Long have I rallied against sentences like these:
If you don’t have Celiac disease – which hardly anybody does – you can eat as much gluten as you want!
Gluten is a toxic molecule unfit for human consumption in any circumstance!
Statements such as these – in addition to being blanket statements that reveal laziness of thought and delivery – are simply factually incorrect.
One, Celiac disease is NOT the only way to have a sensitivity to gluten. Non-Celiac gluten intolerance (NCGS) is an established phenomenon.
Two, both Celiac and NCGS present themselves in a myriad of ways in the body, not just confined to the gastrointestinal system.
Three, there is more than one way to have a gluten sensitivity. Sensitivity can come from antibody production, the formation of immune complexes, destruction of tissue, histamine intolerance, as a result of something awry in the gut like dysbiosis or increased permeability or a variety of other reasons, manifesting in a plethora of symptoms you are likely well acquainted with. My six month, self-paced Gluten Free Lifestyle v2 Program will walk you through sorting out all of these steps!
There is a huge push-back against the concept that people can be sensitive to gluten and not have Celiac disease. Those that if you told them you were sensitive to gluten, they would tell you that you were being swept up in a fad. They think there is some overt ploy by the makers of gluten free foods to harness the brains of all into a gluten-free conspiracy.
A major reason, in my opinion, of why NCGS is so slow to get traction in the mainstream despite having proof of existence by the main stream (the Journal of Gastroenterology actually coined the term non-Celiac gluten sensitivity) has to do with testing.
Accurate, reliable testing methods for NCGS remain elusive.
And, interestingly, testing methods for Celiac disease are largely incomplete and unreliable.
Hence the name of this blog. There are many ways to be sensitive to gluten.
This is because there are 24 sub-fractions of gluten that can create a number of immune responses (IgG production, immune complex formation, cytokine/inflammatory compounds release, etc).
So, if we only take 1-3 sub-fractions and test them in only one way, you can see that the picture remains very incomplete.
To test for Celiac disease, most docs will check anti-tTg antibodies (they will only check ONE type, when there are about 6!), anti-endomysial antibodies, EGA, deamidated gluten and alpha gliadin antibodies. Then, if these are positive, a biopsy is done, looking for damage to the villi of the small intestine. Testing for Celiac leaves out a wide variety of gluten sub-fractions, and it is estimated that for every case of Celiac that is diagnosed, 6 are missed.
Testing for NCGS is even hairier, because there is not a gold standard laboratory evaluation for such. Some practitioners will test gliadin IgG, which is woefully inadequate and leaves enormous gaps in the full array of compounds that the body can be reacting to. Others are more comprehensive in their approach, using a lab like Cyrex Array 3, which looks at all of those subfractions, but it is unclear if those results are fully reliable or reproducible or sensitive.
It could be that your body is reacting to gluten because of something going on within the digestive or immune system.
You could be reacting to gluten because you are not producing enough digestive fire to break it down. Unbroken molecules are more stimulating to the immune system and more highly fermentable, invoking symptoms.
You could be reacting to gluten because your microbiome is imbalanced and thus the bacteria and microorganisms present either lack the equipment to help facilitate gluten’s breakdown or they preferentially over consume it. This is why folks who have dysbiosis, SIBO, IBS (all types) tend to do better on a low gluten diet. Gluten often comes with high-FODMAP foods, which are troublesome for the gut flora.
You could be reacting to gluten because the lining of your GI tract is irritated, inflamed, or overly permeable.
You could be reacting to gluten because you have an autoimmune disease.
So, it is complicated. It can be subtle. NCGS can be primary or secondary, due to some other reason in the system. NCGS can last a lifetime, a few years, a few months or just a few weeks, all depending on the context and circumstances of YOU!
Prevalence of NCGS is also super hard to quantify, with ranges from respected sources saying anywhere approximating Celiac disease (one in a hundred to one in a hundred and forty) to a whopping one-in-ten people. It’s because of this heavily mixed, non-uniform presentation that makes it so tricky!
This is why I am a firm advocate for elimination-challenge dietswhen it comes to uncovering NCGS. There is no lab out there that can substitute your own first-hand experience. Not to mention that there is no lab out there that will reliably diagnose NCGS.
<In addition to an elimination challenge diet, I recommend folks also utilize gut restoration in conjunction with it. This helps cover all bases and shore up the aspects of digestive health that actually could be contributing to sensitivity! The Gluten Free Lifestyle v2 Program takes you through this entire process, with a great education, tools, tricks, resources, cooking demos, workouts and more to boot! Enrollment for this six month, self paced program ends this Saturday, December 10th, so be sure to check it out!>
Our society worships labs. Most physicians would rather look at a sheet of paper to tell you what is wrong or not about you rather than look at you, hear your story and symptoms and timeline and do a physical exam. The emphasis on diagnosis is skewed asymmetrically towards laboratory analysis, which leaves much on the table.
This is where, for those with some pluck who are looking for answers, an elimination-challenge diet can provide.