Follow up testing for celiac disease can help answer some important questions and help you decide if you need to make changes to your lifestyle and diet.
Follow up testing can tell you:
- If you are still being exposed to gluten.
- If your small intestine is healing.
- If you’re successfully following a gluten free diet.
- If you’re generally getting better.
I will go over the current general recommendations for testing and tell you what my doctors instructed me to do. Your testing will depend on your unique situation and the advice of your doctor.
3-6 Months: Between 3-6 months after getting diagnosed and starting a gluten free diet, it’s recommended to see your doctor and talk about whether there have been any change in your symptoms.
At this time your doctor should also recheck your celiac serology tests. The name of the most common blood test done is Tissue Transglutaminase Antibodies (tTG-IgA). My doctor also ordered a couple other celiac blood tests.
12 months: Around a year after diagnosis it’s recommended to go in for another appointment with your doctor and discuss your symptoms and overall health. This is a good time to bring up improvements or lack of improvement because a year gluten free is often enough time to see some results. Your doctor should recheck your celiac serology tests at this time to determine if you are still being exposed to gluten without realizing it.
There is conflicting information out there about whether you should get follow up endoscopies to biopsy the villi and check if the intestine is healing. Some say biopsies are no longer needed after diagnosis. Whether you need a repeat biopsy will most likely be determined based on your symptoms and your doctor.
If you continue to have symptoms, it’s recommended to have a follow up endoscopy somewhere between 3-5 years in order to rule out refractory celiac disease.
While there is some variation in the timing of follow up testing, one thing that is consistent is the need for follow up care if you’re diagnosed with celiac disease (or any other gluten related disorder).
Maintaining a gluten free diet can be difficult and it’s very helpful to know along the way if your being successful or if you need to make some changes. Our symptoms don’t always let us know if we are doing a good job but sometimes bloodtests can help with this.