Can You Get More Sensitive to Gluten After Going Gluten Free?

Do you feel worse after going gluten free?
Do you think you're becoming more sensitive to gluten?
Perhaps, you're a super-sensitive celiac!

When you first go gluten free, many people feel a whole lot better. The stress of not knowing what's wrong is gone. The body feels relieved because there's less gluten to contend with. It doesn't have to consistently fight off that pesky gluten molecule.

However, for a large segment of the gluten-free population, the relief is only temporary.

Despite your complete vigilance to a gluten-free diet, within a few short weeks or months, you might begin to experience violent symptoms all over again.

You are doing your best to steer clear of gluten. You're sticking to your gluten-free diet, with no cheating. Yet, you're still having symptoms and can't help but wonder if you can get more sensitive to gluten after going gluten free.

In an increased burst of determination, you stop buying your favorite gluten-free specialty product. You stay home on Saturday night, instead of going out with your friends or family, but it doesn't help.

It seems like no matter what you do, or how much you restrict yourself, everything still makes you feel sick.

Bringing up the issue at your favorite celiac forum or blog doesn't help much. Although, these online friends mean well and want to help you, they are convinced that your problem isn't gluten.

Since the reality of super sensitivity isn't a possibility for them, they have already decided that you must be allergic to something else.

They know that you're reacting to something; it's just not the gluten!

But here's reality:

There are many people who experience an overreaction to very small amounts of gluten after going gluten free.

You are not alone!

Going on a standard gluten-free diet can relieve a number of symptoms you were initially experiencing.

But eliminating all symptoms related to gluten ingestion can often require much more detective work than you've been told. It's not always as easy as limiting yourself to foods that contain up to 20 ppm, or less.

Food intolerance is known to cause exaggerated reactions to the substances that you withdraw from your diet, once they are reintroduced. Your friends do have that right.

If you pull something out of your diet that you're allergic to, you'll have an overreaction when you eat it again.

But when it comes to gluten intolerance, and especially super sensitivity, the body can get quite vocal long before the gluten has been completely eliminated.

Autoimmune dysfunction doesn't work like a standard allergy does, but there are many similarities you need to be aware of if you're becoming more sensitive to gluten.

Gluten Sensitivity is a Spectrum

While you do, or don't, have celiac disease or non-celiac gluten sensitivity, the degree of sensitivity to gluten is a spectrum.
It doesn't matter what the actual cause for the dysfunction is. You might have:

• celiac disease
• dermatitis herpetiformis
• a wheat, barley, and/or rye allergy
• non-celiac gluten sensitivity
• lymphocytic colitis
• gluten ataxia

Or any other condition associated with gluten intolerance.

The condition is real. You have it. But the symptoms you get from accidentally eating hidden gluten can range from absolutely no symptoms at all to severely overreacting when exposed to residues of less than 1 ppm.

This is because symptoms are not directly related to the amount of damage that gluten residue is causing.

I've heard that the immune system can go into hyperdrive after a single gluten exposure. The person began to react to almost everything in their diet as a result of one single glutening.

It happened.

There is no way to know ahead of time where you fall in between these extremes, nor if the increased sensitivity you're now experiencing will continue to get worse as time goes on.

For some individuals the extra sensitivity is there to keep you aware and compliant. It doesn't grow. But for others, the phenomenon continues to get worse.

What We Know About Getting More Sensitive to Gluten

The levels of gluten found in a standard gluten-free diet are high enough to trigger symptoms.

Those with a wheat allergy could possibly experience the same phenomenon, due to the way our society is so saturated with gluten. In addition, the allergy labeling law doesn't take second-party ingredients into account, so wheat allergies are as difficult to cope with as super sensitivity to gluten.

The number of people who experience dramatic reactions to trace residues of gluten are no where near the 1% figure that celiac forum members like to quote.

Reliable scientific studies show that many of those who go on a standard gluten-free diet of up to 20 ppm of gluten do not heal, even after 2 to 5 years.

This clearly indicates that they are still consuming too much gluten.

While some studies report figures higher than 40%, its thought that a lack of compliance with a gluten-free diet is to blame for most of the non-healing and continued symptoms that celiacs experience.

Many celiacs have a laid-back attitude when it comes to getting rid of the trace gluten residues in their lives. Plus, some don't see anything wrong with cheating now and then with their favorite foods.

The next highest reason for not healing is accidental ingestion of gluten. Many who believe they are following a strict gluten-free diet are reacting to gluten at a much lower level than 20 ppm.

Although symptoms don't correlate very well with the degree of actual damage done to the body, the:

• intestinal villi
• brain
• skin
• inner ears
• central nervous system
• thyroid gland

can certainly take a huge hit even if you don't physically react to trace residues of gluten.

Symptoms are what the larger majority of gluten-intolerant individuals use to create their personalized gluten-free diet. To date, these symptoms are the best way the body has of communicating with you if you stay aware long enough to listen.

Why Don't We Hear More About Super-Sensitive Celiacs?

Most gluten-free information is for the average celiac
who can tolerate foods up to 20 ppm (10 mg per day)

Most scientists only look at the upper small intestine during celiac and gluten-sensitivity studies. This is because celiac is defined as damage to the upper intestinal wall, but gluten can damage other parts of your digestive system as well.

So far, the interest has been in finding a “cure” for celiac disease or some type of pharmaceutical drug that can cut down on the damage done by ingesting low gluten residues, so that restaurant owners and other businesses can regain lost profits.

The topic of super sensitivity hasn't been actively studied within the scientific community at all.

The one study that exists was focused on something other than super sensitivity. It was looking at Refractory Celiac Disease to see if there was a dietary intervention that would help.

This lack of scientific evidence has caused most people to be unaware of the tiny amount of gluten that is able to initiate symptoms in a gluten-sensitive individual.

Much of this lack of understanding is due to the fact that most of the information outside of science handed out by celiac organizations, experts, and researchers only pertains to the average celiac, so it supports Big Business, rather than those who are more sensitive.

This info isn't applicable for those who don't fit into that tight little 20 ppm box. In fact, for the the most part, super sensitivity has been swept under the rug, but it won't be for long because the latest research coming out does support the existence of super sensitivity.

Differences in Defining Gluten Sensitivity

The general consensus within the celiac community is that some people do become more sensitive to gluten as time goes on, but no one really knows why.

Up until lately, super sensitivity was thought to be very, very rare, so there wasn't much interest in discovering what was going on.

The majority of celiacs define sensitivity as an increased reaction when ingesting something that contains over 20 ppm of gluten, or when someone eats too many products that contain that amount.

For these individuals, their extra sensitivity manifests as an exaggerated reaction.

These reactions are more violent and uncomfortable than they were before starting a gluten-free diet, which is why celiacs will often refer to themselves as being extra sensitive. They are talking about how bad their symptoms are.

They are not referring to reacting to minute amounts of gluten.

Interestingly, this is the same type of increased reaction that those with food allergies or food sensitivities experience. The longer you stay away from the offending substance, the more violent your reaction is when it is reintroduced.

This is the principle behind elimination diets.

It's the overreaction to certain foods or chemicals that an elimination diet points out.

For some celiacs, reactions will begin to occur at a lower level of gluten exposure than for others. These celiacs have to stick with certified gluten-free foods and avoid products made on shared equipment or in shared facilities.

In general, this level of super sensitivity is accepted by the general celiac population as being a sub-set of themselves.

It still benefits the food manufacturer, since lots of products are being certified to 10 ppm or less, and this type of gluten sensitivity doesn't seem to be progressive.

If it is, the progression is very slow.

For some individuals, sensitivity travels beyond the realm of what the average celiac considers extreme, especially if it is progressive. These celiacs react to very, very low levels of gluten residue, between zero gluten and 10 ppm.

However, these people tend to be rejected or criticized by the celiac community, branded as a heretic if they try to share their personal experiences and told that what they are experiencing is not due to celiac disease.

It is due to something else.

Why Doesn't the Celiac Community Recognize Super-Sensitive Celiacs?

If you have never heard of a super sensitive celiac, and I'm talking about reacting to very low trace levels of gluten, that is because the celiac community doesn't believe that level of sensitivity exists.

Or at least, they won't publicly recognize that we exist.

The FDA, in their study regarding gluten reactions, found that the only way to protect ALL people with gluten intolerance issues was to define gluten-free food as less than 1 ppm. But when the labeling law for "gluten free" was drafted, the study was quietly ignored, even by the FDA themselves.

Celiac forum members and bloggers often insist that you must ingest gluten to ignite an autoimmune response. This is what they always use to defend their position that super sensitives are overreacting or living in fear.

Transferring gluten to your hands by touching something that someone else has touched after they ate food with gluten isn't real to them. They don't want to think about all of the ways that we accidentally get gluten all over us. The most that average celiacs will accept is airborne flour contamination.

In an attempt to downplay this level of reality, ultra-sensitives have been tossed into a group labeled anecdotal evidence. As one forum member proclaimed:

“Anecdotal evidence is the lowest on the totem pole of the scale of reliable scientific information.”

The average celiac believes that if research scientists – which are often funded by the drug and food industries – haven't studied the topic of super sensitivity and found it credible, and if authoritative figures within the celiac community are not alerting those with gluten intolerance about the potential for that degree of reaction to cross contamination, then it doesn't exist.

To them, your personal experience isn't credible.

Here's what's wrong with that position:

Dr. Fasano Accepts Super Sensitivity to Gluten

The gluten-sensitivity spectrum is called a "bell curve" by Dr. Fasano, the director of the Center for Celiac Research and Treatment at Massachusetts General Hospital. He is the one who did the research on Refractory Celiac Disease and discovered that there is a large subgroup of individuals who are more sensitive to gluten than he thought:

"When we recommended <20 ppm as the gluten threshold, we were aware there could be a subgroup of people who react to even lower levels."

This is basically what the FDA said, as well.

Research studies look at averages and not how each particular individual within a study react to what's being observed. Plus, in Dr. Fasano's own research study on Refractory Celiac Disease, almost all study participants that he put on his dietary intervention for super sensitivity began to heal.

So what's the real reason for rejecting super sensitivity?

Super Sensitivity Isn't Good for Business

My guess is that the real reason behind this strong rejection by the thought-leaders, bloggers, and forum members that I have come in contact with over the years has something to do with the relationship that celiac organizations, including gluten-free certification associations, have with the food industry.

The major players like General Mills wanted the legal definition for the term “gluten free” to be set at 20 ppm, or less, so they could reap the profits from using sketchy manufacturing techniques, such as mechanical sorting of oats and non-testing loopholes.

Other companies, such as Bob's Red Mill and Nature's Valley, are also doing the same thing today. In fact, Schar announced a while back that they had added gluten-reduced wheat starch to their croissants.

Previous to the labeling law, wheat starch was not acceptable in gluten free products, even gluten-reduced wheat starch, which is what manufacturers are using today.

At one time, Bob's Red Mill had a notification on their website explaining that their brand of Xanthan gum was grown by feeding the bacteria gluten-reduced wheat starch.

That notification has now been removed.

During that time, they were marketing to people who are allergic to corn products instead of those allergic to wheat.

Bob's has a Xanthan gum page where they now claim that as of August 1, 2018, "our xanthan gum is fed a carbohydrate substrate produced from non-GMO corn."

When it was grown on wheat starch, I reacted to it with the same violent intestinal symptoms I get when glutened, so I switched to Now Foods xanthan gum, which is raised on corn starch.

I have no intention of going back to Bob's products, due to their continued use of mechanical-sorted oats that they silently brought into their gluten-free facilities and began cutting their gluten-free oats with.

Other companies are confused by these for-larger-profit activities and as a result, they are adding barley extract to their products and labeling them “gluten free” because the finished product comes within the FDA parameter of 20 ppm of gluten.

This behavior is actually illegal, but points out the necessity of having to read a product's ingredients instead of just trusting in their proclamation on the label that the product is gluten free.

Research is vital because even certification organizations are becoming more lax as time goes on, and they are accepting standards they didn't accept before.

The body can certainly become more sensitive to gluten after you go gluten free, but these manufacturing tricks allow manufacturers to compete in the world market.

Plus, confusion about what's gluten free and what is not, might also play a role in what's going on when people become more sensitive to gluten.

While the mind can be persuaded and fooled by advertising slogans and proclamations, the body cannot. 

Most of the celiac community has fallen for propaganda out of fear that manufacturers will pack up their gluten-free products and go home.

And as a result, those with super sensitivity to gluten remain completely ignorant of what it takes for them to heal.

We're told by celiac authorities that what's going on right now is necessary and in the best interests of the whole gluten-free community, but at what cost?

It seems to only be in the best interest of the manufacturer, especially since more and more people on gluten-free diets are not healing from eating at that level of gluten contamination, even after being gluten free for 5 years or more.

Truth About Super-Sensitivity

Fighting for your favorite gluten-free products 
harms super-sensitive celiacs

The celiac community doesn't want to discuss these low-grade chronic gluten residues that show up in so-called safe gluten-free food.

Instead of looking at the possibilities for cross-contamination in their favorite products, it is easier to brand those going against the party flow as having additional food sensitivities instead of being glutened by low levels of contamination.

Some have even been accused of having a psychological or emotional issue in dealing with their condition.

While that might be true for a small handful of celiacs, especially in the beginning of a gluten-free diet when life has been turned upside down, the average celiac cannot relate to what you are going through.

Try to tell them how you are getting more sensitive to gluten as time goes by, and they'll drag out the conditioned response that you must be allergic to dairy, corn, or soy because they can eat what you're reacting to and they are just fine.

If it's not happening to them, it doesn't exist.

In fact, typical celiacs love to brand super sensitives that do what's necessary to avoid getting sick as living in fear. It helps them to avoid having to look at their own diet and self-destructive behavior.

The truth?

We know very little about gluten sensitivity, celiac disease, and dermatitis herpetiformis. We know even less about super sensitivity.

Most of what you hear coming out of the celiac organizations and from popular bloggers about increased sensitivity is just fantasy.

While they do believe that you can become more sensitive to gluten after going gluten free, there are a wide variety of stories as to why this occurs.

But no one really knows why it happens.

If you're a super-sensitive celiac or have dermatitis herpetiformis or a wheat allergy, you obviously can't turn a blind eye to what's going on.

You have to take the necessary steps to uncover where gluten residues hide in your environment, and then eliminate that gluten from your life, despite the adversity and opposition from those who should be supporting you.

That's a no-brainer.

But the path of super sensitivity to gluten can feel extremely isolating and frustrating because not only does the sensitivity continue to grow worse as you clear out the potential offenders, but discovering the culprits that are causing you to react involves a lot more detective work than what the average person on a gluten-free diet is willing to do.

Once you reach a certain level of gluten sensitivity, “no gluten ingredients” on the label is not enough to keep you safe.

Almost everything that has been manufactured in a factory is contaminated with some level of gluten residue.

In addition, if you depend on the word of company representatives and trust them when they tell you a product you're researching is gluten free, you're setting yourself up for a host of aggravating symptoms.

Company representatives use the phase “gluten free” only in the context of 20 ppm.

A lot of people forget that.

The Bottom Line: Can You Get More Sensitive to Gluten After Going Gluten Free?

YES! You Most Certainly CAN get more sensitive to gluten after going gluten free.

But unfortunately, cross-contamination with gluten can be extremely inconsistent.

What you don't react to today, you can react to tomorrow because the level of contamination in a food or product will differ from package to package or item to item on any given day. Your environment contaminants will also vary on a daily basis, or even minute to minute.

That can make tracking down the culprit extremely frustrating and difficult.

Gluten has become so infiltrated into our food system, that it's nearly impossible to get rid of it. For super sensitives, even whole foods can be problematic if grown in wheat straw or contaminated at the grocery store.

Cleaning up the diet can leave you with a very limited variety of safe foods, depending on your degree of sensitivity.

How far you are willing to go to get rid of ALL your symptoms is up to you, of course, but from my own experience, it has been worth every gluten molecule I've uncovered and eliminated from my life.

So what about you?

Are you a super-sensitive celiac? Or can you eat a standard gluten-free diet without any problems? 

I'd love to hear your story in the comments.