This article originally appeared in the Autumn 2010 edition of Celiac.com's Journal of Gluten-Sensitivity.
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?
- Eating gluten-free when you are sensitive will cause you to feel better.
- Going on a gluten-free diet is not enough to ensure that your intestines will heal.
- Failing to heal your intestines puts you at increased risk for disease and death.
- 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