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Better Education for Celiac and Gluten Sensitive Patients

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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29 Responses:

 
Richard Woodside
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said this on
10 Dec 2010 9:09:31 AM PST
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.

 
Georgia
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said this on
13 Dec 2010 7:30:12 PM PST
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.

 
Deanna
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said this on
13 Dec 2010 7:46:45 AM PST
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.

 
shugal
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said this on
21 Feb 2011 9:14:18 PM PST
I agree...I am 100% gluten free in my home and read every label at the grocery store...but even I get "glutienized" as you put it..without my knowledge! It's impossible to stay restaurant free! I too get very angry when within 10-20 minutes of ingesting something with gluten at a rest. where I ASKED and was told NO, I get extremely ill!! I don't ever ever ever take gluten into my body on purpose!! I can't take how ill it makes me...I mean even the tiniest amount makes me so ill. So yes it's unfair to infer we 'don't' follow gluten free..I do! yet I still get sick...because of hidden gluten! It is very very frustrating!

 
Katie
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said this on
03 Aug 2011 10:12:50 PM PST
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.

 
Terry Jaynes
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said this on
20 Sep 2012 4:59:11 PM PST
Thank you Katie for your suggestions. I was unaware that these restaurants offers such cuisine!

 
sharon@mac.com
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said this on
27 Jan 2013 1:45:01 PM PST
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.

 
Georgia
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said this on
13 Dec 2010 7:39:08 PM PST
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/CD. 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.

 
Mark
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said this on
10 Dec 2012 9:25:39 AM PST
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?

 
Wendy Cohan, RN
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said this on
13 Dec 2010 11:10:09 PM PST
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"

 
Ann Trejo
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said this on
13 Dec 2010 11:48:01 PM PST
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.

 
Diana
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said this on
14 Dec 2010 7:43:32 AM PST
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.

 
Sharon
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said this on
27 Jan 2013 1:49:03 PM PST
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!!!!

 
lifeischange
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said this on
14 Dec 2010 9:05:07 AM PST
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.

 
Catherine
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said this on
14 Dec 2010 12:18:23 PM PST
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 gf 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?

 
Sarahrosenwebb@gmail.com
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said this on
14 Dec 2010 1:51:24 PM PST
Somewhat somber, but very worthwhile reminder, regarding possible secondary complications.

 
Margaret
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said this on
14 Dec 2010 3:59:18 PM PST
I suspect allergies are keeping me from healing 100%.
And then manufacturers are allowed to have a low percent of gluten in "certified gluten-free" foods.
Back to plain, home cooked, everything; even crackers!

 
M oRTH
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said this on
18 Dec 2010 1:29:25 AM PST
Good article. Will research more info on healing the small intestine.

 
Susan
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said this on
15 Jan 2011 9:02:42 AM PST
My doctor has recommended hyperberic chamber treatments to help repair my mucus lining. It also helps with related "brain fog". I feel dealing with the psychological issues is just as difficult as the physical ones. Social isolation is a problem because the world seems to revolve around food and socialization. I have an intolerance to gluten, soy and eggs. This makes it virtually impossible to eat away from home. The related comments when I attend events and don't eat along with observations about my thinness are hard to deal with.

 
Susan
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said this on
08 Mar 2011 3:20:39 PM PST
Susan, I get just the opposite,"If you're Celiac why aren't you thin?" Another thing I've learned out in public eating; put a few things on your plate, no one pays attention after that to who eats what. I am trying to take conversations about 'health' off the menu!

 
Carin
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said this on
18 Feb 2011 5:21:50 AM PST
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.

 
Sharon
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said this on
27 Jan 2013 1:53:12 PM PST
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!

 
maryabbey
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said this on
28 May 2011 1:30:14 PM PST
very informative

 
Katie
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said this on
03 Aug 2011 10:17:10 PM PST
The article was great, my comments were in reference to another person's comment, about eating at restaurants.

 
Angela
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said this on
21 Aug 2011 2:01:11 PM PST
Thank You; recently my husband and I went both gluten and caesin free. I have battled from birth with a mutated blood clotting factor, I clot at an accelerated rate. with this is numerous secondary problems. The worst is digestion and iron deficient. I have never been told by doctors about gluten sensitivity or celiac disease, only told if i have problems digesting then reduce it in my diet. My husband's Mothers' side of family is almost entirely gone including her recent passing - all from cancer. Since we have eliminated Gluten and casein we have felt much better. Immediately my throwing-up in my sleep has stopped and my husbands chronic heart burn is reduced to rare occasions. We have both gradually at healthy rates, lost weight. Best of all we are enjoying the foods we eat now.

 
Ray
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said this on
01 Nov 2011 4:04:15 PM PST
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.

 
Terry Jaynes
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said this on
20 Sep 2012 4:50:38 PM PST
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.

 
Rhonda Boyle
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said this on
16 Jul 2013 12:02:20 PM PST
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".

 
Julie

said this on
29 Jan 2014 10:31:04 AM PST
Thank You all for taking your time to help others. This is a great site!




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