Celiac disease testing is essential for monitoring and diagnosis celiac. Despite this, the different celiac tests and why their purpose are often misunderstood. So, let’s talk about what celiac disease testing is and what it involves so we can better understand it.
Celiac disease is an autoimmune disease where the small intestine is damaged when gluten is consumed. Basically the body attacks the small intestine when gluten is eaten. This damage can lead to a wide-variety of symptoms and health problems.
If you have celiac you must live gluten-free for the rest of their life. This is to prevent symptoms and any further damage to you small intestine
A gastroenterologist typically assesses and diagnoses if someone has celiac.
Celiac disease testing is essential in knowing if you have celiac. In fact, the only way to know if you have celiac is to be tested for it.
If you’re trying to get tested for celiac, know that in order to get accurate results, you must be eating gluten.
This is what many people call the “gluten challenge”.
The gluten challenge is essentially where you eat gluten (usually 2-10g or 1-2 slices of bread) everyday over the course of a few weeks.
In order to measure the celiac autoimmune response, you must be eating gluten. This is why the gluten challenge is required.
Beyond Celiac has a really good post on this, check it out here.
If you’ve stopped eating gluten and want to be tested, the idea of a gluten challenge might scare you and understandably so.
Many people face the tough choice of doing the gluten challenge or not. If you have concerns, definitely talk about them with your doctor.
Celiac disease testing can involve genetic tests. In order to have celiac, you must carry 1 or both of the celiac genes (the HLA DQ2 and DQ8 genes).
You may be tested for the celiac gene by some doctors before other testing. This is to assess your risk for celiac.You can not have celiac if you don’t have the gene.
However, know that just because you have the gene does not mean you have celiac. Having the celiac genes just means you have the potential to develop it.
This is because the celiac genes must be “turned on” in order to have celiac and the only way to know if they have “turned on” is to continue with testing.
Lastly, if you have the gene(s), that does not mean you have to avoid gluten. You only need to avoid gluten if the gene is activated and you’re diagnosed with celiac.
Celiac disease testing involves blood tests. These blood tests are a used to screen individuals for celiac. These celiac blood tests are also referred to as celiac panels.
This testing involves running a series of blood tests to check for an autoimmune response. Below are some of the specific tests they run:
The Celiac Foundation also has an excellent post on getting a blood test for celiac, read more here.
imware allows you to screen from the comfort of your own home with their celiac screening home test kits. (This is an affiliate link). These screening kits allow you to get a blood test for celiac if you’re having trouble getting a doctor to screen you.
First, in order for any celiac test to be accurate, you must be eating gluten.
Second, per the Celiac Disease Foundation, the tTG-IgA Celiac Blood Test is accurate 98% of the time in people with celiac. The same test is said to be accurate 95% in people without celiac.
Meaning 98% of the time the tTg-IgA celiac blood test results are positive in those with celiac. Additionally, 95% of the time this same test is negative in those without celiac.
The reliability of other celiac blood tests is lower. The tTG-IgA test is said to be the most sensitive.
A biopsy of the small intestine remains the gold standard for a celiac disease diagnosis. If you have positive blood test results, they are usually confirmed through an intestinal biopsy to check for damage.
The intestinal biopsy will provide you with a measurement of damage in your small intestine. This usually provided in the form of a marsh score.
It’s important to note that for accurate blood or endoscopic results, you must be consuming gluten, otherwise there is a risk that there will be no damage or autoimmune response to measure.
The last way to get tested for celiac disease is a biopsy of the celiac rash. This is a form of celiac that is characterized by a painful and itchy rash. Celiac dermatitis herpetiformis can be confirmed through biopsy of the rash.
Celiac disease testing does not only involve diagnostic tests but also tests for monitoring your health. Celiac follow-up testing include celiac blood tests to compare and contrast your diagnostic lab values to your current ones. If possible, your doctor may try to do follow-up endoscopies to assess for damage too.
Some labs say anything below a positive test result is okay. In my experience, I like to see people have negative test results in their gluten-free life.
For example, tTG-IgA wise, the Mayo Clinics reference ranges suggest a negative result if it’s <4. This is something to monitor if your tTG-IgA was elevated at diagnosis.
Additionally, running nutrient panels is helpful. Especially if you were diagnosed with nutrient deficiencies or anemia with celiac disease.
Usually, your healthcare provider will run these a celiac panel and nutrient panel every 3-6 months after diagnosis to assess progress. Once your follow-up tests come back normal, they typically run the tests yearly.
Endoscopy-wise, it’s recommended an endoscope be done 1 year after diagnosis and then every 3-5 years after to verify healing.
As always, discuss any questions you have about your status, progress, or monitoring, with your health care provider.
You can order celiac monitoring at-home test kits (this is an affiliate link) from imaware. If you’re having trouble getting celiac panels ordered by your doctor, these are a great option.
It’s important to note that these monitoring tests do not always represent any accidental exposures you might have had.
Additionally, if you’re trying to determine if you’ve been glutened the past few days, these at-home gluten detection tests (this is an affiliate link) can help take out any question on if you were exposed to gluten or not. This at-home test can offer results in as soon as 10-15 minutes!
First, always discuss your concerns and questions with your doctor.
However, if you were diagnosed with celiac, you will have celiac for the rest of your life (unless a cure is developed). This is a life long disease. Unlike food allergies, you can’t grow out of your new gluten-free needs.
Ultimately, a negative celiac panel does not mean you’re “cured” of celiac. It just means you’re doing a good job at avoiding gluten and thus, there’s no autoimmune response for the test to measure.
If you’re not feeling better after a celiac diagnosis you should talk to your doctor or dietitian. A dietitian can help rule out an food sensitivities and any potential gluten exposure sources.
This also applies to if your labs are not normalizing. If you aren’t seeing negative test results in your follow-up care, you may consider getting help.
Finally, a doctor can help rule out any other conditions that might be contributing to lingering symptoms.