I came across an article I would like to share with all of you. It pertains to gluten intolerance, and how it can be worse than celiac disease.
The full article can be viewed here.
The author, Kriss Kresser, writes that gluten intolerance is an overlooked diagnosis, and that all of the gluten shaming that is going on right now is detrimental to treatment. He states:
#1: Celiac disease is far easier to diagnose than NCGS
According to some estimates, for every diagnosed case of celiac disease (CD), there are 6.4 undiagnosed cases that remain undiagnosed—the majority of which are atypical or “silent” forms with no damage to the gut. (1) This silent form of CD is far from harmless; it is associated with a nearly fourfold increase in the risk of death. (2)
I believe that patients with NCGS are even more likely than patients with CD to go undiagnosed. Most gastroenterologists today know how to screen for celiac disease. They will typically test for antibodies to antibodies to alpha gliadin, transglutaminase-2, deamidated gliadin, and endomysium, and if positive do a biopsy to determine if tissue damage is present.
However, we now know that people can (and do) react to several other components of wheat above and beyond alpha gliadin, the component that is implicated in CD. These include other epitopes of gliadin (beta, gamma, omega), glutenin, wheat germ agglutinin (WGA), gluteomorphin, and deamidated gliadin. What’s more, people can react to other types of tissue transglutaminase, including type 3—primarily found in the skin—and type 6—primarily found in the brain. (3, 4, 5, 6, 7, 8)
As you can see, this patient did not react to the typical proteins that suggest celiac disease, but they did react to other proteins. This patient will be told that they do not have celiac, and can go ahead and keep eating gluten.
This makes me wonder about my own test for celiac many years ago-I am sure now that if I had been tested for other gluten proteins that I would have tested positive for gluten intolerance, which would have saved me years of suffering.
2: Current cultural attitudes toward NCGS mean more people will remain undiagnosed
There has been a big backlash in both the mainstream media and on social media channels against the idea of gluten intolerance. Despite overwhelming evidence to the contrary, uninformed journalists and armchair Facebook scientists continue to argue that NCGS is some kind of widespread collective delusion—simply a figment of the imagination of anyone who claims to experience it. And for reasons that I do not fully understand, they do so with an almost religious fervor.
The “gluten intolerance haters” seemed to emerge in force after a paper published by Gibson et al. in 2013 made the rounds in the media. This study found that a group of patients with irritable bowel syndrome (IBS) were not sensitive to gluten, but instead were reacting to a group of poorly absorbed carbohydrates called FODMAPs. (16) Aside from the fact that this study did not in any way disprove the existence of NCGS, from a practical perspective the study findings would not have changed the behavior of most people with IBS who identified as being gluten intolerant, since wheat and many other gluten-containing grains are FODMAPs and should thus be avoided by these patients.
More importantly, however, in the last two years since the Gibson paper new studies have been published that directly contradict Gibson’s findings and strongly suggest that patients with IBS do, in fact, react adversely to gluten—and not just FODMAPs.
FODMAPS may play a role, but wheat, barley and rye are listed as FODMAPS. I have written about this before-you may react to some or all of the foods on the list. But avoiding FODMAPS is not a total answer here.
3. Many doctors and patients aren’t serious enough about NCGS treatment
This last point is a natural consequence of the first two. If detecting NCGS in conventional medical settings is unlikely, and there is a strong cultural backlash against it, where does that leave the millions of people that are likely suffering from NCGS without even knowing it?
Even if they do suspect that they are gluten intolerant, they might be dissuaded from pursuing a strict gluten-free diet by their friends, social media contacts, or even their doctor, all of whom are likely uninformed on this subject and do not understand the deficiencies in conventional testing or the complexity of the topic.
Based on the research I’ve reviewed in this article, and several others I linked to here, we should be more aggressive—not less—in diagnosing and treating gluten intolerance.
Finally, it’s worth pointing out that many people that are intolerant of gluten are also intolerant of other food proteins found in foods like dairy, eggs, and unfortunately, coffee. Studies have shown that about 50 percent of patients with CD show intolerance to casein, a protein in milk. (20)
This intolerance to dairy, eggs and coffee are quite common with a gluten intolerance. I can’t tolerate coffee, or milk. But it’s not the casein that I can’t tolerate, it’s the whey protein.
Everyone is different, and will react differently to food intolerances. But we have to stop the gluten shaming of those without a so-called “legitimate” disease. There are many, like myself, who are undiagnosed and wonder why they are sick all of the time. If the medical establishment, and so-called “experts” don’t stop guilting people into eating bread, and celebrities don’t stop touting gluten free diets, many will go on suffering.
The only way to know for sure if you are gluten intolerant is to do an elimination diet. If your symptoms disappear, you most likely cannot eat gluten. Elimination means elimination, not “I’ll just eat pasta, not bread” Wrong…..you must eliminate all gluten.
If you need assistance in doing an elimination diet, there are websites that can help you. A good nutritionist is worth her weight in gold. I can also assist you. Please contact me if you need guidance. I am here to help.