Always consult with a physician for a celiac disease diagnosis. Going gluten free prior to getting a celiac diagnosis may make it harder later to find out if you have celiac disease.
Celiac Disease Diagnosis
Getting a celiac disease diagnosis can be a frustrating process if you don’t have any guidance. This page is here to help you see a clearer path to diagnosis and hopefully relieve some of the stress.
• On average it takes between 6-10 years to be diagnosed with celiac disease.
My story: I complained of symptoms for 7 years before a celiac diagnosis was accidentally found during my endoscopy.
Quick Overview: The most common path to a celiac disease diagnosis starts with your doctor ordering a celiac panel. After taking the celiac disease blood test and getting positive results, your doctor will order an endoscopy. The endoscopy for celiac will provide biopsy samples and confirm your celiac diagnosis. At this point you can begin a gluten free diet.
Endoscopy is the gold standard for celiac diagnosis
Path To Celiac Diagnosis
- Positive Celiac Panel
- Endoscopy for Celiac Confirmation
- Positive Celiac Biopsy Results from Endoscopy
- Official Diagnosis of Celiac Disease
Is there any way to avoid an endoscopy and still get diagnosed with celiac disease? Actually, yes there is! Having a skin biopsy that is positive for Dermatitis Herpetiformis confirms a celiac disease diagnosis.
Why Should I Get Tested?
Identifying and treating celiac disease is very important!
Left untreated celiac disease can become life threatening and lead to autoimmune diseases, malabsorption, thyroid problems, osteoporosis, organ disorders, infertility and cancers.
→ Even people who are asymptomatic and don’t feel any reaction to gluten are at risk for these complications.
This is why it’s so important to encourage first degree relatives to get tested if you receive a celiac disease diagnosis.
Celiac Disease Blood Testing
You will hear the terms sensitivity and specificity when talking about celiac diagnosis blood testing. So what do they mean?
Sensitivity – a celiac disease blood test that’s 100% sensitive means that everybody with celiac will have a positive result.
Specificity – If a celiac disease blood test is 100% specific is means nothing else, no other disease or condition, can cause a positive test result.
What Kind of Celiac Disease Blood Tests are Available
Tests for human leukocyte antigens (HLA-DQ2 and HLA-DQ8).
→ Celiac genetic testing is very effective at ruling out celiac disease.
However, many people can carry the genes for celiac and never have active celiac disease. Therefore, a positive genetic test doesn’t mean you have celiac disease.
This is the testing done in a celiac panel. Celiac serology tests look for antibodies in the blood.
These antibodies indicate an immune response to gluten proteins. Some example of celiac serology tests are the TTG-IgA and the IgG.
The Celiac Panel
A celiac panel will include at least two of the blood tests below because there isn’t a single celiac disease blood test that can identify everybody who has celiac.
All antibody tests in the celiac panel must be taken while the person is still consuming gluten or you can get false negative test results.
To see my initial celiac panel results while still eating gluten along with my blood test results after going gluten free, check out the test results page.
Tissue Transglutaminase IgA
(AKA: tTG-Iga, Transglutaminase IgA and Tissue Transglutaminase ab IgA)
The tTG-IgA is the primary screening test in a celiac panel because it is highly sensitive and highly specific.
Transglutaminase iga antibodies are positive in over 90% of celiacs who are consuming gluten in their diets, which makes it the best celiac disease blood test.
→ Tissue transglutaminase IgA is the preferred celiac disease blood test for anyone over 2 years old.
About 3% of celiacs have selective IgA deficiency and don’t make IgA antibodies.
Total Serum IgA
(AKA: IgA Test and Immunoglobin A)
This test detects IgA deficiency so it’s frequently ordered along with the tTG-IgA to detect the 3% of celiacs who don’t make antibodies.
If your total serum IgA is low than you may need a celiac disease blood test that detects IgG autoantibodies.
Here are my normal Immunoglobin A lab result:
(AKA: EMA IgA and Anti-Endomysial Antibody)
The endomysial antibody test has almost 100% specificity, and high sensitivity.
It tests antibodies developed in response to intestinal lining damage.
If the EMA is positive, it’s almost always celiac, but you can have celiac and test EMA negative.
The endomysial antibody is not used as often because testing and interpretation is more expensive and complicated than other celiac disease blood tests.
Can be used for celiac testing instead of the tTG IgA in people with IgA deficiency.
Other diseases like diabetes and Chrohn’s can cause the tTG IgG to be positive. A negative test doesn’t rule out celiac disease This test is usually combined with DGP.
Deaminated Gliadin Peptide
(AKA: DGP, anti-DGP, DGP IgA and DGP IgG)
DGP IgG and tTG IgG combined are the recommended celiac disease blood tests for people found to have IgA deficiency.
DGP can reveal celiac disease if it’s positive when the tTG IgA test is negative.
→ For children under 2 years old, the celiac disease blood test used is often the tTG IgG combined with the DPG.
Children under two years old often have no tissue transglutaminase (tTG) antibodies.
With all these blood tests why is an endoscopy for celiac needed?
- No celiac disease blood test has 100% sensitivity and 100% specificity.
- You can have negative celiac disease blood test results even though you are positive for celiac.
- If you have recently stopped consuming gluten you can be negative for antibodies in your blood eventhough there is damage to the villi.
Even if your celiac panel tests positive for the disease, an endoscopy for celiac confirmation is still required for an official medical diagnosis.
Currently, a celiac disease endoscopy with biopsy samples are the gold standard for diagnosis.
What Do Celiac Disease Blood Tests Do
» They help lead to a celiac diagnosis
» Monitor celiac disease after diagnosis
» Check for accidental gluten consumption
» Monitor the effectiveness of your gluten free diet
» Rule out celiac disease to prevent a diagnostic endoscopy
Should I Get a Celiac Genetic Test
The genetic test for celiac disease identifies whether a person carries one or both of the HLA DQ2 and/ or HLA DQ8 genes.
About 30% of people have celiac genes, but this doesn’t mean the disease will ever become active.
This can be a valuable test for first degree relatives of a celiac, or for anyone wondering if they have celiac disease, because a negative genetic test rules out celiac disease.
Having the celiac HLA DQ2 and/ or HLA DQ8 genes does not mean you have celiac disease.