Seeking a diagnosis

I think I might have Celiac disease… what’s next?

Talk to your doctor

Talk to your doctor

The process of diagnosis for celiac disease is through a combination of examining your symptoms, blood tests, and a biopsy of the small intestine. A medical diagnosis is like a court case. You want to gather all of the facts and put the puzzle together. No single thing makes the diagnosis by itself.

  • When a person with celiac disease eats food that contains gluten, the gluten is absorbed and causes an abnormal response in the immune system. The immune system ‘attacks’ the lining of the small intestine and this leads to damage over time so that the small intestine has difficulty absorbing nutrients. This can cause a variety of symptoms that can vary significantly in people who have celiac disease. Some patients have severe symptoms and some have no symptoms at all.

  • This is where it can be challenging because the symptoms overlap with other diseases. So, it’s important you see a medical professional to help sort out your symptoms and determine if they are due to celiac disease or something else. For example, celiac symptoms are very similar to irritable bowel syndrome or lactose intolerance. So, don’t try to figure this out on your own, talk to your doctor and you can work as a team to find the answer. Gut symptoms that are suggestive of celiac disease include:

    • long-standing or chronic diarrhea

    • bloating or abdominal distension

    • abdominal pain

    • weight loss

    • malabsorption (chronic diarrhea with weight loss not absorbing nutrients)

    • constipation

    People with celiac disease can also have symptoms outside of the gut. These symptoms include:

    • low iron anemia (iron deficiency anemia)

    • vitamin deficiencies (B12, folate)

    • elevated liver tests

    • itchy skin rashes (dermatitis herpetiformis)

    • recurrent migraine headaches

    • infertility

    • loss of tooth enamel

    • thinning of the bones (osteoporosis)

    • nerve pain (peripheral neuropathy)

    • unsteady gait (ataxia)

    If you have any of the above symptoms, then ask your doctor to test you for celiac disease.

  • Celiac disease is diagnosed usually by a gastroenterology physician that specializes in gastrointestinal illness. First, a careful history is obtained to determine if the symptoms may be from celiac disease. A history alone is not adequate to sort out if someone has celiac disease because celiac symptoms overlap with other GI disorders such as irritable bowel syndrome. Further tests are needed to really determine if someone has celiac disease.

    The second step in the diagnosis is to obtain celiac blood tests or celiac serologies. Currently, the specific single lab test that is recommended is anti-tissue transglutaminase IgA (TTG-IgA) and a total IgA level. There are other labs that could be ordered as well.

    If the antibodies are elevated on the blood work, then the next step is an upper endoscopy with biopsies of the first part of the small intestine or duodenum. The biopsies are examined by a pathologist using a microscope to look for changes in celiac disease.

    If the blood tests show positive antibodies and the biopsies of the duodenum show changes of celiac disease, then the person has celiac disease. At this point, depending on the available medical resources near you, your doctor may refer you to a dietician, test you for nutritional deficiencies and counsel you on a gluten free lifestyle.

    Many physicians are familiar with advising patients on the need for following a gluten free diet, but they do not know the specifics of how to implement the diet.

    This website is intended to help you start that journey because I understand what works from my experience with celiac disease.

  • Celiac disease is treated by completely removing gluten from your diet. In other words, celiac disease is treated by following a gluten free diet. In the United States, gluten is most commonly present in foods that are prepared with wheat flour. Gluten is also present as a hidden ingredient in many prepackaged foods, medications, make-up, and supplements. Maintaining a gluten free diet can be very challenging because the use of wheat flour is so common. In people with celiac disease, strict gluten avoidance is recommended because even small amounts of gluten can aggravate the disease and cause symptoms. Unlike other diets, people with celiac disease cannot occasionally ‘cheat’ on their diet and eat gluten-containing foods without experiencing significant symptoms that can last for days.

  • Most patients improve symptomatically within weeks on a strict gluten free diet, but complete improvement on a cellular level may take months to years. You can expect your labs to become normal in 6-12 months.

  • As of 2023, there are several in the testing phase but none are currently approved by the FDA. The drugs being tested aim to break gluten down and block its absorption as well as tighten the gaps in the small bowel to prevent a “leaky gut”.

  • Non-celiac gluten sensitivity is an intolerance disease that mimics symptoms of celiac disease but does not trigger an autoimmune reaction that can damage the small bowel. Patients with non-celiac gluten intolerance experience celiac-like symptoms when they eat gluten but they do not fulfill the criteria for celiac disease because their labs and biopsies are normal, and they have no autoimmune reaction. Common symptoms include:

    • Bloating

    • Diarrhea

    • Abdominal pain

    • ‘Foggy’ thinking that lasts for a couple of days

    • Some describe nausea

    • Fatigue

Partnering with your physician is crucial

You cannot confidently diagnose celiac disease by just going on a gluten free diet alone. It can take months on a strict gluten free diet to notice symptomatic improvement. Symptoms alone are not able to diagnose celiac disease because the signs and symptoms of celiac disease are very similar to several other conditions.