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    Better Education for Celiac and Gluten Sensitive Patients

    Dr. Vikki Petersen D.C, C.C.N

    This article originally appeared in the Autumn 2010 edition of Celiac.com's Journal of Gluten-Sensitivity.

    Celiac.com 12/06/2010 - The hazards to health created by celiac disease and gluten sensitivity are well understood.  From nutritional deficiencies to osteoporosis, from depression to autoimmune disease, and from psoriasis to thyroid disease, there are few areas of the human body that gluten doesn’t touch in a negative way. 

    There is so much emphasis on our inadequate abilities to diagnose gluten intolerance, that when we do finally make the diagnosis I believe we are guilty of another problem—lack of adequate education to those affected patients.
    Just last month a research study was released by the American Journal of Gastroenterology, 2010 Jun; 105(6):1412-20.  The article was entitled “Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet”.  The research team hailed from the Division of Gastroenterology and Hepatology at Mayo Clinic College of Medicine.

    They stated that while a positive clinical response is typically observed in most adults with celiac disease after treatment with a gluten-free diet, the rate of small intestine recovery is less certain.  Their aims were to estimate the rate of intestinal recovery after a gluten free diet in a cohort [a group of people with statistical similarities] of adults with celiac disease, and to assess the clinical implications of persistent intestinal damage after a gluten-free diet. 

    Of 381 adults with biopsy-proven celiac disease, 241 had both a diagnostic and follow-up biopsy.  Among these 241, the confirmed mucosal recovery at 2 years following diagnosis was 34% and at 5 years was 66%.  Most patients (82%) had some positive clinical response to the gluten-free diet, but it did not prove a reliable marker of intestinal recovery. 

     Poor compliance to the gluten-free diet, severe celiac disease as defined by diarrhea and weight loss, and total villous atrophy at diagnosis were strongly associated with persistent intestinal damage. 

    There was a trend toward an association between mucosal recovery and a reduced rate of all-causes of death, adjusted for gender and age. 

    The conclusions were that intestinal recovery was absent in a substantial portion of adults with celiac disease despite treatment with a gluten-free diet, and that there was an association between confirmed intestinal recovery (vs. persistent damage) and reduced mortality independent of age and gender. 
    So what can we learn from this?

    1. Eating gluten-free when you are sensitive will cause you to feel better. 
    2. Going on a gluten-free diet is not enough to ensure that your intestines will heal.
    3. Failing to heal your intestines puts you at increased risk for disease and death.
    4. Successfully healing your intestines reduces your incidence of death from disease.

    While you likely knew the first point, 2, 3, and 4 are perhaps less well known. 

    Where I see that we are failing the gluten intolerant population is in the narrow focus of eliminating gluten as the only needed treatment.  What the above research proves is that, unfortunately, for over 30% of those diagnosed simply eliminating gluten is insufficient to ensure intestinal healing. 

    If patients were educated that healing their intestine would make the difference between contracting disease or not and extending their life expectancy or not, I think they’d be more interested in ensuring that it occurs.

    I am not a researcher but my clinic sees hundreds of patients who align with the results of this study completely.  Patients come to see us who have been told that they shouldn’t consume gluten and for the most part they follow that recommendation.  They know that they feel better when they are gluten-free so that is an impetus to not cheat.  When they do cheat they know that they’ll “pay” for it but they still do so fairly regularly. 

    Why do they cheat?  Because they believe that the diarrhea, headache, bloating, etc is temporary and that when it goes away they are “fine” again.  Their thought process is not unreasonable, it’s just wrong!

    If each patient was educated that cheating created intestinal destruction that in turn put them on a fast track towards disease and early death, I believe that cheating would take on a whole new perspective.

    Patients need this education and they need it often.  Our book “The Gluten Effect” was written with this intention—our patients actually requested it.   They asked for a written reminder of why they should maintain their gluten-free lifestyle.  Later I began taping Youtube videos because other patients preferred a reminder in a video form. 

    I’m trying to say this in a few different ways because it is terribly upsetting to meet patients, as I so often do, who have been diagnosed celiac or gluten sensitive and do not follow their diet solely due to ignorance.

    After almost 25 years of clinical experience I also know that some people “hear what they want to hear” and doctors with the best of intentions cannot get through to everyone.  But I strongly believe that we could be doing a much better job at enlightenment.

    Further, we also need to educate patients about the secondary effects associated with gluten.  When the immune system of the intestine is suppressed, as is the case in the presence of gluten pathology, inhospitable and pathogenic organisms can gain entry into the intestine and remain there.  These organisms may be in the form of bacteria, parasites, amoebas or worms and if they are not identified and eradicated, complete healing of the intestines is all but impossible. 

    The good bacteria that are housed in the gut, known as the microbiome or probiotics, make up much of the intestinal immune system.  In gluten intolerant patients this important population of organisms is often insufficient due to the onslaught from gluten and pathogenic organisms.  If the population of these probiotics is not restored to a healthy, robust balance, any attempt to achieve a healthy intestine will be unsuccessful.

    Lastly, it is an interesting catch-22 that in order to digest our food we need enzymes and enzymes are made from the nutrients we digest.  This circular pattern is dramatically interrupted in the gluten intolerant patient.  Celiacs in particular suffer from very poor absorption.  It shouldn’t then come as a surprise that augmenting with proper enzymes may be critical for “priming the pump” until proper digestion of nutrients is restored.

    Unfortunately I find that few, if any, of these points are made clear to patients who are gluten intolerant.  Most believe they are doing all they need to do simply by maintaining a mostly gluten-free diet.  Nothing could be further from the truth.

    To review we need to do the following:

    • Maintain a “perfect” avoidance  of gluten
    • Test for the presence of pathogenic organisms
    • Test for any imbalance of the probiotic organisms
    • Evaluate the need for enzymes
    • Evaluate for the presence of any other food sensitivities, e.g.  dairy
    • Educate the patient until they have a full understanding of the above
    • Test to ensure that the intestine is healed
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    Guest Richard Woodside

    Posted

    I have had the question for a long time whether or not my intestine had healed because it still bothers me sometimes. I also have a big problem with chronic fatigue, fibromyalgia, osteo- arthritis, insomnia, heart arrhythmia, and of course diabetes. Added to that, I itch terribly all winter long.

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    I think it is unfair to infer that celiacs with ongoing damage purposely ingest gluten. It is impossible in our society to not get unknowingly "glutenized". We have to eat at restaurants once in a while due to travel or work or social life, and restaurant chefs and servers still don't listen to us or fully understand what it means to check ALL ingredients and possibilities of cross-contamination. What we need is to not continually be told by our Dr.s just to follow a gluten free diet, because we do, but outside hidden sources continuously plague us. Our Dr.s need to start telling us what we can do about constant hidden sources attacking us. I have not had a single Dr or specialist tell me what supplements I can take or what I can do when I feel the symptoms again. It is extremely frustrating.

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    Guest Georgia

    Posted

    I have had the question for a long time whether or not my intestine had healed because it still bothers me sometimes. I also have a big problem with chronic fatigue, fibromyalgia, osteo- arthritis, insomnia, heart arrhythmia, and of course diabetes. Added to that, I itch terribly all winter long.

    Richard, you can get help for those other issues by seeing an acupuncturist. Many of these conditions greatly improve through the proper use of herbs and acupuncture. as for the Fibro; Source Naturals has a great multivitamin specifically aimed at ppl with Fibro.

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    Guest Georgia

    Posted

    You make some very important points in your article. I often deal with this kind of ignorance when dealing with patients. Too many people think "oh just a little bit won't hurt". But as for the non-healing small intestines; Chinese herbs are very good at helping to heal the damage. I've also seen success with treating many of the side effects of gluten intolerance/celiac disease. I will admit that not all acupuncturists are cognizant of gluten issues, but the good thing is that it isn't necessary. Acupuncture & herbal medicine are effective for many of these problems. I can provide a list of herbs that contain gluten that you can give your practitioner if needed.

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    Guest Wendy Cohan, RN

    Posted

    This is a great article, and gets at the heart of what my colleague Nadine Grzeskowiak, RN, and I have been trying to do for the past four years - educate patients about gluten intolerance and celiac disease. We do this separately, through Gluten Free Choice Consulting and Gluten Free RN, and together in our new venture geared toward institutional education and transformation, Celiac Nurse Consultants. The problem is getting doctors to refer patients to us, and of course the significant lack of insurance reimbursement for this type of counseling and educational support. Any suggestions would be appreciated.

     

    Wendy Cohan, RN, Portland, Oregon

    Author of "Gluten Free PORTLAND Resource Guide" and "The Better Bladder Book - A Holistic Approach to Healing Interstitial Cystitis & Chronic Pelvic Pain"

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    Guest Ann Trejo

    Posted

    I was just recently diagnosed with celiac disease, and was only told to start a gluten-free diet. No one mentioned anything about probiotics to me. Thank you for this very important information.

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    One of the best I have read. Not wordy, but gives a great deal of information. Makes me wish I lived near this doctor. Glad to see more research is being done. I am gluten sensitive, not intolerant or celiac and so doctors do not usually classify me as I do not test positive on the EGD or blood test, but I do on the food elimination test. Like this article says, I will die early if I do not adhere religiously to a new diet.

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    Guest lifeischange

    Posted

    I agree that there is much more to achieving a healthy gut than just eating gluten free, but I also believe that if the doctors at the Mayo clinic would stop advising patients that they don't need to worry about gluten in skin care products, etc. (I will put a link to a blog post about this on my blog), they may find a much better rate of healing after patients begin a gluten free diet. They say that gluten is not absorbed through the skin and therefore it doesn't matter, but my opinion is that absorption is not the only concern because anything that touches our skin can likely end up being ingested, as we transfer it with our hands to our mouths in regular daily activity.

     

    Like the commenter before me, I also have chronic fatigue and fibromialgia, as well as Adult ADD, and I notice that all of my other symptoms are much worse when I'm accidentally glutened. I've attributed that to malabsorption of supplements and medications because of the gluten damage. I agree with you completely that doing what we need to ensure the healing of the intestine is as important as a gluten free diet, and that they go hand in hand.

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    Guest Catherine

    Posted

    I think getting this message across is vital. It was suggested to me after an unhappy episode involving antibiotics that I might be coeliac. I laughed as I was the last person in my family to ever have digestive complaints, + I was seriously overweight despite a lifetime of dieting, but biopsy revealed that I had serious villious atrophy and my gastroenterologist was quite firm about going gluten-free asap. I did. Nothing changed. I followed up with some further research and took my dietary restrictions much further - and strange things started to happen. A lot of niggling little health problems disappeared. I am still losing unwanted weight. I have energy I didn't realise I was missing, and I feel happier and calmer than I have for years. Oh, and my 12 month follow up gastroscopy showed 'complete healing'. Why wouldn't you do it if you knew what to do?

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    Guest Sarahrosenwebb@gmail.com

    Posted

    Somewhat somber, but very worthwhile reminder, regarding possible secondary complications.

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  • About Me

    Dr. Vikki Petersen, a Chiropractor and Certified Clinical Nutritionist is co-founder and co-director, of the renowned HealthNow Medical Center in Sunnyvale, California. Acclaimed author of a new book, "The Gluten Effect" - celebrated by leading experts as an epic leap forward in gluten sensitivity diagnosis and treatment. Dr. Vikki is acknowledged as a pioneer in advances to identify and treat gluten sensitivity. The HealthNOW Medical Center uses a multi-disciplined approach to addressing complex health problems. It combines the best of internal medicine, clinical nutrition, chiropractic and physical therapy to identify the root cause of a patient's health condition and provide patient-specific wellness solutions. Her Web site is:
    www.healthnowmedical.com

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