Undiagnosed Celiac Disease

A new study published in the July 2009 edition of Gastroenterology found that young people today are 4.5 times more likely to have celiac disease than young people 50 years ago. Another alarming fact is that people with undiagnosed celiac disease have a 4 fold increase of death than in patients without celiac disease.

One of the study authors comments, "Celiac disease has become much more common in the last 50 years, and we don't know why."

He goes on to state, "This study suggests that we may need to consider looking for celiac disease in the general population, more like we do in testing for cholesterol or blood pressure."

Immune responses to gluten are not uncommon. Get checked.

Is Celiac Disease Common?

One of the comments I frequently hear is that celiac disease is rare. If you go on the website of the Celiac Disease Foundation, you’ll find that 1 in 133 people are afflicted. That turns out to be about 0.7% of the population or about 2.2 million Americans.

If your doctor isn't quite as informed on this issue as she is on other issues, then she may cite this "official number"(also cited by the National Institutes of Health). But I want to tell you that this number is very, very wrong. It's a very old number based on old criteria and an old understanding of celiac disease. (OK- actually not that old. The data was published in a 2003 article in the Archives of Internal Medicine. Nonetheless... a lot has been learned in that past 6 years so here's an update on the numbers).

“Thanks to greater awareness of the disease and the availability of improved diagnostic tools… the prevalence of celiac disease in Western countries has been increasing steadily, and it is now recognized as a common disorder, even in adults. International Journal of Immunopathology and Pharmacology 2009-Jan-Mar;22(1):1-7

A 2008 study out of the University of Chicago showed 4 types of celiac disease.
1. Typical: with gastrointestinal (GI) signs and symptoms
2. Atypical (extraintestinal): with little or no GI symptoms
3. Silent: with destruction to the small intestine but absolutely no symptoms
4. Latent: where people have genes that set you up for celiac and even antibody production. But in this case, you may or may not have any symptoms but your small intestine is just fine! Molecular Diagnosis & Therapy:Volume 12(5)2008pp 289-298

The original number (1 in 133), really describes the 'typical' version of celiac described above. Over the past few years, we're starting to understand that the 'atypical' or 'silent' versions can take on many faces, some of which we wouldn't expect. Here's what it could look like.

1. "Osteoporosis... can be a sign of silent celiac disease ." Minerva Medica 2006 April; 97(2): 191-203

2. Type 1 diabetes and autoimmune thyroid disease. Advances in Pediatrics 2008; 55:349-65.

3. Infertility. "Each woman with unexplained infertility should be screened for celiac disease."
Minerva Medica 2007 Jun; 98(3):217-9

4. Irritable bowel syndrome and anemia. Gastroenterology 2005 Apr; 128 (4 suppl 1):S74-8

5. Skin problems. "Atopic dermatitis was about 3 times more frequent in patients with celiac disease..." The Journal of Allergy and Clinical Immunology 2004 Jun;113(6):1199-203.


... and these are just a handful of presentations you can find in the scientific literature. Admittedly, some of these findings are disputed in other papers but the important thing to note here is this:

40 million Americans have irritable bowel syndrome
30 million+ Americans have atopic dermatitis
28 million Americans have osteoporosis.
12 million Americans may have autoimmune thyroid conditions.
6 million American couples struggle with infertility.
2 million Americans have type 1 diabetes.

Even if only 10% (I pulled this number out of the air) of each disease group suffered from celiac disease, then the 1 in 133 number already gets blown out of the water. That alone is already 12 million people or 1 in 25.

Now- I'm not saying that the incidence of celiac disease is 1 in 25. I'm saying we need to rethink the numbers and that it is a lot more common than we think.

Your Gut and Brain are Married

If you have seen your neurologist recently, you may need to be screened for celiac disease.

I wanted to share a recent journal article from the Canadian Journal of Gastroenterology that talks about neurological disorders in adults with celiac disease.

If you have gluten intolerance, your only symptoms may be nerve pain! Or it may be dementia, ataxia or other symptoms you are likely to see your neurologist for. Let's put this in perspective folks; this is a GUT journal talking about how your GUT affects your BRAIN.

The brain and the gut are married together. Convinced of this fact, these authors recommend screening for celiac disease in patients with neurological symptoms.

Gluten Intolerance- Part 3

In part 1 and 2 of this series, I wanted to convince you of two important ideas.

First, gluten intolerance is very serious even if you don't have symptoms.

Second, a lot of people in the United States are at risk.

So now what? There really are two options.

Option 1: Get tested for gluten intolerance.
There are a few ways to get tested; saliva, blood or stool.

A) Realistically, saliva testing is the least reliable among these. I don't recommend it. Saliva testing is an excellent way to test for certain hormone levels in the body, but when looking for antibodies related to gluten, it's not quite as useful.

B) Blood tests have been the standard for many years. When antibodies are detected, the gold standard has been to follow up with an intestinal biopsy to assess for destruction of the gut. If the intestinal wall shows signs of distress, you officially have "Celiac Disease." If there is no destruction, then you may not be a "true" celiac patient, but after reading part 1 and 2 of this series, I hope you understand that a lack of intestinal distress does not mean you're out of the woods.

C) Stool tests are newer on the laboratory testing scene (for gluten intolerance) but have been around for about 7 years. This is the best way to assess for gluten intolerance. Because gluten is ingested, the initial immune response occurs in the intestines. Anitbodies can be more reliably detected in the stool.

Final word on testing.
If you have a positive blood test, stay away from gluten.
If you have a negative blood tests, then it doesn't guarantee you are safe. Follow up with a stool test.
If the stool test is negative, there is a very good chance you are safe....

... but remember, gluten sensitivity can show up later in life. You may have a gene that predisposes you to this and this gene may be expressed later in your life. You may actually want to follow up with a genetic test to see if you have a gene that can predispose you.

Most labs can routinely assess for antibodies in the blood. If you choose to go with the stool test, I recommend Enterolab.


Option 2: Go on a gluten free diet
If you are having symptoms, you may try a gluten free diet even without having the test. If you feel better, then you should stay away from gluten for the rest of your life. If you are having symptoms, there is no harm in trying this method. The only problem is if you don't see changes in your symptoms. You may come to the false conclusion that you have no reaction to gluten.

Remember that immune responses to gluten can be subtle and slowly degrade different tissues in your body. Much of the current research is showing us that even things like osteoporosis may be related to gluten. You can see that if you remove gluten from your diet for two weeks, in this case, you may not actually feel any different. But you will be calming the inflammatory response that contributes toward the decrease in your bone density.

In my mind, the lab tests are a simple and easy way to remove doubt.

Gluten Intolerance- Part 2

In the previous post, we identified gluten and some of the problems it may cause. Today, we'll talk about the next steps you should take.

Get tested for gluten intolerance.
Even if you don't have symptoms... get tested.
Even if you are abundantly healthy, exercise daily and eat a perfect diet... get tested.

Why? Gluten has a way of wreaking havoc on many systems of the body. When it affects your brain, you won't actually feel anything. Then, one day, you will wake up and feel like your thoughts just don't flow as smoothly as they should. You can chalk it up to "getting older" or realize that years of assault on your brain have finally led to a few symptoms.

Before you were diagnosed with hypertension, you probably felt fine. Before your cholesterol levels came back high, you probably felt fine. 10 years before your family members were diagnosed with Alzheimer disease, they probably felt fine. But the science tells us that damage was being done to their brains long before the diagnosis. The point is; bad things happening to your body may not always feel bad. Even so... they can be very, very bad.

I truly wish that everyone who was gluten intolerant felt terrible after ingesting gluten. That way, all those people would stop any kind of insidious assault on their body long before the damage is done. Unfortunately, you may actually feel fine while your gut and body act as a battlefield.

How many people have gluten intolerance?
Honestly, it's tough to tell. Our understanding of gluten intolerance has come a long way in the past ten years. We're still a long way from understanding exactly how it causes such a variety of symptoms. Nonetheless, here are the numbers we do know.

1 in 133 people have celiac disease; a very aggressive form of gluten intolerance that leads to significant destruction of the gut.

That may seem like a pretty small number but there's more. Approximately 30-40% of the US population carry a gene that predisposes you to developing gluten intolerance! Of course it doesn't guarantee that you will actually react poorly to gluten but keep in mind; genes may express themselves later in life or under periods of physiological stress. That does mean that 30-40% of Americans have at least one major risk factor for developing gluten intolerance.

The 1 in 133 is a statistic for outright celiac disease. But given the recent evidence that gluten may be involved in many other disorders, we're likely to have more reliable numbers for gluten intolerance in the future. Some experts state that approximately 30% of the population are actually gluten intolerant. I'm not willing to hang my hat on those numbers just yet; but it is enough to make me take a serious hard look at gluten in my patient population.

Gluten Intolerance- Part 1

If you've been into a health food store recently, you probably saw a variety of gluten free products on the shelves. Even popular brands like Chex Cereals boast of gluten free products like their popular Rice Chex.

Let's answer two big questions today. What is gluten? Why is it bad?

What is gluten?
Gluten is a protein found in wheat, rye and barley products. While oats do not typically contain gluten, conventional processing methods commonly contaminate the oats with gluten. Conventional breads, pasta, crackers, waffles, pancakes, cookies & cakes contain gluten. Wheat products are ubiquitous in today's society. Many processed foods like sauces, soups, gravies, chowders, cereals, flavorings, baking products & seasonings contain gluten.

Why is it bad?
Gluten isn't necessarily bad. Some people can consume gluten and live healthy lives. But many others have a reaction to gluten that may lead to significant health issues. For whatever reason, in some people, the immune system reacts and actually starts attacking gluten. As this battle wages on, there are casualties such as the lining of your intestines. In some situations, this war actually destroys the intestines so much that food is poorly absorbed. This malabsorption may lead to weight loss and other signs of nutrient deficiency. In some individuals, that battle will turn inward as the immune system starts to attack your own tissues. This is an autoimmune component to gluten intolerance.

If you feel like you don't suffer from gut issues, don't breathe that sigh of relief just yet. Rather than thinking of gluten intolerance as a gut issue, it is more appropriate to think of it as an immune issue that may or may not affect the gut.

Once the immune system gets riled up in the gut, it can be activated throughout the body and may result in symptoms/conditions such as:

• Osteoporosis, anemia, depression, behavioral problems, skin conditions
• Type 1 diabetes, rheumatoid arthritis, thyroid conditions
• Cognitive impairment, ataxia, peripheral neuropathy, epilepsy, attention problems
  
• Infertility, recurrent miscarriage
• ... and more
  

To be clear, this is not to say that gluten is the single cause for all these symptoms. But it is likely to play a significant role in many cases.