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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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    It's amazing what happens when you don't know until you get older and suffer from something else. I was diagnosed with epilepsy when I was 32 and went three years with no control of seizures, even after brain surgery (although it was quite a bit easier on my head and body). Then someone on one of the epilepsy forums suggested looking into gluten sensitivity due to part of my epileptic diagnosis (hypocampal sclerosis). Upon study of this, I found that it described my situation to a "T" and my primary doctor agreed. Since being gluten free, I have more control over my seizure activity (pretty much gone with gluten my free diet). If I eat gluten, I know that I will be having a seizure pretty soon and maybe multiple.

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    Guest Terry Jaynes

    Posted

    Loving this site and reading all of the other comments. The absolute worst for me at restaurants is PASTA! Can anyone relate? I might as well put a gun to my head... the pain is terrible. Avoid it like the plague! I'm currently reading "Belly Wheat" and decided it is the gluten that is giving me so many physical probs... this is what led me to Google celiac disease and your site. As an RN I see so many disease processes that mimic one another. I'm convinced that many could be reduced if not cured by avoiding gluten.

    Thank you so much for your site and the incredible info.

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    Guest Terry Jaynes

    Posted

    Would you eat poison served up at a restaurant? Plan ahead, take your celiac seriously. Eat whole foods in restaurants, steak, chicken, baked potatoes, sweet potatoes, unseasoned, buttered vegetables, etc. I find I have many choices. I even ask that they put on new gloves to avoid cross contamination. Many restaurants offer gluten free menus, Johnny Corrino's, Jason's Deli just to name two.

    Thank you Katie for your suggestions. I was unaware that these restaurants offers such cuisine!

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    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.

    I have recently been diagnosed with celiac disease and my wife has had it for 5 years now. What are the Chinese herbs that are helpful in repairing the cilia?

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    Guest sharon@mac.com

    Posted

    Thank you Katie for your suggestions. I was unaware that these restaurants offers such cuisine!

    I still have not been diagnosed by a mainstream doctor, however I have had the blood work done (on my own time and money) and have come up gluten intolerant. My mainstream doctor still does not believe it (thinking it's time to get a new one) but we have an understanding. Thus the reason I went to the medical facility I mentioned below.

     

    I do not believe that the author meant to suggest that ALL celiacs ingest gluten on purpose. However, I have met some of the people they are describing. "I'll just eat a bagel today," they say, "and it will be okay later." "I don't do it often," they say, "so it's okay." It's because these people have not been correctly educated on what their disease really is and what it can do to them in the future. Most just assume, again like she said, it just makes me feel bad for a while and do not understand they can get cancer, arthritis, fibro, osteoporosis, etc. from continuing to ingest gluten. I was lucky to go to a Medical facility that is strictly gluten-free and educates you on what can truly happen when you still ingest gluten, that a gluten-free diet can relieve or cure most illnesses. They teach you how to care for your immune system, give you recipes, massages, spa treatments, teach you meditation and most of all to relax. Without all their education, I would not understand! It was money well spent!

     

    BJ's also offers gluten-free pizzas and some other menu items.

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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.

    Do not forget to check your lotions, hair products, body washes, soaps, makeup, lip sticks, mascara, eye liners, medicines, pharmaceutical drugs, supplements, drinks, nail polish etc - they too can contain gluten - and the list goes on!!!!

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    Thank you for this info. Newly gluten free with dairy and egg allergies, also can't eat meat due to stomach pain. This reinforces with me to not only follow the gluten free diet but also remain, dairy, egg and meat free to not only be without digestive pain, etc., but also to aid healing of the intestine.

    I believe that grain fed beef, chicken and pork are the reason it is so hard for us to digest meat. When I eat beef that was fed a grass diet, I do not have the same problem. Just a thought!

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    Guest Rhonda Boyle

    Posted

    Wow! Thanks to all previous comments. I learn so much here, every time I read your articles. I am just starting my own blog about my gluten intolerant journey. I will definitely send readers to this web site who want answers. If it wasn't for my clean eating and food allergy savvy chiropractor, I would still be sick. It seems like doctors only want to treat symptoms instead of investigating causes of health issues. Again, thank you for all you do in educating "The Intolerant".

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    Thank You all for taking your time to help others. This is a great site!

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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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