celiac disease testing
what the different celiac tests are and why they are used
Whether it be for diagnosis or for monitoring, there is a lot of confusion around celiac testing and what it all means so let’s talk about it.
What is Celiac?
Celiac disease is an autoimmune disease where the small intestine is damaged when gluten is consumed. This requires those diagnosed with celiac to have to live gluten-free for the rest of their life.
Testing for a Celiac Diagnosis
If you’re trying to get tested for celiac, the first thing to know is that in order to get accurate results from the blood test or endoscopy, you must be eating gluten.
This is what many people call the “gluten challenge”.
It’s where you eat gluten (usually 2-10g or 1-2 slices of bread) everyday over the course of a few weeks.
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 Genetic Test
In order to have celiac, you must carry 1 or both of the celiac genes (the HLA DQ2 and DQ8 genes).
Some doctors may test people for the genes before continuing with testing to see if you are at risk.
However it’s important to note that just because you have the gene does not mean you have celiac. It just means you have the potential to develop it.
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.
It’s also important to note that if you do have the genes, 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 Blood Tests
When being screened for celiac, often health care providers will start with running a celiac panel, or a series of blood tests to check for an autoimmune response.
- Total Serum IgA – to check for IgA deficiency to make sure the tests they run will be accurate
- DGP IgA and IgG – tests used to screen for celiac if there is an IgA deficiency.
- tTG-IgA – the most commonly used blood test for celiac diagnosis. It is said to be the most sensitive test.
The Celiac Foundation also has an excellent post on different blood tests done 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). If you’re having trouble getting your doctor to screen you or having trouble seeing a doctor, this maybe something to consider.
Endoscopy & Intestinal Biopsy
A biopsy of the small intestine remains the gold standard for celiac disease diagnosis confirmation. If you have positive blood test results, they are usually confirmed through an intestinal biopsy to check for damage.
This intestinal biopsy will provide you with a measurement of damage to your small intestine, usually 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.
Celiac Disease Monitoring
Typically celiac disease monitoring involves a celiac panel to compare and contrast your diagnosis lab values to your current ones. Additionally, if you were diagnosed with nutrient deficiencies along side your celiac, those labs might be ran as well. It just depends on your doctor.
Health-care providers typically run these tests every 3-6 months after diagnosis to assess progress and then yearly after that.
As always, if you have questions about your status, progress, or monitoring, discuss them with your health care provider.
imaware has celiac monitoring at-home test kits (this is an affiliate link) you can order if you’re having trouble getting celiac panels ordered and you want to know how your body is responding.
It’s important to note that these monitoring tests do not always represent any accidental exposures you might have had.
If you’re trying to determine if you’ve been exposure to gluten in 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!
My recent labs show I'm negative for celiac does this mean I'm cured?
First, always discuss your concerns and questions with your health care provider.
That being said, if you were diagnosed with celiac, you will have celiac for the rest of your life (unless a cure comes out).
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.
What if I'm not Feeling Better?
This would be a time to speak with your doctor and dietitian to see if there is anything else going on. A dietitian can help rule out an food sensitivities and any potential gluten exposure sources.
A doctor can help rule out any other conditions that might be contributing to lingering symptoms.