Too much emphasis on celiac / gluten not enough on leaky gut

Discussion in 'Fibromyalgia Main Forum' started by xchocoholic, Apr 9, 2009.

  1. xchocoholic

    xchocoholic New Member

    By focusing so much of the public and medical professionals attention specifically on celiac disease and gluten intolerance many of us are missing the bigger picture. As in getting to the root cause of all of this ... functional medicine calls this leaky gut and traditional doctors call this gut permeability.

    Until the medical community recognizes that gluten intolerance is just a symptom of the REAL problem for many, millions will go on being sick with one or more of the co-existing conditions related to food intolerances / leaky gut ...

    Right now there are very few doctors willing to treat leaky gut because of how complicated it is between the food intolerances, viruses, heavy metals, nutritional deficiencies, candida, etc that are the result of having a leaky gut.

    DAN doctors and a few others do this but they are very expensive and hard to come by. IMHO though, if I can learn as much as I have with my cognitive problems, anyone can.

    And while the increase in all the GF, CF, SF, etc foods out there is great, many are missing out on the fact that, according to functional doctors, if they fix their guts they won't have all of these intolerances anymore ...

    The allergies may stay with us for life, but most of this appears to go away once the digestive tract is healed. Some even say that gluten intolerance / celiac disease can be eliminated and we can eat gluten again. I'm not trying this anytime soon .. but maybe someday ... like when I'm 90 ... : )

    Granted for some removing gluten will fix their leaky guts, but for how long ? If a person has a tendency towards villi damage, what will it take to come along and wipe it out again. Common causes of leaky gut are viruses, nutritional deficiencies and medication.

    And cross contamination of gluten is such a problem that I can't see most of us not getting a significant amount of gluten either from processed foods, meds or supplements.

    I wasted a lot of time after learning about how gluten, etc affected me by learning all those GF terms and how to cook GF grains that I didn't realize were bad for my hypoglycemia and candida problem.

    So try not to get sucked up in this. IMHO, we have a worse case of leaky gut than most celiacs and need to be treating leaky gut not celiac.

    You can look at the DAN protocals for an idea of what all we need to address. "Healing the 4 A's" by Dr. Bock is an excellent, easy to read book on how DAN works.

    My story ...

    I've been working on this mostly on my own since 2005 and have made significant progress, but I still have some issures. I feel good at rest and have been since 2008. My nuero symptoms are gone unless I get CC'd with gluten. I had ataxia(which I believe was actually gluten ataxia), myoclonus, brain zaps, brain fog, muscles twitches esp in my face, etc.

    So all I have left is my general fatigue, hypoglycemia, intermittent muscle weakness and orthostatic intolerance. I've just started being able to digest supplements and drink lemon water in the am so I'm hoping this will help. Oh and as of last week, I appear to be ok without carbs to keep my blood glucose levels up so I'm on the candida diet and taking candidase and virastop 3 times a day. KOW

    Best wishes for all of you who are dealing with this DD ... Marcia

    PS. I forgot to mention that I just had a repeat EGD and colonoscopy in March and my doc told me that everything looks NORMAL now ... I had apparent healing from villi damaged from either celiac or NSAIDS, hiatal hernia, diverticuli, GERD, colon polyps and hemeroids on my previous tests from 2005-7.

    good news for sure but I'm not sure how it all relates to healing from leaky gut ...
    [This Message was Edited on 04/09/2009]
  2. ruti

    ruti Member

    I am sorry to hear you are suffering so much.
    There is some confusion of terms in your writing - celiac desease is not related to leaky gut and it is for life and you can not strat eating gluten when you resolve the leaky gut. Did you get a blood test diagnosis for celiac? was it positive?
    Colonscopia is not testing celiac - the villis that are flat in celiac are in the small intestens and it is checked in another exam - endoscopia. The colonscopia is checking the large intestene.

    Did you get a diagnosis for candida?
    When I had candida what helped me the most was anti fungal medications - the diet and supplaments were not enough.

    Leaky gut is a really not an easy problem and I am not able to solve it for years.
    After all you describe it is a good idea to get as much toxins out of the body (the candida leaves terrible toxins when it die and the die off effcts - you can feel pretty sick from them while you are in the healing process).
    I suggest doing colonics - it helps getting toxins out.
    For closing the leaking gut my nutritionist suggested a product powder
    "perm a vite" by nutncology. it includes L Glutamine which helps fix the lining and more things in it.

    I have a low Iga ( a measure of the immune system) - hypo-gamaglobolinia that can efect the mucus and lining and I think it has to so with my leaking gut.
    A lot of the symptoms will clear when you get over the candida - the head aches, brain fog and much of the muscle cramps and pain.
    Take some magnesium - it helps the muscles cremps and pain.
    Take multi- enzemes in each meal and a good probiotics.
    Many times the parasites are present because of not acid enough enviroment - adding betaine Hcl to make the gut more acid - it killd candida as well. (my nutritionist checks the acidity by litmus paper in the mouth and the acidity in the urine (I don't know to do it myself).
    Even if you don't check it most of us suffer from too alkaline gut (not enough acidity) and the parsites like not acid places!! so taking some Hcl can be very helpful.

    I hope you get better soon.


  3. xchocoholic

    xchocoholic New Member


    Thanks for replying. My understanding is that celiac is the most well known form of leaky gut. When those who are gluten sensitive eat gluten it destroys the villi in their intestines causing leaky gut. But others get leaky gut from NSAIDS, etc. The article above lists all the ways it happens.

    thanks for the well wishes. I'm actually doing much better than I was prior to 2006, so it's all good ... : ) Most of my brain fog, ataxia, myoclonus, etc was gone after about a year on the GFCFSFEFCF + chemical free diet back in 2005. Gluten was a big problem for me.

    I'm mostly dealing with OI now which just means my BP refuses to stay up when I'm upright. So far laying down regularly and using plenty of salt in my diet helps. It's a pain in the rear but it works ... It could turn out that gluten has permanently caused damage to the part of the brain that regulates BP so I could be stuck with this ... I just have to wait and see.

    From what I've read, many naturopaths / functional doctors believe that celiac aka leaky gut can be healed and that you can eat gluten again. I'm not planning on it but that's what I've read. We see this in the autism community though ..

    I didn't need any betaine HCL but I understand some do. Rich has a test for it .. something about drinking a little baking soda in water and measuring how long it takes you to burp. More than a few minutes or no burping means you need it ...

    I've been working on my candida issues and have been symptom free for years but I'm doing a candida detox just in case. So far it doesn't appear to be a big issue for me anymore since my die off is mild. I used garlic, pau d'arco, candidase, virastop and diet.

    Interesting topic .. Marcia
  4. ruti

    ruti Member

    hi Marcia
    I read a lot on the celiac and we talked to doctors in the field and are connected with the local celiac organization. From everything I know today - celiac at this point of the research is for life and it is not allowed in any time to eat gluten again. I haven't heard that it causes leaky gut. THe GF diet allows the person to heal. My daughter's blood tests and GI tests are fine since she is on the diet.
    You are more likely to have the leaky gut from the candida that can be agressive in penetrating the linining.

    I am very interested in your BP condition. What is the OI stands for?
    We just found out of a similar condition with our 19 years old daughter. They caleed it Vezo vegal event (vaso depressor
    she has "spinning head" and feels she is fainting and it did happened a few times.
    they did a tilt test were they moved the bed from lying to standing and she had a very quick drop of blood presure and the documented the pre fainting event.
    we are still in checking and need to see the doctor on that.
    They explained it by the vessals in the legs are getting widers and not enough blood is getting to the brain.
    Is that what you have?
    Is that related to celiac? this daughter was not diagnosed with celiac
    She is a soldier in the Israeli army (a mandatry for all boys and girls) and last night she needed to be on guard duty but had this spining effect - she attributed it for being tired and she had to find a doctor who gave her permission to not do the guard duty at night.
    This is so interesting that you write about it now!!
    does it get better over time?
    Be well Ruti
  5. xchocoholic

    xchocoholic New Member

    Unfortunately there is a lot of info that the specialists in any field don't know. That's one of the things I love about the internet. We can keep up on the latest research and not have to depend on them. IE ... Dr. Hadjivassilou proved back in 2002 that gluten can affect the brain without causing any damage to the intestines. I would've thought the medical community would've been interested in this but most still don't know about it.

    I'm sure you'll find info here that explains how gluten causes celiac aka leaky gut in one of these articles. Otherwise, just google zonulin and celiac.

    Here's a link to a group of articles about gluten ...

    Dr. Fasano is working on educating the public about gluten sensitivity versus celiac disease.

    The Mayo Clinic just released some interesting info on celiac too and can be found at their website. What I found most interesting is that they say that some celiacs have no symptoms.

    OI is a form of dysautonomia. My favorite article on this is by John Hopkins (JH).

    But to fully understand this condition, it's best to google dysautonomia and read everything you can.

    Your daughter can test herself for OI by using a BP monitor. There are others ways to have this tested but this will work. Have her take her BP after laying down for an hour. Then have her take it again after standing up for 2 + minutes. If her BP drops 20 pts within 2 minutes (or longer in some cases), she has just failed the poor man's tilt table test (PMTTT) and would be diagnosed with orthostatic intolerance.

    Some doctors will do this in their offices but the problem with this test is that the doctor never asks the patient how much salt they've just eaten or if they are dehydrated ... I passed my last PMTTT because I ingested 1/4 tsp of salt just prior to having it done ...

    JH suggests salt loading as step one in treating OI. I've been doing this since May 2008 and while it fixes the problem immediately, the symptom comes right back in a few hours. I'm still looking for a way around this .. I've seen heavy metals, low blood volume and low omega 3s listed as causes so far ..

    HTH .. marcia

    JSYK ... I'm not a doctor nor do I have medical training. I'm merely expressing what I've learned over the last 3 1/2 years via Google and my own experiences. To fully understand this condition, it's best to do the research on your own and come to your own conclusions. That's why I try to provide links to reliable sources.[This Message was Edited on 04/10/2009]
    [This Message was Edited on 04/10/2009]
  6. SnooZQ

    SnooZQ New Member

    >>>> The allergies may stay with us for life, but most of this appears to go away once the digestive tract is healed. Some even say that gluten intolerance / celiac disease can be eliminated and we can eat gluten again. I'm not trying this anytime soon .. but maybe someday ... like when I'm 90 ... : ) >>>>

    IMO some forms of gluten intolerance MAY allow a person to once again safely ingest gluten, once the gut is healed. For the sake of clarity, I refer to these as "gluten sensitivity." But I think true celiac disease is in a different category of illness than the more common gluten sensitivity.

    I take exception to the idea that once a true celiac's gut is healed, that it is OK for that person to once again eat gluten.

    Celiac is NOT an allergy. It is an autoimmune disease with a number of predisposing genetic abnormalities. The gut CAN heal in most cases with gluten-free diet. However, resumption of gluten ingestion puts the celiac at risk for relapse, as well as at-risk for the associated general health problems which include higher risk for certain gut lymphomas.

    Zonulin gating defect is only one aspect of the genetic abnormalities of celiac disease. Even Dr. Fasano's zonunlin blocker drug (still in FDA test mode) doesn't cure celiac.

    IMO, true celiac disease usually includes leaky gut up front when diagnosed, but the disease is much more than just leaky gut.

    On the other hand, if someone's villi have been damaged due to NSAID use only, and IF he/she does not have the genetic predisposition to celiac, it may be possible to resume gluten once the villi have healed.

    In addition, some forms of IgE food allergy to gluten-bearing grains require life- long dietary adherence to maintain life & health.

    BOTH chronic fatigue and celiac disease are complex, often misunderstood diseases. There are some people who DO have both true celiac & CFS; for those people, likely lifelong adherence to GF diet will be an important part of their treatment regimen.

    Best wishes.

  7. ruti

    ruti Member

    Thanks a lot. Are you familiar with the terms vaso vegal for youe condition?
    My daughter did the tilt test and this is exacctly what happend - the BP droped dramatically in 2-3 minutes and she almost fainted.
    Is adding salt have other problems?
    Can you tell if there are triggers that make it worse (like lack of sleep? or standing for a longer time?
    Is there anything that helps besides the salt?

    I know that celiac is a serious desease and it can be related to many problems especially when mis diagnosed. My dauther with celiac haven't noticed a thing until age 18 and she was lackily diagnosed by a smart doctor even though there were no clear symptoms.

    Thanks for sharing your experience/ If you have more tips for this BP condition - it is very helpfull - we just start to cope with it.
    Thanks Ruti
  8. xchocoholic

    xchocoholic New Member

    I'm not convinced yet that celiac can be reversed but this Dr. Haas was ...


    "In Breaking the Vicious Cycle: Intestinal Health Through Diet, author Elaine Gottschall presents a new model for healing digestive disorders with an approach called the Specific Carbohydrate Diet. Perhaps the most controversial aspect of the book, however, is Gottschall’s revisioning of celiac (or "coeliac") disease.

    History of the Celiac Diagnosis

    In an addendum to the book, titled “The Celiac Story,” Gottschall presents the history of the celiac diagnosis and discusses a breakthrough that linked celiac symptoms to certain complex carbohydrates.

    By the late 1940’s, Dr. Sidney Valentine Haas was well-known for his treatment of Celiac patients with the Specific Carbohydrate Diet, a dietary plan that eliminates the indigestible (to a celiac) carbohydrates in grains, sugar, and milk. Without constant aggravation from these specific carbs, the intestine can heal itself within as little as a year, relieving all sign and symptoms of celiac and other intestinal disorders.

    Despite success with his patients and some acclaim, Dr. Haas’s theory of celiac disease was overruled by a 1952 Lancet report (based on only ten test subjects) suggesting that gluten protein intolerance might be the “real” culprit in celiac disease.

    Gottschall suggests that the simplicity of the solution was a factor in the medical community linking celiac disease, up to the present day, with gluten intolerance.

    Why “Gluten Intolerance” is Not Good Enough for Gottschall
    Gluten intolerance is not really enough to explain celiac disease, since symptoms do not disappear when gluten is eliminated from the diet. In some cases, avoiding gluten restores health and improves digestive symptoms. However, according to Gottschall, it does not result in healing of the intestinal wall.

    Even celiac patients who avoid all gluten continue to demonstrate deformed cells in the intestinal wall - a signal that something in the body is still out of balance.

    By avoiding starches and the polysaccharides (complex sugars) that aggravate celiac and other intestinal conditions, the intestinal wall is actually able to heal itself. Cells will be healthy and test normal after a period of one to five years on the diet.

    Testing for Gluten-Induced Enteropathy Celiac Disease
    Gottschall also criticizes the tests used in diagnosing celiac disease. She believes that the results of the intestinal biopsy tests used to diagnose celiac are inconclusive. The flattened or blunted appearance of intestinal cells that is key in diagnosing gluten intolerance also occurs in other conditions, or it may be due to any number of factors in the diet.

    Gottschall also comments on the variety of diagnoses given to those with the same symptoms as celiac patients: “idiopathic (from unknown causes) diarrhea, tropical sprue (diarrhea of the tropics), non-tropical sprue, steatorrhea (fat in the stool), failure-to-thrive syndrome, or malabsorption.”

    Despite identical symptoms, the difference between these patients and a “true celiac” is the results of a (potentially flawed) biopsy - resulting in entirely different treatments for what may be the same disease.

    If Not Gluten, Then What?
    According to the research of Dr. Haas and his son, Dr. Merrill P. Haas, the trouble in celiac disease is not gluten, but sugar: certain complex carbohydrates whose structure makes them difficult for the digestive system to break down. These disaccharide and polysaccharide sugars are left unabsorbed in the intestine, leading to bacterial overgrowth and damage to the intestinal wall.

    Some experts have suggested that it might even be the undigested sugars that cause gluten intolerance.

    Gottschall’s Solution: Dr. Haas’s Specific Carbohydrate Diet
    Whether the origin of celiac is poor digestion of carbs, or gluten intolerance in fact, Gottschall has found success with patients using the Specific Carbohydrate Diet developed by Dr. Haas, the same diet she used to cure her eight year old daughter’s “incurable” ulcerative colitis. The diet is entirely gluten-free, as well as avoiding specific sugars.

    For more information about the Specific Carbohydrate Diet, see Breaking the Vicious Cycle.

    Read more: Gluten, Carbs and Celiac Disease: Gottschall Challenges the Treatment of Coeliac as Gluten Intolerance -"


    It wouldn't be the first time the medical community has made a mistake on how an illness is diagnosed. Look at us ... and autism ... and HRT for menopausal women ...

    And of course we know by now that gluten isn't the only thing that can cause our villi to be flat. My EGD report actually said that I was either healing from celiac disease of damage by NSAIDS ... None of the celiacs I've read about or met are being told to stop taking NSAIDS though ...

    Good discussion .. thanks... marcia

  9. xchocoholic

    xchocoholic New Member

    Salt is good for our bodies and we need some everyday. You can google sodium deficiency to get the particulars.

    The only problem I remember being associated with salt is high BP ... oh and I learned the hard way to make sure it was dissolved in my water prior to drinking it. It was tearing up my stomach if I didn't .. I forgot to mention that we need plenty of water too ...

    I'm still in the process of defining what makes it better or worse. Certainly any upright activity aggravates the condition and laying down for 20 - 60 minutes every 3 or so hours eliminates this problem for me, but this is all I've figured out. I recently added more omega 3 to my diet to see if that helps too.

    The article by JH recommends physical therapy and medications too ... PT really didn't make any difference for me though and I haven't tried any meds yet ...

    HTH .. Marcia

    PS. I forgot to add this article on zonulin and celiac / leaky gut.

    [This Message was Edited on 04/10/2009]
  10. ruti

    ruti Member

    Marcia - Thanks so much - you give much new information to me that I need to learn more both on celiac and the BP condition.
    I hope there is no connection between my health problems and each of my 3 daughters health problems!!
    I will read the articles in the links you provided here. Thanks Ruti
  11. xchocoholic

    xchocoholic New Member

    Ruti .. glad I could help.

    Here's the best article I've found so far on zolulin, celiac and leaky gut ... Marcia,-and-Colitis-Linked-to-Altered-Gut-Permeabilit&id=406814

    Leaky gut syndrome:

    Leaky gut syndrome is a term often used in complementary or alternative medicine circles and by the lay public that is really describing a known entity termed increased intestinal permeability. Gut permeability is important for health and prevention of disease. The intestine is lined with a single layer of epithelial cells, called enterocytes in the small bowel and colonocytes in the large bowel or colon. These epithelial cells both constitute the intestinal barrier and the digestive and absorptive lining of the gut.

    Intestinal villous and microvilli increases absorptive area:

    The small intestine lining has projections called villi that dramatically increase the surface area of the intestine. Each villous is lined with a single layer of enterocytes and goblet cells. The enterocytes of the small intestine have projections on their surfaces known as microvilli where digestive enzymes reside.

    Tight junctions prevent leaky gut:

    The cells are joined to each other by tight junctions or zonula occludens that form a barrier to fluid and proteins except when permitted by signals that open up the spaces between the cells, the paracellular space. Abnormal tight junctions result in increased intestinal permeability or what may be called a leaky gut. This altered intestinal permeability or barrier function is implicated in several diseases, especially celiac disease and the inflammatory bowel diseases ulcerative colitis and Crohn’s disease.

    Occludin, claudin and zonulin proteins:

    Occludin and claudin are structural proteins that maintain the tight junctions or zonula occludens. These proteins are regulated at least in part by another protein, zonulin. The structure of the tight junctions is also known as a cytoskeleton.

    Leaky gut can occur without visible or microscopic signs:

    Obvious visually apparent defects of the lining of the intestine or mucosa such as ulcerations and erosions or atrophy are associated with increased intestinal permeability but ultra structural studies have shown that areas of the lining can have gaps in the intestinal barrier. That is, your gut can be leaky though it may look normal visually during endoscopy or even on plain microscope examination of biopsies.

    Gluten can cause leaky gut without celiac disease:

    Chronic gluten exposure has been shown to activate zonulin resulting in increased intestinal permeability (or leaky gut) even in the absence of celiac disease. Intestinal permeability with malabsorption has been described in celiac patients and their relatives who don’t have atrophy of the intestine on biopsy but only increased inflammatory cells known as lymphocytes or increased intraepithelial lymphocytosis (IEL).

    Lymphocytic enteritis may be the earliest microscopic sign of leaky gut:

    Lymphocytic enteritis is a relatively new term for this small intestine biopsy finding. Since lymphocytes release chemical mediators such as tumor necrosis factor (TNF) it makes sense that increased numbers of lymphocytes in the villi releasing TNF can result in a leaky gut, malabsorption symptoms and increased risk of celiac disease, Crohn’s, and colitis, especially in genetically predisposed individuals. Moreover, if altered gut bacteria and yeast levels are present the risks appear to be higher.

    Tumor necrosis factor release results in leaky gut:

    Interestingly, anti-tumor necrosis factor (anti-TNF) therapy in the form of remicade (infliximab) and humira (adalimubab) are highly effective in treating Crohn’s disease, rheumatoid arthritis and more recently ulcerative colitis. Unfortunately, such therapy is directed at the already released TNF not the underlying cause or predisposition.

    Probiotics may be protective against leaky gut and bowel inflammation:

    Probiotics are gaining acceptance or interest in the prevention and treatment of both inflammatory bowel diseases (Crohn’s and colitis) as well as irritable bowel syndrome (IBS). They are also being touted to prevent or treat antibiotic associated diarrhea.

    Leaky gut gaining scientific support but bigger picture still being missed:

    Again, however, it appears that there are a lot of researchers and physicians who appear to have some pieces of the bigger puzzle of leaky gut or altered gut permeability as a cause of intestinal diseases and intestinal and extra-intestinal symptoms but few are seeing the bigger picture. Go to to access the Food Doc Blog to explore this bigger picture and the latest research in the context of my experience of a practicing gastroenterologist who is also personally affected by food intolerance. Be sure to subscribe to the blog and e-mail postings to friends and family.


    Gliadin, zonulin and gut permeability: Effects on celiac and non-celiac intestinal mucosa and intestinal cell lines. Drago, S et al. Scand J Gastroenterol. 2006; 41(4): 408-419

    Inflammatory bowel disease: Is it really just another break in the wall? Weber, CR and Turner, JR. Gut 2007; 56(1): 6-8

    Changes in expression and distribution of claudin 2,5, and 8 lead to discontinuous tight junctions and barrier dysfunction in active Crohn’s disease. Zeissig S. et al. Gut 2007; 56(1): 61-72

    The Food Doc, Dr. Scot Lewey, is an expert medical doctor specializing in digestive diseases and food related illness, especially food allergies, celiac disease and colitis. Dr. Lewey's expert reputation as the Food Doc is established by a foundation of formal training in internal medicine, pediatrics, and gastroenterology (diseases of the digestive tract), his personal and family experience with gluten and milk sensitivity, and over two decades as a practicing physician, clinical researcher, author and speaker. Access this expert knowledge online today at

    Article Source:
  12. ruti

    ruti Member

    Thanks so much - I am fighting leaky gut for many years now and I am very frustrated the rgular doctors community doesn't familiar with these terms and ideas and have nothing to offer.
    I am not familiar with some of the ideas you brought here and they are very important to me since I have all these risk factors ( a daughter with celiac - documented leaky gut and lately the lycotistis and bacteria infection in the gut .

    I will learn more what you sent me.
    Thanks Ruti
  13. ruti

    ruti Member

    I read some of the things you showed me for the orthostatic intolerance and they are very helpful, I put up a list of advices for my daughter. I hope it helps.

    THanks Ruti
  14. xchocoholic

    xchocoholic New Member


    Hope this helps you an your daughter. Unfortunately, many in the medical community aren't on board with all of this yet. Based on what I see at the internet, more and more doctors are aware of how gluten in particular affects our bodies. Now they just need to understand leaky gut ...

    I wanted to make sure you are reading Catseye's thread on Dr. Farr. She's got a really good doctor helping her with this ...

    Take care .. Marcia

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