What Your Doctor May Not Know About Celiac Testing Could Impact Your Test Results

For many people the weeks, months and years prior to a celiac diagnosis are plagued with seemingly inexplicable aches, pains and symptoms that run the gamut from poor tooth enamel to infertility. So getting a correct diagnosis is essential to getting you on the road to better health.  That’s where the TIMING of your testing and your CURRENT DIET are critical in getting a correct diagnosis for celiac disease. It appears many  health care professionals are not aware of these two factors, which is why YOU should be.

Celiac 101:  Must eat gluten to get an accurate test result

Some doctors tell patients to go gluten-free and just see how it goes, without having performed the initial blood test for celiac disease.  The celiac panel of tests is a first step in getting — or even possibly ruling out — celiac disease.  However, it will likely NOT BE ACCURATE if you are on a gluten-free diet for an extended period of time.  This is where the aforementioned timing and diet come into play.

The National Institutes of Health — National Institute of Diabetes, Digestive and Kidney Diseases says having gluten in your system at the time of testing is essential to get an accurate reading.

“If you want an accurate celiac test result, you must be eating some form of gluten.   Before being tested, one should continue to eat a diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present.”

Need a second source?  How about the Mayo Clinic.

“One thing you won’t want to do is to restrict your diet. If you stop eating foods that contain gluten prior to getting tested for celiac disease, you may alter the test results.”

In my family alone, two gluten-free people have been told to go gluten-free before an official diagnosis.  One was my daughter.  She was incredibly sick at 15-months old when the blood test came back positive. Our General Practitioner sent me to the internet to learn more about it and off I went. I got working on her gluten-free diet right away and I saw instant results.  A few weeks later when we met with her gastroenterologist, I told her I had gotten her started on the diet, but I don’t think she was too worried about her gut healing just yet.  Emma’s biopsy was done within a month of her blood tests.  She was on the road to healing, but she still clearly had celiac disease, just based on the pictures (the official biopsy result would eventually confirm it).

The opposite could be said for my other family member whose doctor has told him to go gluten-free because it appears to be helping him with health issues.  The doctor has been testing him for celiac disease (because our significant family history).  But he appears to be doing it only when my family member is gluten-free.  Thus, his blood test results are negative and he hasn’t had a biopsy — leaving things relatively unknown.

Here’s why you need to have gluten in your system during testing, because the healing process can begin rather quickly according to the Celiac Sprue Association.

“It takes only three to six days for the intestinal lining (the mucosa) to show improvement. Within three to six months, most symptoms subside as the mucosa returns to its normal (or nearly normal) state.”

If you remove the gluten, symptoms (including damage to your gut) go away.   With your gut healing, your blood (serologic) tests and biopsy results  may come back negative, causing confusion in the diagnosis. Doctors may say you don’t have celiac, when you really do.

Bottom Line: If you’re going to go through all this trouble to get tested you may as well do it right the first time.  It is important that you know this, even if your doctor does not.

Yes there are always exceptions, i.e. a parent who already has one celiac child may see the symptoms in their other child and just get him or her going on a gluten-free diet.  As long as they understand the consequences in testing before beginning the diet, that’s a decision that is up to them. Doctors may not agree because many feel if it’s not celiac then this child is needlessly on a gluten-free diet.  They I am sure would want them tested.

There are many things to consider when approaching a celiac diagnosis.  I hope this article helps you with your education and decision-making when it comes to celiac testing.

*I am not a medical doctor, so you should always discuss these things with a doctor — knowledgeable in celiac disease.

Tags: celiac, diagnosis, diet, gluten-free, testing