Recognizing Celiac Disease

bread skull and crossbones
June 29, 2016
Leigh Erin Connealy, M.D.

If you have sores in your mouth, they might not be canker sores.

If you have joint pain, it might not be arthritis.

And if you suffer from a skin rash, it might not be an allergic reaction from touching the wrong thing.

These three symptoms—and plenty of others—are all signs of celiac disease. And if you have celiac disease, there’s a very good chance you don’t know it.

What is Celiac Disease?

Celiac disease is often thought of as an allergy to gluten—a protein found in wheat, rye, malt, and barley.

But that’s not quite right.

Plenty of people have food allergies. And, as we’re finding out, that can include allergies to gluten. In those people, gluten can cause all sorts of adverse effects—your body has near-limitless ways to express an allergic reaction.

But celiac disease is something far different—and far worse.

It’s an auto-immune disorder that specifically responds to gluten. When a celiac sufferer eats gluten, the body responds with an immune response. It floods the intestine with white blood cells that attack the gluten.

But they don’t stop there.

The white blood cells then turn around and start attacking the villi—the tiny, finger-like projections that line the small intestine. The villi are what absorb nutrients from food.

So when the white blood cells attack the villi, they destroy your ability to absorb nutrients from your food, and you wind up malnourished—no matter how much you eat.

The classic celiac symptom is abdominal pain, bloating, and diarrhea.

But celiac doesn’t always present with those symptoms.

Recently, I had a 19-year old patient come in with complaints of joint pain. When I tested her, it turned out she had celiac disease.

Sometimes it presents as a skin rash, or muscle pain, or anemia.

Sometimes it causes seizures, or tingling in the legs as nerves are damaged, or sores in your mouth.

In fact, sometimes there are no noticeable symptoms at all.

How to find celiac

Celiac disease is very serious and is all-too often overlooked. If left untreated, your malnourishment can cause problems for just about every system in your body—from your gall bladder to your nervous system.

But because celiac presents with such a dizzying array of symptoms—including none—it can be very difficult to diagnose.

How difficult? About 83% of celiac sufferers either go undiagnosed or their symptoms get misdiagnosed.

Even though most of us have heard of celiac disease, plenty of doctors don’t look for it. And because so many of the symptoms are subjective, some doctors give them short shrift, or suggest that, perhaps, it’s all in your head.

In all, it usually takes from six to ten years for the average celiac sufferer to get an accurate diagnosis. That’s a long time to go malnourished.

It doesn’t help that celiac can develop at any time in your life. So what was dismissed five years ago might be an emergent problem today.

The solution? Luckily, it’s very easy to find celiac, if you get a simple blood test.

I use the test from Meridian Valley Laboratories. It’s extremely accurate, and very rarely gives false positives or negatives.

In some cases, the only sure-fire way to identify celiac disease is with a biopsy of the small intestine (looking for damaged villi).

But not all doctors will go the trouble—or even give your worries the proper attention they deserve.

So if have phantom symptoms and one doctor doesn’t take you seriously, find another who will. Especially if you have an immediate family member with celiac. 10% of immediate family members will share the disease.

In addition to the blood test, I almost always try allergen removal as well. If there’s no obvious cause for a patient’s symptoms, I remove all likely allergens from their diet, and see if that makes a difference.

Oftentimes, it does. With my 19-year old patient, that was the first step we took—and as soon as we removed gluten from her diet, she was close to completely cured.

But always remember—you are your own best advocate. If you know something is wrong, keep pressing until you find a doctor willing to work with you.

How To Live With Celiac

Unfortunately, there’s no cure for celiac disease—celiac is a lifelong malady.

Luckily, it doesn’t have to be a painful one.

Simply removing gluten from your diet will cure you of symptoms almost immediately. And, in the absence of gluten, your villi will regenerate over time—a few weeks to several months depending on the extent of the damage.

And today, a gluten-free diet is easier than ever. We’re surrounded with gluten-free options, from brown rice pasta to specially-made cookies.

You’ll have to be vigilant—you’d be surprised how many foods have wheat added and gluten hidden in them (be especially careful with soy sauce, creamy soups, dressings and gravies).

But, after educating yourself a bit, it’s easy to avoid gluten. And still eat all the things you love.

In fact, there are plenty of things that you CAN eat—meats, fruits, vegetables, nuts, dairy, corn, rice, potatoes. They’re all 100% safe. (You do want to check prepared corn and rice to find out if it was prepared in a facility that also processes wheat.)

Celiac doesn’t have to be a lifelong struggle. It can be solved with a simple dietary adjustment.

But only if you know you have it. So if you’ve got any unexplained symptoms, get yourself tested. Or at least try removing gluten from your diet for two weeks, and see if that makes a difference.

Then find a doctor who will help you. It’s bad enough to suffer from celiac disease. But to do it without help is an unnecessary tragedy.

References

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