article was all the misinformation. I'm a member of a celiac support and just from what I've seen, there and online, is that most celiacs are "OK" once they switch to eating gluten free processed foods. Meaning, their digestive issues, fatigue and other small problems are gone. There is never any talk about candida and these people have healed. It really is just that simple for some people ... and age of diagnosis doesn't seem to matter.

    BUT ... then there's those of us who continue to struggle even though we're as GF or moreso than the majority. Especially considering that most of those GF processed foods still have some gluten in them. Most of us have other food intolerances, candida, parasites, nutritional deficiencies and possibly some damage that can't be healed.

    According to my last endoscopy, my celiac disease is gone and yet here I am too weak to function. I asked my GI and he told me that he can only see a small portion of my gi tract so he has no idea what's happening elsewhere ...

    Just my 2 cents ... When it comes to medical care for PWCs, I honestly think that our doctors are just clueless ... They only know what they've been taught / trained to do. Just look at Dr. OZ ... He's a great guy but he's guilty of recommending supplements, drugs or surgery for most medical problems too. I rarely here him talk about looking for the cause. The interview with Dr. Berkson concerning LDN explains this ... Doing a search on Berkson here should bring that up ...

    IMHO, unless we deal with the root causes of chronic illnesses like CFS/ME, FM, MS, etc etc etc ... then we're wasting patients time and lives. We know already that the majority of our immune system is our digestive tracts so to me that's to most reasonable approach ...

    tc all ... X
     
  18. xchocoholic

    xchocoholic Senior Member

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    I'm back ...

    There's one more thing about diagnosing CFS that has me confused. In the last 5 years, Medicare has paid for my stool testing (food intolerances, candidiasis, parasites, dysbiosis, etc), nutritional deficiency tests (most of them not just 1 or 2) and hormone tests (testosterone, estrogen, adrenal hormones, etc ) ... and these tests are the ones that really show what's going on in my body.

    My antibodies for gluten won't show in a serum test unless I eat gluten and that's not going to happen.

    BUT, why didn't my doctors check for all those nutritional deficiencies ? We have a lot more nutrients than B12, iron and D that we should be concerned about. The nutritional data base says we need them all ... :confused:

    So why wasn't this done 21 years ago when I first got sick ? What did the Mayo clinic look for when I went there in 1992 ? I can tell you it wasn't nutritional deficiencies and celiac disease ...

    gotta get busy here .. tc .. x
     
  19. Snow Leopard

    Snow Leopard Senior Member

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    Because they don't know how to do their job properly. One of the doctors I see has found that cases of scurvy are not uncommon in my town!
     
  20. ukxmrv

    ukxmrv Senior Member

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