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people who are told by a healthcare professional that they have “gluten sensitivity” actually have celiac disease, but their testing was done improperly or was insufficient to yield conclusive results.

      Say, for instance, that someone is IgA deficient (IgA is a special type of protein that the body produces to fight infections), and many people are. Most of the time it doesn’t cause a problem. But it makes testing for celiac disease difficult, because most of the celiac tests are based on starting with a normal level of IgA. If a person doesn’t have enough IgA in his body, that would make some of the celiac tests appear to be normal when actually the person’s levels should have been elevated (indicating celiac disease) if he weren’t IgA deficient. In other words, the person has celiac disease, but because testing was incomplete (the doctors didn’t test to determine if he was IgA deficient), the results were interpreted incorrectly.

      Another reason you may have celiac disease but be told you have gluten sensitivity is if the type of testing you undergo is specific to gluten sensitivity, not celiac disease. For instance, a stool test and a few types of saliva tests check for gluten sensitivity, but if you have celiac disease, they’ll be positive. So you would, in fact, have celiac disease – but the only test you’re taking in this case is for gluten sensitivity, so that’s what you’ll be “diagnosed” with.

      

If you’re diagnosed as having gluten sensitivity, you may want to ask if any specific tests were done to test for celiac disease. Some antibody tests are more specific for celiac disease as well as genetic tests. If those tests weren’t performed, you may want to get them done so you have a more definitive diagnosis. Be sure that you don’t avoid gluten before you test. Doing so can give you a false result.

You don’t have celiac disease – yet

      Sometimes in the very earliest stages of celiac disease, testing for celiac disease will be negative, but the tests for gluten sensitivity may be positive. In this case, the person has celiac disease, but it’s too early to show on tests. If that person continues to eat gluten, the testing will eventually be positive (and damage will be done!).

      

As far as celiac testing goes, “once tested” doesn’t mean “forever tested.” In other words, if you’re negative today, it doesn’t mean you’re negative forever. There’s no timeline to follow in terms of how often you should have a specific test for celiac disease, but it’s important to be aware that it can develop at any time.

You have gluten sensitivity, not celiac disease

      Some people do, in fact, have gluten sensitivity that is not celiac disease. Symptoms are generally the same as those for celiac disease (see the very next section), and, as with the disease, health improves on a gluten-free diet.

      Sorting Out the Symptoms of Gluten Intolerance

      Ask most people what the most common symptom of celiac disease or gluten sensitivity is and, if they know anything about either one (and don’t look at you and say, “Huh?”), they’ll most likely erupt in a loud, unabashed, confident chorus of “diarrhea, diarrhea, diarrhea!”

      Yet most people with celiac disease or gluten sensitivity don’t have diarrhea. In fact, they don’t have any gastrointestinal symptoms at all! And if they do have gastrointestinal symptoms, they’re often constipated, or they suffer reflux or gas and bloating.

      Gluten sensitivity and celiac disease have hundreds of symptoms. The following sections list some of the more common ones, starting with the symptoms that are gastrointestinal in nature.

Pinpointing gastrointestinal symptoms

      The gastrointestinal symptoms of gluten sensitivity and celiac disease are vast. Although most people think diarrhea is the most common symptom, gastrointestinal symptoms can include constipation, gas, bloating, reflux, and even vomiting.

      These are some of the “classic” – though not the most common – symptoms of celiac disease:

      ✔ Abdominal pain and distension

      ✔ Acid reflux

      ✔ Bloating

      ✔ Constipation

      ✔ Diarrhea

      ✔ Gas and flatulence

      ✔ Greasy, foul-smelling, floating stools

      ✔ Nausea

      ✔ Vomiting

      ✔ Weight loss or weight gain

Checking out non-gastrointestinal symptoms

      Celiac disease and gluten sensitivity are gastrointestinal conditions because the damage is done to the small intestine. But people more commonly have what are called extraintestinal (outside the intestine) symptoms. These make up an extensive list of more than 250 symptoms, including the following:

      ✔ Fatigue and weakness (due to iron-deficiency anemia)

      ✔ Vitamin and/or mineral deficiencies

      ✔ Headaches (including migraines)

      ✔ Joint or bone pain

      ✔ Depression, irritability, listlessness, and mood disorders

      ✔ “Fuzzy brain” or an inability to concentrate

      ✔ Infertility

      ✔ Abnormal menstrual cycles

      ✔ Dental enamel deficiencies and irregularities

      ✔ Seizures

      ✔ Ataxia (bad balance)

      ✔ Nerve damage (peripheral neuropathy)

      ✔ Respiratory problems

      ✔ Canker sores (aphthous ulcers)

      ✔ Lactose intolerance

      ✔ Eczema/psoriasis

      ✔ Rosacea (a skin disorder)

      ✔ Acne

      ✔ Hashimoto’s disease, Sjögren’s syndrome, lupus erythematosus, and other autoimmune disorders

      ✔ Early onset osteoporosis

      ✔ Hair loss (alopecia)

      ✔ Bruising easily

      ✔ Low blood sugar (hypoglycemia)

      ✔ Muscle cramping

      ✔ Nosebleeds

      ✔ Swelling and inflammation

      ✔ Night blindness

Watching for symptoms in kids

      Kids who have celiac disease tend to have the “classic” gastrointestinal symptoms of diarrhea or constipation. They may also have some of the following symptoms that aren’t gastrointestinal in nature:

      ✔ Inability to concentrate

      ✔ Irritability

      ✔ ADD/ADHD or autistic-type behaviors

      ✔ Failure to thrive (in infants and toddlers)

      ✔ Short stature or delayed growth

      ✔ Delayed onset of puberty

      ✔ Weak bones or bone pain

      ✔ Abdominal pain and distension

      ✔ Nosebleeds

      Considering Your Options for Testing

      With such an overwhelming assortment of symptoms, it’s no wonder people are often misdiagnosed before finding out that they have celiac disease or gluten sensitivity. It’s also no wonder so many people go undiagnosed.

      A Reader’s Digest article titled “10 Diseases Doctors Miss” cited celiac disease as one of the top-ten misdiagnosed diseases. In all fairness to the medical community, it can be tough to diagnose celiac disease when you think of the myriad symptoms. Headaches, fatigue, infertility, depression – if you go to your doctor for any of those things, it’s unlikely that he or she is going to say, “Hmm, you’re