CELIAC TOWN

Celiac Test Results

This page is for my gluten/celiac only related test results. I will update my other health related topics in blog posts.

After about 1 year on a STRICT gluten free diet my symptoms have not improved. Doctor ordered the celiac antibody blood tests and my results were Negative on all tests for gluten exposure. This is very good news. Doctor says maybe it will take more time for my body to repair itself from all the damage caused by gluten.

Endoscopy

At 2 years I had my follow up endoscopy. Results looking very good! My gastroenterologist did a biopsy and said “There is no evidence of celiac disease.” My first endoscopy had shown severe damage to the intestinal villi, so this is a great improvement.

I still have a lot of symptoms and according to my GI doctor, this endoscopy indicates that the symptoms are not being caused by the celiac disease. She is referring me to an endocrinologist.

Just to clarify above “No evidence of celiac disease” is referring to the villi. It means they are back to normal microscopically… but I still have celiac disease. No Krispy Kreme donuts for me!

Celiac Blood Testing

Follow up testing for celiac disease can help answer some important questions and help you decide if you need to make any changes to your diet.

Follow up testing can let you know if you are still being exposed to gluten, if your small intestine is healing, if you’re successfully following a gluten free diet, and if you’re generally getting better.

Testing will depend on your unique situation and the advice of your doctor. I will go over the current general recommendations for testing and tell you what my doctors instructed me to do.

3-6 Months: Between 3-6 months after getting diagnosed, and after starting a gluten free diet, it’s recommended to see your doctor and talk about whether there has been any change in your symptoms with a gluten free diet.

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. Here is a picture with my first set of tests taken at the time of diagnosis while I was still eating gluten.

Elevated blood tests taken at time of celiac diagnosis.

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. Here is a photo with my blood tests at one year which show I was successfully avoiding gluten in my diet.

Normal celiac blood test results taken one year after diagnosis.

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, but whether you need a repeat biopsy will 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. I continued to have symptoms and my blood tests showed no exposure to gluten so my GI doctor did a follow up endoscopy at 2 years to see if I was healing. I had a scheduled colonoscopy at this time due to past colon cancer, so it may have led her to do my endoscopy early.

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 your 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.