I am writing this article in the hopes of helping those who have been diagnosed with gluten intolerance but
To clarify definitions, I use ‘gluten intolerance’ as an umbrella term to encompass both celiac disease and gluten sensitivity. So keep that in mind as you read this.
I have the privilege to speak to many individuals on a weekly basis who not only live locally to my clinic but also from across the United States and internationally. Just a few days ago I had phone consultations with individuals living in Shanghai, Philadelphia and Los Angeles respectively. My clinic, HealthNOW Medical Center, is a destination clinic and we treat individuals who live at a distance as well as though who live locally, hence these particular calls. As a result of doing such consultations as well as receiving responses to my lectures, books, blogs and videos, I have an opportunity to speak to many people and hear their stories.
I often wish I had the ability to ‘beam them up’ utilizing the fictional technology from Star Trek – it would make travel logistics a piece of cake and I’d be able to help more people faster. But, getting back to reality, I want to review with you the most common mistakes and misconceptions that I run into with those who are gluten intolerant. These issues are resulting in ill health both currently as well as in the individual’s future.
Here’s the List of 10 Common Mistakes
Discussion: Firstly it must be known that celiac testing is not highly sensitive. If it were we would be diagnosing more than 5% of the celiacs in our country.
Secondly, a negative celiac test is not only NOT an absolute that one doesn’t have the disease, but it in no way tests for gluten sensitivity, a serious condition affecting likely 20 to 30 times the number of people who have celiac disease.
Finally, one of the tests that we utilize here at the clinic and one that has been established by other researchers to be quite reliable, is the exact test that the person is now ignoring the results of. Namely, eliminate gluten for 30 days from your diet and see how you feel. A noticeable improvement in symptoms is a valid test.
Too often I speak to people who are quite seriously ill who have ignored, sometimes for years, something they knew to be the truth simply because an insensitive lab test didn’t corroborate their gluten intolerance.
Don’t ignore the knowledge you possess about your body. If you need a lab test to corroborate it and you are already gluten-free, there’s always genetic testing for both celiac disease and gluten sensitivity. Entero Labs has a nice test for both.
Such doctors insist that their patients reintroduce gluten into their diet for a minimum of 6 weeks and then schedule an intestinal endoscopy and biopsy.
Discussion: It was once thought that a biopsy was the ‘gold standard’ for celiac diagnosis, it is a tool of diagnosis, but in no way the 'gold' nor ultimate test. We now know that to be untrue. When I say ‘we’ I am referring to those in the field who research or who stay on the cutting edge of research. Unfortunately there are many doctors who are not in this category and their lack of current knowledge puts their patients at great risk.
I cannot tell you how many times I have spoken to individuals who have reintroduced gluten into their diet, despite their knowledge of how sick it would make them, only to, get extremely ill, sometimes for months. Worse still, some patients initiated an autoimmune disease due to the reintroduction that we couldn’t completely reverse.
I call reintroducing gluten ‘Russian roulette’, perhaps you can now appreciate why.
One should NEVER EVER reintroduce gluten once they know they are sensitive to it, regardless of any test result. There is no test that is ‘worth’ risking your health over, especially not for a biopsy that is very poor at identifying the presence of non-classical celiac disease and gluten sensitivity.
That brings up some new terminology:
Classic celiac disease describes the disease as it was originally discovered, to be primarily digestive in nature and associated with destruction of the lining of the small intestine. We now know, through research, that classical celiac is in the minority of most celiac cases. Once again this data is not well known in the medical community, explaining why we miss 95% of those who suffer from the disease.
Gluten sensitivity is an intolerance to gluten that is not associated with the destruction of the lining of the small intestine but it creates inflammation to the immune system and creates many of the same diseases and symptoms associated with celiac disease. Conservative estimates of gluten sensitivity put its incidence at 20% of the population, making it much more prevalent than celiac disease. An intestinal biopsy would never be positive in an individual with gluten sensitivity.
Discussion: Unfortunately, whether you have celiac disease or gluten sensitivity, gluten consumption must be of a zero tolerance policy. I like to tell patients that consuming gluten is a qualitative factor not a quantitative one. In other words, ANY gluten is problematic.
It does make intuitive sense that more of something is bound to create greater harm than less, but with gluten intolerance that doesn’t happen to be the case. It doesn’t require much gluten to begin the cascade of inflammation that can in turn create one of the over 300 diseases and conditions associated with it.
Discussion: This scenario can result in many different repercussions. An individual can highly suspect gluten intolerance based on observing their body’s reactions to it, but due to having no classic digestive symptoms their doctor refuses to test them and, worse yet, talks them out of the idea that gluten could possibly be a problem!
This one frustrates me because the person knows, without question, that gluten is the culprit but they allow a clinician who is operating from a dated knowledge base to refute it, and as a result they damage their health even further.
I truly cannot tell you how often I hear such stories. And these individuals feel completely adrift and helpless because they literally don’t know where to turn for help. I’m glad when they find our clinic and we can validate what they know to be true and really get down to work to improve their health.
Discussion: This is a tough one because it is human nature to avoid things that make us feel bad but it’s more difficult if there are no obvious effects.
Someone who has been diagnosed as gluten intolerant IS having a reaction to gluten and it is shortening their lifespan and moving them closer to disease, each and every time they cheat.
In the past here at HealthNOW we have used laboratory testing to ‘show’ patients that their immune system was registering their cheating and thereby hopefully convince them that damage is being created.
Fortunately a fairly new lab test by Cyrex Labs will go a step further. This test will reveal if an autoimmune disease is being created as a result of consuming gluten and what part of the body is being targeted.
We can’t ‘feel’ diseases in the making, so this test will be a wonderful asset to educating patients about what they may be causing for themselves as a result of their lax diet.
Discussion: This really is a point of poor education on the part of the doctor, their patient or both. We put in a lot of time with our patients to ensure that they understand that a reaction to gluten can occur within hours or up to 8 or more days of ingesting it. We do our very best to ensure that patients understand that a headache or rash (as an example) that appears four days after a gluten ‘cheat’ is a reaction to that dietary indiscretion.
Not only that, but we strive to ensure they understand that the damage goes way beyond the symptom that they feel. It goes deeper, to the degree that they are likely creating a degenerative or autoimmune disease by their lax diet.
Discussion: The above may strike you as a little unbelievable, I only wish it was. I don’t know if certain clinicians just don’t feel comfortable asking their patients to follow a diet that perhaps they themselves wouldn’t want to follow or what exactly the issue is. But the above scenario has come up often.
To add insult to injury the disease process that the doctor has decided to focus on rather than the celiac disease is often a disease CAUSED by gluten!
I remember distinctly a young adult woman who was told by her endocrinologist that they were going to focus on her diabetes rather than her celiac disease because it would be ‘too much’ to address both. There is strong research evidence for the correlation between celiac disease and diabetes, not to mention the fact that untreated celiac disease is known to increase the risk of death from all causes.
Discussion: You might think that I’m only talking about children here but I’m not. As a matter a fact I often find my younger patients to be quite disciplined. Adults, however, do at times suffer from ‘not wanting to be different’ or ‘not wanting to be rude’ and they solve their dilemma by cheating.
My advice here is to explain to the person urging you to cheat that gluten is like rat poison to you. This works well for those people who say, “Come on, a little won’t kill you…”. Ask the person how they would feel if you offered them ‘just a little’ rat poison. Would they take it? After all, it’s just a little.
You get my point. I’ve been doing this for over 20 years and patients report that this example does seem to communicate well to others. Feel free to utilize whatever talking points work best for you, but PLEASE, don’t let peer pressure damage your good health.
Discussion: There’s a saying that goes, “What you don’t know can’t hurt you.” Unfortunately that’s not true for gluten intolerance. Deciding not to get tested doesn’t diminish or slow down gluten’s degenerative effects.
Gluten isn’t something you can hide from. If gluten intolerance or autoimmune diseases are a part of your family tree I would highly suggest that you get tested for both celiac disease and gluten sensitivity and if negative, confirm the accuracy or inaccuracy of that test result with a 30 day gluten elimination diet.
It is that important that you know for sure to give yourself the opportunity of not following in the genetic predisposition that is present in your family tree.
Discussion: This may be the last point on our list but it certainly is not the least important. In fact, when I’m talking to individuals who know they have celiac disease or gluten sensitivity, this is one of the most common complaints that I hear.
Unfortunately the medical profession’s sole treatment strategy for celiac disease is gluten avoidance, period. I wish that was enough, but it isn’t in the vast majority of people.
Why? The secondary effects created by a gluten intolerance simply do not remedy themselves when gluten is removed from the diet. Gluten has a devastating effect on the body’s immune system and in order to normalize that immune system there are several factors that must be addressed, the most common of which follow:
a. The presence of pathogenic (disease-causing) organisms. These can be bacteria, parasites, amoeba, etc but they must be discovered and treated in order to remove excess stress from the immune system and to allow vital healing of the small intestine.
b. An imbalance of the good bacteria or probiotic population in the small intestine. These probiotics (or microbiome) account for the strength of the immune system and supporting their restoration to a healthy, robust level is critical for the immune system as well as the prevention of disease.
c. Cross-reactive foods can be part of the patient’s diet and these foods can mimic the effects of gluten thereby preventing healing and causing gluten-related symptoms despite a gluten-free diet. These foods are often temporary irritants while the body is healing but we have found some patients who require permanent elimination of some of these foods.
d. Hormonal imbalance created by the stress on the body that gluten creates is something that must be normalized through natural means in order to regain mental balance, increased energy levels and normalized weight, just to name a few.
e. Toxic elements including heavy metals and poor detoxification abilities of the body are also a potential hurdle that needs to be addressed when restoring health to someone who is gluten intolerant.
f. Enzyme and vitamin deficiencies should be evaluated and treated as they are discovered.
Basically, the stress on the body that gluten has created must be diagnosed and handled in order for the individual to regain their optimal health. Addressing these secondary effects is not complicated. It takes the knowledge of what they are, how to correctly test for them and how to effectively treat them, but this is not difficult. However, the lack of a widespread awareness of these factors results in many individuals continuing to suffer despite maintaining their gluten-free lifestyle.This just isn’t fair and it’s something I am passionate about remedying.