Why People Believe that Non-Celiac Gluten Sensitivity Does Not Exist [It is NOT All In Your Head!]


Girl Opening a Book and Light is Coming Out
Despite the scientific evidence, people still do not
believe that non-celiac gluten-sensitivity is real

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The number one search result in Google News this morning for the term “gluten” was another article bashing non-celiac gluten sensitivity for not being a thing.

This time, it was the Science Alert folks.

They didn't catch me with their click-bait title or the spoiler alert that promised to provide the latest news on the gluten-free diet craze because that spoiler said that gluten sensitivity was probably not real.

Old news.

What caught my attention, however, was that before even getting into the meat of the article, the introduction answered its own questions:


“The answer is simply no.”

This idea, that gluten sensitivity isn't real was stated as a fact. It sat right above an advertisement.

I couldn't help but wonder how many readers actually scrolled past that advertisement to get to the article. Probably, not many.

Pinterest Image: Small Child and Kitten

Why Journalists Use the Pyramid Form of Writing


I understand why journalists use a pyramid form of writing. Readers pressed for time will skim instead of read.

They come to your site to get the scoop on the meaty stuff, so journalists put the facts at the top of the article, and then go into more detail later on, for those who actually care.

At one time, you could actually trust this style of writing, but today, I saw for myself that trust is no longer the case.

If you don't scroll past the advertisement to read the article and follow the links it provides to its sources, you are probably going to walk away with the idea that you don't have to believe in non-celiac gluten sensitivity.


What's the Difference Between Celiac Disease and Non-Celiac Gluten Sensitivity?


Most journalists will admit that celiac disease is real. What they struggle with is accepting non-celiac gluten sensitivity.

To be diagnosed with celiac disease:

You have to have some degree of villi and crypt damage in the upper section of your small intestine, verifiable by biopsy.

Some doctors will diagnose you by using a celiac-specific blood test alone, and some doctors will diagnose you if the biopsy report found a massive amount of inflammation in your crypts, yet no villi damage, but these doctors are extremely rare.

The only exception to the villi-damage criteria is dermatitis herpetiformis (DH).

DH occurs when gluten fragments find their way to the skin, and the immune system mistakes them for a virus or bacteria. If you have DH, verified by a skin biopsy, you may or may not have villi damage.

But you are still classified as having celiac disease.

If you don't have villi damage or DH, but still react to gluten with celiac-like symptoms, you are labeled as non-celiac gluten sensitivity.

Is Non-Celiac Gluten Sensitivity All in Your Head?


There has been a very strong push from the media over the past few years to get people to believe that gluten sensitivity does not exist.

Of those who do believe in its existence, non-celiac gluten sensitivity is often reported to be not as big of a deal as celiac is, especially when it comes to cross contamination.

But this is not correct.

All gluten intolerance is very serious, as gluten can affect any and every cell in your body.


Many of us were raised to see the media as authoritative, so few people question what they say. They just automatically believe that every news story is true.

Originally, a lot of reporters didn't accept celiac disease as real.

But over the past couple of years, they have started to give a token nod in our direction.

While that's an appreciated gesture, shunning those who have other gluten issues outside of the villi damage criteria is not appropriate journalism.

Journalism was established to be objective in nature, unless the piece was clearly marked opinion, but you hardly see objective reporting anymore. This seems to reflect the way society itself is growing less objective and more controlling.

My youngest son was diagnosed with lymphocytic colitis a couple of years ago, which was found during a colonoscopy.

This type of colitis is a subgroup of microscopic colitis. Miscroscopic colitis is very common in those with celiac disease. However, in my son's case, testing for celiac was negative.

Lymphocytic colitis is an autoimmune condition that tends to show up in older folks, but I've been hearing about more and more young people being diagnosed with it lately.

Lymphocytic colitis doesn't affect the way you absorb nutrients from your food like celiac does. Instead, the immune system attacks gluten further down the intestinal tract.

Even though you don't have celiac disease, you still experience a lot of intestinal inflammation, diarrhea, and pain whenever you eat gluten.

Lymphocytic colitis is a gluten issue, the gastroenterologist said.

There's no doubt about that.

But to date, it is classified as a different condition than celiac disease, so it falls into the non-celiac gluten sensitivity category.

This is where a lot of the confusion about gluten comes in.

Many people with non-celiac gluten sensitivity have health conditions and physical problems that are a direct result of gluten ingestion, but the collateral damage is different than for celiac disease.


Instead of the real problem, these people are often diagnosed with some of the following conditions that are listed in the book, Healthier Without Wheat:
  • thyroid disease
  • anemia
  • anxiety disorders
  • asthma
  • canker sores
  • chronic fatigue
  • depression
  • eczema
  • fibromyalgia
  • indigestion
  • migraine headaches
  • infertility
  • idiopathic neuropathy
  • psoriasis welts
  • chronic sinus infections
  • spontaneous miscarriages
  • vitamin deficiencies
This overlapping and potential for gluten to be responsible for a host of other diseases and conditions makes non-celiac gluten sensitivity of vital importance.

Yet, the media, and even the medical community itself, are fighting against accepting gluten sensitivity as real.

Part of the problem is our tendency to look up to those we consider authoritative as being more knowledgeable, trustworthy, and reliable than ourselves. Without investigating what is said, we just automatically believe it's true.

When it comes to super sensitivity, that can keep you sick for a very long time because the general consensus of the gluten-free community is that if you're eating a gluten-free diet, but you're still sick, there must be something wrong with you other than gluten.

Latest Advice for Super Sensitive Celiacs


In the article I read this morning, the author tried to use a 2013 Australian study to justify why feeling better on a gluten-free diet is not about the gluten. This study is often thrown at super sensitives, as an explanation for their violent reactions to gluten, as well.

The idea that what this study found applies to all people with gluten sensitivity is ludicrous, but that's what some people continue to believe.


I didn't have to go further than the abstract to see the flaws in that line of thought.

While it could be argued that the study group was too small to be significant across the expanse of gluten intolerance, or even super sensitivity, all 37 of the men who participated in this study had Irritable Bowel Syndrome (IBS).

That fact is often left out of any discussion of this study.

These men were not just a group of men who thought they were gluten intolerant. They were having real gastrointestinal problems every time they consumed gluten.

The study conclusion was that these particular 37 men were actually having difficulty digesting complex carbohydrates, often referred to as FODMAPs.

The study abstract was super confusing to read, but essentially, 37 men were given a reduced FODMAP diet for two weeks, and as a result, their symptoms improved.

For one week, they were then given:
  1. A super high amount of gluten (16 grams a day)
  2. A low amount of gluten (2 grams a day) plus 14 grams of whey protein
  3. Or 16 grams of whey protein with no gluten
The men got worse on all three diets, including the gluten-free whey-protein control diet.

A few of the men, about 8%, had gluten-specific reactions, but while they were on the FODMAP diet, those reactions were apparently not gastrointestinal.

The researchers gave the men two weeks off, and then retested them on the various diets a second time for three days. They all got worse again.

This is basically how a food elimination diet works.

You remove all of the foods you think you might be reacting to for a couple of weeks, and then reintroduce those foods, one at a time, to see if it triggers a reaction.

For food sensitivities, the reaction can be quite violent once all of the allergens are out of your system.

The researchers concluded that there was no evidence for non-celiac gluten sensitivity based on the observance that the control group (fed whey protein, which is a dairy product) also got worse.

“In a placebo-controlled, cross-over rechallenge study, we found no evidence of specific or dose-dependent effects of gluten in patients with NCGS placed diets low in FODMAPs.”

This study was pretty big news when it was first published because it appeared to support what the media wanted the public to believe.

However, it totally ignored the fact that many people who are intolerant of gluten are also intolerant of dairy products.

Plus, not all dairy products are gluten free, and that includes whey protein.

Why Do People Recommend the FOODMAP Diet?


The FOODMAP diet was specifically designed for those with IBS, and that's all this study shows.

Men with IBS felt better on a low-carb, dairy-free diet that eliminated additional hard-to-digest foods.

Many celiacs, when first diagnosed, have problems with digestion, and stick with easy-to-digest foods, but that doesn't mean their main problem isn't gluten.

For many of us super-sensitives, a reaction to dairy is the first sign that gluten has crept into our diet or environment somewhere.

Overall, the study did not prove that non-celiac gluten sensitivity does not exist.

Man with large body and little tiny head
Media is always trying to prove that
non-celiac gluten sensitivity does not exist;
so people just believe that's true

However, the media went wild, proclaiming that it did, so many misinformed bloggers and people in the medical field picked up on the false interpretation of the study and began spreading the word that gluten sensitivity was not a thing.

People hearing the news reports from the media, their favorite bloggers, or the medical community began to repeat the news to others.

Before long, FOODMAPs was accepted and passed on as fact, for everyone concerned, even though it pertained specifically to those with IBS.

Most people automatically believe whatever a book, the media, or medical experts tell them because we've been trained to believe what we read and hear since we were children. The habit of automatically accepting is firmly ingrained in our subconscious minds now, so we simply believe without thinking.

It's not that people who don't believe in non-celiac gluten sensitivity are being deliberately mean. They just don't realize that the media has put their own personal spin on what they report today.

Super Sensitivity Teaches You to be Responsible For Yourself


When you become more and more sensitive to gluten, you eventually reach a point where you are so tired of chasing after what's wrong with you, that you are ready to be responsible for yourself.

That won't always happen spontaneously.

I chased after a lot of rainbows that the gluten-free community was passing around, when I was still super sick and trying to figure out what was wrong with me.

I eliminated dairy, corn, and soy, but it didn't work.

I was still sick because dairy, corn, and soy was not the problem. Gluten was.

Gluten contamination is rarely about an entire food group. There is usually one or more brands or an environmental contaminate that is causing the issue.

I can still remember when celiac disease was thought to be non-existent in the U.S. Back then, even Dr. Fasano was turning away patients with gluten sensitivity because he didn't believe it existed.

At that time, you either had celiac disease, or you did not.

Today, Fasano is telling people that 20 ppm of gluten is safe to consume consistently for most celiacs and that non-food items like shampoo and hand cream won't make you sick.

However, my own experience has taught me otherwise.

Even though it is difficult to sit back and listen to the misconceptions and false information still being given to celiacs and those with gluten sensitivity, especially when super sensitives are accused of living in fear, I am very grateful that I no longer just automatically believe what I'm told without checking it out for myself, first.

Vickie Ewell Bio


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