Celiac Resources

Frequently Asked Questions about Celiac Disease: Diagnosis, Testing, Treatment

Written and compiled by Anne Hjortshoj. Last updated April, 2009.

The following information should not be taken as medical advice. I am not a medical doctor. This is information I found helpful as a person with celiac disease, and I include it here because I think it might be useful to others. It's taken from my own experience and reading since diagnosis. This information is most relevant for people who live and receive medical care in the United States.
- Anne Hjortshoj, FoodFiltr founder     

What is celiac disease?

The National Digestive Diseases Information Clearinghouse defines celiac disease like this:

"Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in products we use every day, such as stamp and envelope adhesive, medicines, and vitamins."

It's also found in makeup, shampoo, hair gel, hand lotion, and lots of other things that use gluten as a binder.

Is it an allergy?

No, it's an autoimmune disorder that causes the body to attack its own small intestine upon exposure to gluten. People with celiac disease will not go into anaphylactic shock if they eat gluten; instead, the body damages the tiny, finger-like protrusions in the small intestine, which normally allow nutrients from food to be absorbed into the bloodstream. When the villi are damaged (or "flattened" -- they actually flatten out and decrease the amount of surface area in the intestine), a person becomes malnourished.

This happens whether the person with celiac disease eats a crumb or an entire loaf of bread. Any exposure causes damage.

What causes celiac disease?

Celiac disease is a hereditary disorder. People inherit the gene (or genes) for celiac disease from someone in their family tree. Some people have the gene and never develop the active form of the disease; most often, celiac disease seems to be activated by some sort of physical stress. This can include such things as puberty, an auto accident, the onset of a different disease that stresses the immune system, or pregnancy.

This means that if you have a first-degree relative who has celiac disease (mother, father, sister, brother, child), you should absolutely be tested yourself.

What is the cure?

There is no cure for celiac disease, but it can be 100% controlled with a strict gluten-free diet. In other words, if you have celiac disease, and you don't eat gluten, you'll feel completely normal.

What are the symptoms?

There are more than 200 possible symptoms for active celiac disease (meaning, for someone who has the disease and is currently eating gluten). Some people lose weight and have a constantly upset stomach (these are the classic symptoms that most doctors are trained to look for). Others inexplicably gain weight. Some people have mysterious bouts of inflammation and pain (rashes, migraines, joint problems). Others have unexplained anemia, or infertility. And some people may have low levels of energy, but otherwise feel fine.

So if I don't have symptoms, I don't have intestinal damage, right?

You may. There is exactly zero correlation between severity of symptoms and degree of damage. Someone with relatively few or mild symptoms can have lots of intestinal damage, and vice versa. It's impossible to know without an endoscopy.

The thing to remember is that if you have the disease, and you eat gluten, you are hurting yourself, even if you feel fine.

If I don't have symptoms, why should I care that I have intestinal damage?

People with celiac disease who do not adhere to a gluten-free diet risk developing fun stuff like osteoporosis (from malnutrition), lymphoma (possibly from constant intestinal inflammation), and dementia. It can also ruin your teeth.

Many people with "no symptoms" feel a lot better after changing their diet. Low energy is a common symptom, but it's rarely noted as such, until the person with celiac disease stops consuming gluten and no longer feels fatigued.

I think I may have celiac disease. What should I do?

If you suspect you have celiac disease, it's important to be tested by a doctor who understands (1) which tests to administer and how to interpret the results, and (2) how to direct you to appropriate follow-up care if the tests indicate that you do indeed have celiac disease.

Background: until approximately 1990, it was assumed that celiac disease was a rare disorder in the United States. It was also widely understood to be a childhood disease that disappeared after puberty. Neither assumption turned out to be correct; in fact, the occurrence of celiac disease is about the same worldwide (about 1 in 100 people have it), and is unsurprisingly more common in countries with a wheat-based diet (because the diet triggers the symptoms, which leads to testing and diagnosis). It is also lifelong.

Medical schools in the United States did not change their curriculum to reflect this knowledge until after 1990. If your doctors went to medical school before then, it's very likely that they are a little resistant to the idea of testing their patients for a "rare" disorder, especially since their training may have told them that this disease is not just rare but supposedly confined to people who are emaciated and have an upset stomach (not always the case, as I've pointed out above).

If suspect that you may have celiac disease, and your doctor refuses to screen you based on the above assumptions, then you owe it to yourself to find another doctor, preferably one with up-to-date knowledge and experience in this area.

(Remember that you may not have celiac disease, but something else. Celiac disease mimics other conditions and vice-versa. This is why it's important to see a good doctor.)

What are the tests? What is the follow-up?

The so-called "gold standard" test for celiac disease in the United States is in two parts: a test to measure celiac antibodies in the blood, and an endoscopy (camera down the throat to the gut) with biopsy (tissue sample) of the small intestine.

The blood test looks for antibodies, the endoscopy looks for visible damage, and the tissue sample enables the doctor to examine the surface of the small intestine under a microscope to look for damage invisible to the naked eye. This is necessary because it's possible to have a negative blood test and still have active celiac disease (a "false negative" blood test).

For the precise blood tests you'll need, please refer to this pamphlet, published by the National Digestive Diseases Information Clearinghouse:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/celiac.pdf (requires Adobe Acrobat Reader).

When you have your endoscopy, you'll probably be awake but too sedated to remember the procedure.

Make sure that the gastroenterologist performing the tests and the endoscopy/biopsy is experienced in diagnosis of celiac disease, and is up-to-date on which blood tests to order, and how celiac test results should be interpreted.

I haven't been tested, but I plan to be soon. Should I change my diet now?

If you are headed for a test soon, absolutely not. Keep eating gluten until you have blood drawn and until you have your endoscopy. If you change your diet, you will start to heal (good) but you may not get a clear diagnosis (very bad!) because your blood antibody levels will diminish and your intestine will begin to repair the damage.

I don't think I need an official diagnosis -- I can just change my diet, right? Do I really need to go through all of this?

It's very useful to have a diagnosis in your medical records, for a couple of reasons. If you ever need to be approved for testing for other autoimmune conditions (like, say, lupus, or arthritis, which can co-occur with celiac disease), a celiac disease diagnosis may make it that much easier to get tests paid for by your insurance company. Also, an official diagnosis is part of a complete medical picture for the doctors who will treat you in the future, some of whom may be resistant to your insistence that you have celiac disease even though you've never been tested. It's an important piece of your medical history, and it may affect your ongoing care.

If I have an official positive diagnosis for celiac disease, could I be denied health insurance coverage?

It depends. In my case, no. In some cases, yes. It seems that celiac disease can indeed be a declinable condition for some insurance companies. This means that when a person with celiac disease applies for coverage, they may be automatically turned down. Research possible insurers before you apply, and proceed with caution.

Are there other tests I should get?

Yes. You should have a bone scan to look for bone damage from malnourishment. Active celiac disease can cause the body to leach calcium out of the bones and teeth, because it's not getting enough calcium from food due to malabsorption. If you have osteoperenia or osteoporosis, there are good treatments available.

How long should it take me to recover after I change my diet?

Celiac disease never goes away (you'll need to be on a gluten-free diet for the rest of your life), but the intestine should heal (and antibodies should clear) within months to years. Most people feel a lot better within a few weeks after changing their diet. It's important to manage not only your diet, but everything that can get in your mouth: cosmetics, soap, etc. It's also important to watch out for cross-contamination in food preparation. One crumb can make you sick or cause damage, so make sure the restaurants you visit have a good understanding of gluten-free food handling.