Maybe you’ve been struggling with one of the 200 known symptoms of Celiac disease, or maybe you and your doctor are trying to figure out if you have IBS vs Celiac disease. To get answers, you’ll need to complete a blood test and possibly an endoscopy with a duodenal biopsy.

In the weeks leading up to your Celiac disease test, it is critically important that you continue to eat gluten. I understand the urge to immediately cut out gluten if you think it’s the cause of your pain, but without any gluten in your system, your Celiac disease test results may come back with false negatives.

It’s also important to note that if you cut out gluten without getting tested, but decide to get tested at a later date, you will have to do what is known as a “gluten challenge”. A “gluten challenge” means that you will have to reintroduce daily gluten into your diet for a prescribed number of weeks or months (typically anywhere from 2 weeks to 2 months, depending on your doctor’s guidelines).

Who is at risk for Celiac disease?

If you have symptoms of Celiac disease or gluten intolerance, take a look at your genetics and family health history. People with Celiac disease carry the gene(s) HLA DQ2, DQ7, and/or DQ8. If you’ve ever had genetic testing done, you may already have that info on hand. Otherwise, take note of what other conditions you or your immediate family members have. Celiac Disease is associated with conditions like Type 1 Diabetes and thyroid disease*.

If this sounds like you, it’s important to bring up these concerns to your doctor and advocate for yourself to pursue a Celiac disease test.

The Blood Test

Typically, the first step in a Celiac disease test is a blood panel. A blood sample will be taken to assess for your levels of tTg-IgA, which stands for Tissue Transglutaminase-IgA.

What is a Tissue Transglutaminase-IgA test?

This blood test looks for antibodies produced by your immune system. These specific antibodies are proteins produced by your immune system which signal your immune system to attack the lining of the small intestine. Damage to the lining of the small intestine is the hallmark sign of Celiac disease. The tTg-IgA antibodies are produced by the immune system whenever a person with Celiac disease eats gluten.

In this day and age, you will probably be able to view your blood test results online before hearing back from your doctor or booking a follow up appointment. If you have tTg-IgA circulating in your blood above a certain level, then you very likely have Celiac disease. Your doctor may want to send you for additional testing to be certain.

The Endoscopy

If you have a positive tTg-IgA blood test then you may be sent for an endoscopy. Your doctor may still refer you for an endoscopy even if your blood test was negative, depending on your other symptoms and family health history.

An endoscopy is a painless, outpatient procedure. A healthcare provider will sedate you and put a small camera into your mouth. The camera will travel down your throat, through your stomach, and into the first section of your small intestine: the duodenum. Here, the healthcare provider will examine the state of your small intestine and assess for damage. A small biopsy will be taken for lab testing and analysis. A gastroenterologist will interpret the results. If the gastroenterologist can detect damage to the microvilli lining your small intestine, then you will be diagnosed with Celiac disease.

Is the endoscopy necessary?

If you’re like me and you had high levels of tTg-IgA in your initial Celiac disease test, then you may be wondering if it’s even worth booking a day off work to do the follow up endoscopy. Discuss this with your doctor. I cannot advise you on what to do, but I can present you with the honest pros and cons that I wrestled with myself.

Reasons for:

• You will have a higher degree of certainty, which may help you stick to a strict gluten-free diet.
• Many drug trials are in the works for the treatment of Celiac disease (yay!), and if you’d like to participate in these, endoscopy-confirmed diagnosis is usually mandatory.
• Depending on future treatments and how health insurance works where you live, there’s a chance that an endoscopy-confirmed diagnosis could one day be required when accessing a new treatment.

Reasons against:

• You may already feel that the diagnosis is certain because of the blood test and your symptoms or family health history.
• You may be desperate for relief and cannot continue to eat gluten while waiting for your endoscopy appointment.
• You don’t plan to participate in any drug trials and aren’t holding your breath in hopes that a new medication hits the market in the near future.

Next Steps

Finally, you have answers! You will now begin a new journey: adjusting to a gluten-free life. At first, it’s not easy. During my diagnosis I experienced grief, sadness, anxiety, stress, and frustration. I grieved my old life: dining out, eating at potlucks, not obsessing over ingredient labels. I was stressed and anxious all the time being hyper-vigilant about hidden sources of gluten or cross contact. And on top of all that, I didn’t even feel better at first!

I’m not saying this to scare you. Please know that it does get better. I adjusted, and now the gluten-free diet feels like second nature. Of course I still sometimes grieve parts of my life before my diagnosis, but I also feel so grateful to the doctor who figured out what was wrong with me. After four months of being gluten-free I started to feel noticeably better in all aspects of my life and I watched my symptoms disappear. After a year, I felt the healthiest I had felt in years. We’re not alone and there’s a lot to enjoy in life as a Celiac 🙂

Sources:

* https://celiac.org/about-celiac-disease/related-conditions/autoimmune-disorders/