The 3 Faces of Celiac Disease: Which One Are You?

Everyone reacts to gluten residues differently;
there are 3 major groups, which one do you fall in?

It's kind of mindblowing when you stumble onto a web page published by a major pillar in the celiac community claiming that:

“Even if some infinitesimal amounts of gluten are inhaled it's inconsequential for persons with celiac disease because the amount will never reach the minimal threshold of 10 mg per day needed to cause harm.”

That was stated by the University of Chicago's Celiac Disease Center in reply to someone asking whether you can get glutened by just smelling wheat bread.

This organization is considered authoritative by a large majority of the celiac community, so anything they say is taken as gospel.

While I appreciate their token nod in the direction of the possibility that one can inhale infinitesimal amounts of gluten, something most celiacs don't believe can ever happen, they lumped the entire celiac community into a single entity that won't incur harm until gluten consumption reaches 10 mg per day.

I found that statement quite shocking.

Not only does it ignore what I call the 3 faces of celiac disease, but it was a clear-cut misrepresentation of the results of an important scientific study carried out in 2007.

As if that wasn't bad enough, they also had a few inaccurate biological things to say:

“In addition, inhaling is not ingesting.”

It's not?

Their justification for making this claim was that the official medical definition of celiac disease requires physical damage to the villi and crypts in the upper small intestine.

That much is true.

If your villi and/or crypts are not inflamed, blunted, and/or destroyed, you won't be diagnosed with celiac disease, even if your blood work shows high antibodies to gliadin.

That doesn't mean you don't have non-celiac gluten sensitivity, but that's a different diagnosis. Since this is a celiac disease center we're talking about, their focus is on celiac disease only.

However, even in the case of celiac disease, their biology doesn't hit the mark because:

Anything you breath in will hit the back of your throat and likely get swallowed.

They do know that, as they had to do a bit of back peddling in the comments to make their prior statement appear to be more accurate.

What you inhale, they concluded with, “is only an issue IF one spends a significant amount of time in an environment where gluten-containing flour is airborne, such as a bakery.”

They admit that airborne gluten can be ingested, but claim that you won't react to those flour particles unless you spend a lot of time inside a bakery. If you just go in and buy a loaf of gluten-free bread, you won't have any problems.

That's hogwash!

I react violently to airborne flour. So violently, in fact, that I had to quit my job at a boys' home I used to work for because the boys were always baking cookies or quick bread over the weekend.

It was not a bakery.

It was just a regular home.

What these experts are really saying is that the average celiac is the only type of celiac disease that exists!

What's Really Going On?

This is what I call generic advice.

The generic advice that celiac experts, organizations, and even bloggers dish out is based on the assumption that most celiacs can handle a certain amount of gluten every day without resulting in enough inflammation to damage their villi or even produce symptoms.

The definition used for gluten-free labeling is what's used to justify their nearsighted focus.

What the University of Chicago folks are talking about originally came from celiac experts and researchers who claimed that low levels of gluten are safe for most celiacs.

But most is the key word here. Low levels of gluten are not safe for ALL celiacs.

There is a large variance in the amount of gluten a particular individual can consume on a daily basis without suffering physical damage and other consequences.

Even the 2007 study that looked into safe gluten levels, which Dr. Fasano took part in, clearly stated that individual variability was clearly seen in their small sample of celiac participants.

What Does the 2007 Fasano Study Actually Reveal?

Scientific studies are designed to test an hypothesis, but they do that by trying to show that the hypothesis is not true. In this case, the objective of the 2007 trial performed by Dr. Fasano and other researchers was a bit different.

There was nothing to disprove.

What the researchers wanted to do was establish a safety threshold for prolonged exposure to trace amounts of gluten because their prior study had shown that 100 mg per day was too much.

One-hundred milligrams of gluten per day is a little more than  3 breadcrumbs.

The amount of gluten the researchers gave participants was not trace amounts, but in the literature, that's what they called it.

Thirteen individuals consumed 10 milligrams of gluten per day, on top of a 20 ppm gluten-free diet. Another 13 participants took 50 milligrams per day, on top of a 20 ppm gluten-free diet. And 13 were fed a cornstarch-filled capsule instead of any gluten at all.

The criteria that participants had to meet to qualify to participate in the study was designed to prevent tainted results, so they used healthy celiacs who were NOT super-sensitive to gluten.

Even so, there was a wide variety of responses to the amount of gluten they were given.

“Some CD patients showed a clear-cut worsening of the small-intestinal architecture after ingesting only 10 mg of gluten per day, whereas others had an apparent improvement in mucosal histology after the 3-month challenge with 50 mg of gluten per day.”

One person challenged with 10 mg per day had a complete relapse, but refused to submit to another biopsy, so his reaction wasn't added to the data.

That was 1 out of 27 individuals who reacted so violently to 10 mg per day, that they quit the study.

In terms of data, 1 out of 27 would be about 4 percent of the celiac population, which doesn't include those whose small-intestinal architecture got worse.

In the quote above, the researchers admitted that “some CD patients” had problems at the 10 milligram level.

Not just one.

This means the degree of super sensitivity among the celiac population -- those who cannot tolerate gluten at the 10 mg per day level -- is most likely greater than 4 percent, rather than the 1 percent which is so often quoted within the gluten-free community.

This is what I learned from the study.

With the very small sample size of 13 individuals for each group, however, the researchers couldn't determine with any degree of accuracy how toxic gluten ingestion of 10 mg per day would actually be even for the average celiac.

Yet that's the 10 mg figure that is quoted over and over again as being safe, even by the researchers themselves!

Nor could they determine how many of those who reacted to being given 50 mg per day would have reacted in the same way to a much smaller dose.

And yet the celiac center at the University of Chicago referred to ingestion of 10 mg of gluten per day as being safe for everyone.

What are the Three Faces of Celiac Disease?

There are 3 different groups of celiacs;
each group reacts differently to gluten residues

I've been eating gluten free for over a decade now, and in that length of time, I've seen three distinct groups of celiac individuals. Each of these three groups react differently to trace amounts of gluten.

While all benefit from going on a gluten-free diet, the degree of gluten awareness they have to maintain and their quality of life after eliminating gluten isn't the same.

Which group you fall into isn't a matter of how violently you react to gluten.

Additional subgroups could be formed within each of the three major categories because symptoms are just as divisive within each group.

In a way, celiac disease tends to be a spectrum within a spectrum, and that goes for super sensitivity as well.

Group #1: No Symptoms or Very Minor Reactions When Glutened

One group of celiacs seem to respond incredibly well to a standard gluten-free diet.

You'll heal quickly, regardless of the amount of villi damage you originally had, and become less sensitive to gluten contamination as time goes on.

Eating products made on shared equipment or in a shared facility is never an issue for you. You continue to eat out and attend social functions, after diagnosis. You only have to be mindful of gluten in a general way because you either have no symptoms when glutened or experience very few uncomfortable reactions.

For that reason, very few of these people have been diagnosed.

When they are diagnosed, they have a difficult time adjusting to the limitations, since they don't feel bad when they eat gluten.

Those with minor symptoms, such as a headache or general feeling of tiredness, often choose to put up with the symptoms in exchange for occasional cheating.

Others who care about their health status worry about whether they are accidentally glutening themselves since there is no way to know other than through regular blood tests or additional biopsies.

As a whole, this group tends to be quite young.

If that's not true for you, maybe you were lucky enough to have been diagnosed shortly after the celiac disease triggered and before gluten damaged more than just the villi in the upper small intestine.

Many in this group only discover they have celiac disease when having their iron levels checked or when being tested for an entirely unrelated condition.

When people with non-celiac gluten sensitivity fall into this category, the symptoms are so mild, they treat it more like an allergy than an autoimmune condition.

Group #2: The Average Person with Celiac Disease or Non-Celiac Gluten Sensitivity

A second group responds to a gluten-free diet reasonably well.

If you belong to this group, you might take longer to heal than the first group, but can be symptom free within 6 months to a year. Sometimes, two.

The physical damage takes a bit longer to recover from, maybe a couple of years, or more, but you'll feel fine eating at up to 20 ppm of gluten, so you don't really worry about how long the healing process is taking.

The recommendation for the average celiac is that you avoid dairy products for the first 6 months and gluten-free oats until you heal, but you don't really have to limit yourself when it comes to eating gluten free.

You can occasionally go out to eat at restaurants with a gluten-free menu, provided personnel do a reasonable job at avoiding cross contamination in the kitchen.

You might get glutened, now and then, with symptoms ranging from mild to extreme, but you don't really have to avoid social functions or family gatherings because for the most part, trace amounts of gluten contamination are not a problem for you.

For example, you can walk down the flour aisle at the grocery store without experiencing any issues, and you can sit next to someone who is eating gluten in their food. You can also live in a mixed household and do fine.

While a buffet may or may not be problematic, depending on your food choices, you can easily bring your own food with you and still be okay.

Eating an abundance of gluten-free products might bring on temporary symptoms, but cutting back on processed foods seems to be enough to restart the recovery process.

Since you can tolerate 20 ppm of gluten before experiencing symptoms, you usually don't have to pay special attention to the gluten in your personal care products, except for maybe lipstick and hand cream.

You don't react to the steam from a pot of boiling pasta, and you can eat fresh produce that sits near the grocery store's in-house bakery without problems.

Even a pre-cooked rotisserie chicken is fine for you.

Your frustrations with having to be gluten free are more about people not taking your disease seriously than it is about tracking down the trace amounts of gluten in your food.

If soy or corn is problematic, you simply cut out those food groups, and your temporary symptoms resolve themselves in record time.

Your passion is finding gluten-free foods or gluten-free recipes that can replace the gluten foods you used to eat before going gluten free.

For that reason, keeping gluten-free products on the shelves is your number one priority. Meal planning and what to cook for the holidays or how to handle group events is also a major interest.

While you did have to replace much of your kitchen when you first went gluten free and have to take all of the general precautions recommended by celiac organizations, specialists, and research scientists, that's about as far as you have to go to avoid gluten exposure.

Chronic, low-grade gluten exposure appears to be easily dealt with by your body because your annual blood tests and/or repeat biopsies always come back clean.

Lengthy recovery from an accidental glutening or the severity of your symptoms is what this group uses to define super sensitivity among them.

This group tends to quote from celiac experts they look up to, such as the celiac center at the University of Chicago.

For the most part, this middle group is where the majority of celiacs live.

Group #3: Super-Sensitive Celiac (Includes Dermatitis Herpetiformis and Severe Gluten Sensitivity)

True super sensitivity is a complex issue because most of these individuals get progressively more sensitive to gluten as time goes on.

Unlike the average celiac, once super sensitivity sets in, you start to react to most foods and non-food products that contain 20 ppm of gluten.

This makes it difficult to discover safe foods.

Confused by what's happening, you might listen to the advice offered by Group 2, thinking that there must be other issues going on other than gluten contamination.

While that may or may not be true, many in this group waste several years chasing additional diagnoses and additional food sensitivities, rather than tracking down the trace residues of gluten in their food.

While you might be able to occasionally use products that are certified to be gluten free up to a level of 5 or 10 ppm, others cannot.

In general, most of the celiacs in this group do not eat out unless there is no other alternative. It is very rare for you to be able to eat food prepared by others and not react to some degree.

Social functions or family gatherings often have to be avoided completely.

While some are able to take their own food with them to social functions, and some have family and friends who are conscientious enough to keep food safe, others cannot be in situations where gluten foods or airborne flour particles are even present.

Flour can remain airborne for up to 2 or 3 days, and it settles on everything in the environment. It is very difficult to avoid in an average kitchen setting.

Super-sensitive celiacs do not do well in mixed households.

Almost always, you have to live in a completely gluten-free environment. Otherwise, you stay sick and reactive.

Since sensitivity levels vary within this category, the degree of avoidance within a particular household setting depends on where you are on the path of super sensitivity.

For example, some super-sensitives can handle a few condiments and sauces, while others have to make all of them from scratch.

Eating foods produced on shared lines or in a shared facility with other gluten products almost always causes some degree of a reaction. Since low-gluten residues are accumulative, most use very few processed foods.

Recovery tends to be lengthy and uncomfortable due to the hardships of tracking down the traces of gluten in your diet.

Plus, the resistance from the general celiac community and their assurances that you are actually reacting to something else can distract you from discovering which foods still have super low residues of gluten.

Research is difficult due to the lack of information available.

You might react to the steam from a boiling pot of pasta, as well as the gluten residue found in household items, on the outside of a food's packaging, and clothing.

Hair and even dish towels are notorious for gluten residues as anything touched by another person after eating something with gluten will leave traces of gluten residue behind.

If a super sensitive touches her hair or that spot someone else touched without washing their hands immediately afterward, the gluten fragment can accidentally be ingested later on.

Foods grown with wheat-straw mulch or manure can also be problematic due to the dust.

Compost is also a problem, depending on what foods and non-food products were composted. Heat doesn't kill gluten, so compost can be concentrated sources of gluten. This makes growing your own food as difficult as finding safe sources commercially.

The waxes on fresh fruits and vegetables, pesticides, wheat dust from a nearby farm, pet food and treats, vinegars, coffee, gluten-free grains, and many other things not problematic for the average celiac can cause reactions.

Many super sensitives are also lactose intolerant.

Do You See Yourself in One of the Three Faces?

Separating celiacs into these three groups isn't meant to be divisive.

It is just what I've observed over the years.

The groups are sort of like personalities and characteristics that are visible and commonly found among those who belong to each of these three major groups for celiac disease and/or non-celiac gluten sensitivity.

While you may not have all of the traits associated with any one category, if you can see yourself in one of the faces, the point is that:

You are not alone.

There are a large crowd of folks just like you in each group.