What is a Super-Sensitive Celiac? [That's WHY I Started this Blog]

Do you think you're getting more sensitive to gluten?
If so, you might be a super-sensitive celiac!

There is no official definition for a super-sensitive celiac.

Are you shocked to hear that?

Each person I've run into on my celiac journey defines sensitivity to gluten in their own way. This can make it difficult to determine if you are a super-sensitive celiac, or not.

Some people judge their sensitivity by how violently they react to being accidentally glutened. This seems to be the prevailing definition within the celiac community.

Others, like myself, define super sensitivity as the amount of gluten residue it takes to set off an autoimmune response. For a super-sensitive individual, that amount will be very, very small.

There are also celiacs who consider themselves more sensitive than average because they have been on a gluten-free diet for over a year and still haven't healed.

Some individuals define extra sensitivity as having to use only (or mostly) gluten-free certified products, while others call themselves sensitive because they can't live in a mixed environment or go out to dinner without taking a risk of being accidentally glutened.

I happen to fall into ALL of these groups.

The problems associated with being super sensitive to gluten are far too numerous and complex than to simply assign an individual to one of these groups, so I'm honestly not going to try and do that.

I will tell you that 99.9% of the time, the issue isn't a different food sensitivity.

The problem is gluten!

So if you're wondering if you might be a super-sensitive celiac due to falling into one of the above categories, or even a combination of categories, stick around.

This blog is dedicated to helping you find all of the trace sources of gluten in your life, so you can eliminate them and begin to live again today.

Super Sensitivity is a Spectrum

Sensitivity appears to be a spectrum. This is why it cannot be defined in a singular way.

Each person's body reacts differently to ingested, inhaled, or absorbed gluten, but the degree of sensitivity tends to follow a very specific path.

Within the full category of super sensitivity, you'll find a wide variety of individual responses to trace amounts of gluten, depending on where you are at on that path. You'll also find a wide variety of responses to individual gluten-free foods.

In general, beginners can handle up to 20 ppm of gluten in a single serving of gluten-free food, but this isn't always the case.

While most of the readers here will be those who have been gluten free for over a year, or more, if you're new to eliminating gluten and you or your loved one is still sick, we can help you, too.

We are NOT going to send you on a wild goose chase and tell you to check out additional food sensitivities. That is the common advice given to newbies, and most of the time, it's not good advice.

Instead, we are going to give you the facts about being gluten free, and then let you decide whether to act on the information, or not.

We are also going to share our own personal experiences with gluten and food sensitivities, so you can determine if seeking out all trace amounts of gluten in your life is the right choice for you.

What is the Path of Super Sensitivity to Gluten?

Ever-increasing sensitivity to gluten means that as you continue to eat gluten free, you'll begin to react to smaller and smaller amounts of gluten in your diet and environment.

Where you could initially eat anything that contained up to 20 ppm, you'll have to rein that in eventually and maybe start by eating up to 20 ppm two or three times a week.

From there, as the path continues, the amount of times you can eat up to 20 ppm will get further and further apart until you reach a point where 20 ppm will be too much gluten residue for you at all.

At that point, you'll have to limit yourself to up to 10 ppm of gluten. And from there, maybe 5, or less.

However, there are a few individuals who experience the reverse to this.

Instead of getting more sensitive to gluten, they get less sensitive as time goes on and their immune system relaxes. There are not as many who experience this reverse phenomenon, but there are some.

The reverse isn't as pleasant as it sounds because it's more difficult to determine when food is dangerous for you.

Just because you don't react to gluten residue with physical, mental, and emotional symptoms doesn't mean that damage isn't occurring to your small intestines.

Any degree of gluten ingestion, even trace amounts, almost always produces damage to some extent somewhere in the body.

Celiac disease is defined as damage to the upper small intestines or skin, but gluten intolerance can result in harm to any cell in your body! Any body organ or any body system is in danger when you consume too much gluten for you.

It's just that super sensitives, according to the FDA, react to levels of gluten that fall below their damage threshold.

In our society, it is almost impossible to be truly gluten free unless you raise your own animals and grow your own food.

Many super sensitives have to do exactly that.

But for most of us, doing everything ourselves isn't practical. I have no interest in making most of our condiments from scratch, for example, so hubby and I accept a certain level of gluten contamination in our lives.

You might decide to make a different choice. And that's fine.

The amount of gluten that can be in your food without you reacting to it will get less and less if you continue to listen to the generic advice that assures you that 20 ppm of gluten is safe for everyone every single day.

It's not.

Currently, I can eat up to 10 ppm frequently and up to 20 ppm only occasionally. This is where my own progression stopped -- at least, for now.

Can You Slow Down the Progression of Super Sensitivity?

The good news is that you can slow down the process of getting more and more sensitive to gluten, so that eventually, once you discover all of the small ways gluten is sneaking into your life, your body will be able to manage the amount of contamination that is still occurring.

Essentially, your body will be able to clean up the mess or you'll reach a point where gluten contamination is less than what you react to.

The path of super sensitivity is a path of ever-increasing sensitivity.

Therefore, if you do not do everything you can to eliminate the trace levels of gluten in your life, you'll continue to grow more sensitive to gluten as time goes on.

And you'll stay sick.

You literally will not heal unless you find and eliminate all of those traces that are making you feel ill.

This has been my own personal experience.

The fact that super sensitivity is progressive doesn't mean that you will eventually have to live in a completely gluten-free environment. That does happen, since super sensitivity is progressive, but there are ways to slow down that progression.

How Does the FDA Define Super Sensitivity to Gluten?

When the FDA was researching the issue of reactivity to gluten, so they could formulate a standard gluten-free definition for the labeling of gluten-free food by manufacturers, part of that research included a health-hazard assessment for gluten exposures.

They only looked at individuals with celiac disease, and not those with non-celiac gluten sensitivity, but their findings clearly indicate that super sensitivity is real:

“In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with CD on a GFD that protects the most sensitive individuals with CD and thus, also protects the most number of individuals with CD from experiencing any detrimental health effects from extended long-term exposure to gluten.”

[You can download that 93-page FDA Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease here.]

The report clearly states that super sensitivity exists and that the most sensitive individual will have to limit themselves to less than 1 ppm of gluten to heal.

The report also goes on to state that super-sensitive celiacs react to a level of gluten that is below the level that actually sets off an autoimmune response for them. Those studied reacted at 0.15 ppm, while damage in the same individuals didn't begin until 0.4 ppm.

In other words, those who are super sensitive have such a strong will to live that the body forewarns them ahead of time that they are getting too close to the level where gluten is going to harm them.

Being symptomatic doesn't mean that you have damaged your intestines.

But since there is no way to know at what level damage begins for your particular super sensitivity, it's safer to avoid anything that causes any reaction at all.

The FDA chose to use a different method of defining the term gluten free, one that is more favorable to business and protects the greater majority of those with gluten intolerance, rather than everyone.

This is why the labeling law says gluten free is up to 20 ppm of gluten residue. This decision has really caused a lot of problems for those of us who are more sensitive than the average celiac.

How Does the Gluten-Free Community Feel About Us?

Unfortunately, the FDA's acknowledgment that super sensitivity is real and that it comes with a potential for detrimental health effects from exposures as tiny as 1 ppm hasn't influenced the gluten-free community's acceptance of us with that degree of sensitivity.

Most people within gluten-free circles of influence, including those with celiac disease, do not believe that extra sensitivity, as I have defined it above, even exists.

They accept the fact that many celiacs do not heal within the first five years of going gluten free.

They also accept the fact that some celiacs react violently to products with a gluten residue of up to 20 ppm of gluten, so these individuals have to confine themselves to using only gluten-certified products.

But they do not accept the fact that super sensitivity includes individuals who react to extremely tiny levels of gluten contamination, such as you might find in pasta steam or the way coffee is harvested and processed.

The divide occurred quickly once the FDA turned their backs on those they originally called the most sensitive in their study's findings and went with a definition for gluten free that would pave the way for hundreds of low-gluten products to come to market.

The reasons for the split isn't hard to see.

The FDA decided to use a definition that would benefit the manufacturer and give the greater portion of the celiac community what they wanted -- hundreds of gluten-free products to choose from.

The current FDA labeling law for manufacturers enables the average celiac to recreate the diet they were on before going gluten free.

But this stand leaves the minority of us at risk.

Rather than support all of their members or readers:

• celiac organizations and associations
• celiac magazines and their authors
• gluten-free certification organizations
• celiac medical and educational centers
• scientific researchers and journalists
• celiac specialists and experts
• forum owners and moderators
• most gluten-free bloggers

all chose to side with the food industry giants, such as General Mills, and began to repeat their rhetoric.

Suddenly, it was no longer acceptable for super sensitives to question the viability of the popular gluten-free definition that confuses the public and newbies alike since pasting "gluten free" on the label doesn't mean that the food is free of gluten.

It just means that the food contains up to 20 ppm of gluten residue, unless it's certified by a celiac certification organization to contain less than that.

Those who continue to disclose the potential problems that the labeling law causes for those more sensitive to gluten find themselves ostracized from the main body and labeled selfish and fearful.

This is still occurring today.

We are told that we are only thinking of ourselves and not the gluten-free community at large. Or we're accused of having additional food allergies or having both celiac disease and non-celiac gluten sensitivity at the same time since we do not fit the norm.

While many see the labeling law for what it is – a marketing trick – and try to speak above the noise, they are drowned out by those insisting that defining gluten free as up to 20 ppm is absolutely necessary for the health of the gluten-free community at large.

What this level of gluten residue does is create more and more people who are super sensitive to gluten.

According to the argument, true gluten-free food is costly and too difficult to test for, so fear that manufacturers will start pulling their gluten-free products from grocery shelves and shut down their processing plants was used by many of the celiac leaders and bloggers to push the labeling movement forward.

Human nature tends to believe authority, so it wasn't hard to get the fear moving through the gluten-free community like a rushing ocean wave, especially when Dr. Fasano, a research scientist and consultant for General Mills, came out in defense of the new labeling law.

Once he did that, the gluten-free community buried those of us with super sensitivity and told us to be still.

What surprised many of us was that Dr. Fasano's public statement claimed there was no accurate tests for products at less than 20 ppm, even though that is what most of the certification agencies actually do:

They certify products that are up to 10 ppm, or less.

But how can they do that if there are no accurate tests for that?

Justifications, among many, include the idea that the labeling law is a step in the right direction.

NO. IT ISN'T.

Manufacturers were already holding themselves to the "up to 20 ppm" standard found in other countries, so the labeling law was a “win” for Big Business.

It increased their profits because it doesn't require manufacturers to test their products at all!

This is a loss for the celiac community because now we are divided:

There are celiacs and super-sensitive celiacs.

And it shouldn't be like that.

Why Did I Start this Blog?

Here's why I started the Super-Sensitive Celiac blog

Celiac disease is a path of self-healing.

Despite the many accusations from traditional celiacs that super sensitives over-react to their gluten-like symptoms and try to blame gluten for reactions more likely caused by additional food sensitivities or an unhealed intestinal tract, I did try to find a reason, other than gluten contamination, for not healing.

I spent three years of my life chasing after potential food intolerance that might have been causing the continuing gluten-like reactions I was having. By doing that, I eliminated:

• aspartame and other sugar substitutes
• all dairy products
• all sources of soy, including organic
• as much corn as I could manage to find

Corn was the most difficult of these four categories because it's far more prevalent in the American diet than gluten is.

However, getting rid of these things did not improve my gluten-like symptoms or health.

What did improve my symptoms?

Eliminating most gluten-free products and tracking down individual culprits of gluten contamination that I had brought into my home.

For example, I ended up eliminating:

• uncured thick bacon
• Hidden Valley Ranch dry salad dressing mix
• all gluten-free cereals, including organic ones
• Great Value ground coffee
• Bob's Red Mill xanthan gum
• Bob's Red Mill gluten-free oats
• sorghum flour (all brands)
• ground flaxmeal
• psyllium husk powder
• a local brand of butter

Eventually, once I learned that Bob's Red Mill was cutting their gluten-free oats with mechanical sorted oats, and not sharing that information, I eliminated all Bob's Red Mill products as well. 

All of them -- because if Bob's is using mechanically sorted oats (which are not gluten free for me) and bringing them into their gluten-free facility, then nothing in that facility is safe for me.

NOTHING!

I did the same thing with Nature's Valley, who has been using mechanically sorted oats for a very long time and not sharing that information, until asked.

The result was amazing.

For the first time in my life, since starting the gluten-free diet journey, my stomach wasn't upset and the pesky cramping and strange bouts of inflammation were gone.

When dairy inflames me, like it is right now, then I know that something is wrong with my lifestyle again.

Gluten is sneaking in somehow. 

Gluten contamination is accumulative, however. It can be that I've been eating too many gluten-free products too often. Reacting to dairy doesn't necessarily mean that I'm eating something wrong.

It can also mean that I need to go back to basics for awhile and let everything calm down.

I've been gluten free for over 10 years now, and it's easy to relax too much when things are going well.

Since the greater majority of celiacs can't see beyond their frozen pizzas, flaky croissants, gluten-free menus, and Cheerios, those of us who react to tiny residues of gluten, either by themselves or when they accumulate, are often pushed aside as being only 1% of the celiac community.

This is seen as insignificant.

I don't know where that 1% figure came from. The first time I ran into that statistic was at the Celiac Support Group at the Delphi Forum, but I haven't been able to find any documentation to back that statistic up.

From what I've seen over the years in celiac forums, blog posts, or the comments left on articles and blogs, there are a lot more people who are super sensitive to gluten than 1 out of 100 celiacs.

I think people are simply too nervous to speak up because they are often confronted by the general celiac community when they do. Many times, the replies I've personally gotten have been quite rude:

“Do you EAT your shampoo?” one woman asked me, when I shared with someone how I handle the gluten-in-shampoo issue.

Other times I have been told that gluten can't stick to a doorknob or dish towel, or that there is no scientific evidence to back up the idea that fruits and vegetables mulched with wheat straw or grown in horse manure can cause you to react.

When I tried to research super sensitivity a couple of years ago, I ran into a lot of information, strategies, tips, and ideas for the average celiac or person with non-celiac gluten sensitivity, but a super-sensitive celiac had few options.

It's still the same today.

There is very little reliable information on the web that specifically pertains to the condition of increasing sensitivity to gluten residues and what to do about it.

While a Super Sensitive Section does exist at the celiac.com forum, a quick glance at a few of the threads there quickly revealed that the moderators and popular participants don't really believe in super sensitivity.

It was a bit of a shock to see how often super sensitives are confronted or given the same generic advice that may be true for the average person, but not true for them.

For the most part, what is shared at celiac websites, blogs, and forums is what works for the average celiac.

While that advice is useful to a newbie, and those who can tolerate up to 20 ppm of gluten in their food, standard information that all celiacs need to know and use won't be enough if you are extra sensitive to gluten residues.

Forums and bloggers speak to those who do fine at higher levels of cross-contamination, such as 20 ppm, but it is very rare to see someone go against the majority or a celiac expert at a blog or forum.

It honestly is.

Some are willing to talk to you in private. Just not openly.

What You Can Expect at Super Sensitive Celiac

I've been blogging and writing online for over a decade now.
Over the years, my efforts have become rather scattered.

With this blog, I intend on gathering up all of those pieces and merge them together into a single venture, so that the posts and recipes published here will be more useful for you.

Instead of trying to decide which recipe or article to publish at a particular blog, I'll simply divide the blog into categories to make it easy to find what you need.

Everything in the life of a super-sensitive celiac is perceived and evaluated from the perspective of being super sensitive to gluten, so consolidating my efforts here will enable me to weave together all of the topics that affect the life of a celiac into a single blog.

This new one-blog structure will also enable me to include a multitude of topics that affect the total life of a super-sensitive celiac, such as:

• celiac disease and gluten-free information and facts
• news and hot topics that affect those with gluten issues
• practical advice on living gluten free every day
• how to handle the emotional upheavals of living with celiac disease
• creating affordable gluten-free diet recipes
• tried-and-true gluten-free weight-loss recipes
• baking tips or gluten-free food lists and charts
• specific help with weight loss or weight-gain prevention
• weight-loss diet reviews and recommendations
• nutritional insights on gluten-free foods and meal planning
• what to beware of when it comes to cross-contamination
• how to create a safe kitchen environment
• the many areas and potential areas where gluten can hide
• ideas on how to handle social, work, and holiday situations
• associated conditions and celiac symptoms
• dermatitis herpetiformis information
• autoimmune disease information and tips

If you just want to hang out with other super-sensitive celiacs who understand your struggles and what you're going through, we offer that, too.

Our aim is to provide you with the assistance and information you need on every possible topic that affects your life.

Therefore, questions or topic ideas are certainly welcome, as are personal experiences, new discoveries, and areas of cross contamination I might not have thought of before.

If you have a question, thought, topic, or just want to share, leave a comment below, or you can email me if you'd rather talk in private.

I love to hear from readers!

Unlike other blogs and forums where posts and comments are limited to generic advice and safe celiac topics, our focus here is on the real concerns and struggles that super-sensitive celiacs face each and every day.

You are not alone!