Celiac/Sensitivities Testing

This too is an area that you will find to be filled with varying opinions if you compare traditional western medicine’s theories vs those of naturopathic doctors, allergy specialists, nutritionists, etc. What I can tell you from my experience is that most insurance plans will cover testing for celiac disease, typically done via a biopsy of the small intestine, and if you are like the many of us who have a gluten sensitivity rather than full blown celiac, the results will come up negative, however, you may well be suffering due to a gluten sensitivity.

Below outlines some general options for you to consider when deciding which tests are right for you. As always, I would encourage you to ask your doctors if they will help you with any tests you feel are needed to best diagnose your conditions, though I wouldn’t be surprised if you’re met with some resistance. If so, its a good idea to seek out a nutritionist or naturopathic doctor who will be able to review the many testing options available (unfortunately most labs require an order from a licensed specialist, though I did just run across this site which appears to offer tests direct to consumers. If you do chose to have some testing from them, please let me know your experience so I can update the site!

According to the experts…

Strong evidence shows that in order to develop celiac disease, a person must have one or both of two genes known as HLA-DQ2 and HLA-DQ8. The major environmental factor, of course, is gluten ingestion. Gluten proteins interact with the celiac disease genes to trigger an abnormal immune response that damages the lining of the small intestine.

More than 97% of patients with celiac disease have at least one of the two genes. Most patients (more than 90%) carry the DQ2 gene. Fewer than 10% carry the DQ8 gene. As more and more studies are conducted, researchers will likely discover additional genes that predispose an individual to celiac disease. However, many professionals will argue that having these so-called “celiac disease genes” does not mean you’re guaranteed to have celiac disease. Having the genes only means you have a risk of someday developing celiac disease. On the other hand, if you don’t have these genes, your odds of developing celiac disease are slim to none.

Testing for Celiac is typically done via blood and/or stool tests, though it’s often suggested that you have a colonoscopy to determine if there is intestinal damage to your villi. Villi are the linings of the large and small intestines which are damaged due to the presence of gluten in those with Celiac disease. A colonoscopy will not tell you if you are gluten sensitive though, and many patients with Non Celiac Gluten Sensitivity go undiagnosed if they rely solely on the colonoscopy.

To confirm a diagnosis of celiac disease, a biopsy of the small intestine is examined to detect damage to the intestinal villi. However, given the invasive nature and cost of a biopsy, antibody tests are often used to identify those individuals with high probability of having celiac disease. Villous atrophy may be present only in the duodenal bulb, so a biopsy of this region should always be including when diagnosing celiac disease. Adherence to biopsy guidelines recommended by the AGA in 2006 – that at least four samples be submitted – doubles the probability of a celiac diagnosis.

Other tests may be ordered to help determine the severity of the disease and the extent of the complications a person may experience, such as malnutrition, malabsorption, and the involvement of other organs. Tests may include:

Since those with celiac disease may also experience conditions such as lactose intolerance, celiac tests may be done in conjunction with other intolerance and allergy testing.

What do the test results mean?

Gluten Intolerance:
A gluten intolerance can exist even when a celiac test is negative. A gluten reaction usually begins to show up in the stool or the saliva. As the seriousness of the conditions increases it will then show up in the blood. Our first choice for gluten intolerance testing is the stool test from the Food Allergy Testing Group which also includes transglutimase antibodies for auto immune reactions from gluten.

Celiac disease is a unique example of auto-immunity, since early serological diagnosis and dietary treatment can revert the autoimmune process and can prevent its severe, sometimes life-threatening complications. Therefore, the common wisdom among experts in the field supports the notion that individuals affected by celiac disease should be treated, irrespective of the presence of symptoms and/or associated conditions.

Note that there is speculation as to whether you need to re-introduce gluten to your diet in order to gain a positive celiac result, and in fact, many doctors now believe the danger of doing so far outweighs the potential results.  In fact, when following updated guidelines for testing, is not necessary. See this brief Q&A below from Celiac.com specialists:

Question:  Do I have to re-introduce gluten in order to have an accurate gluten sensitivity test done?
Answer: Yes and No

‘If a person knows they are sensitive to gluten and have gone on a gluten-free diet, and want to know if they can have gluten again, then a  challenge is in order (reintroduce gluten). THIS IS STRONGLY NOT RECOMMENDED. The gluten challenge has many cases of people who were damaged (some permanently) from the reaction to reintroducing gluten Even Small Amounts of Gluten Cause Relapse in Children With Celiac Disease, Journal of Pediatric Gastroenterology and Nutrition,  and it is no longer a requirement for diagnosing celiac disease.’

In my own words…

It’s quite common among those of us who are gluten sensitive, allergic or intolerant to have stories of doctors who refused to continue with testing based upon standard lab results coming up negative. While searching online, you can come across hundreds of posts of people asking for help on forums related to gluten allergies and sensitivities where they will post their lab results followed by comments that their doctors claim they are fine, however, they are continuing to be plagued by symptoms related to celiac or gluten sensitivities.  The truth is, if you want more tests, and they won’t endanger you, your doctors are required to give them to you; if they refuse then move on.
I want to encourage and empower you. A doctor does not control your medical life; I respect the medical profession and professionals, however, just because someone is a “doctor”, it doesn’t mean they are always right. I was personally misdiagnosed for more than 15 years, with chronic symptoms and signs of celiac, however, even after a colonoscopy came up negative, I was still fighting for more tests as I KNEW I was dealing with a gluten sensitivity. Fortunately I found a naturopathic doctor and nutritionist who guided me along the right path to finding some comfort from all the symptoms. If you need help in finding a good doctor who will act as an advocate for your healthcare, you can contact the Celiac Foundation and they offer a search function for doctors who are Celiac and/or Gluten Sensitive focused.
Whether you have a test, or use the elimination/reintroduction method, the bottom line is you must remain your own health advocate. There are many wonderful medical professionals who will help you along your journey, so be diligent when you research; call their offices and ask questions before paying for a co-pay visit.  Seek out local chapters of the celiac groups, and research suggested doctors on celiac.com’s member forums.
Remain diligent and persevere in your healthy quests!