Thinking of going gluten-free? The importance of ruling out celiac disease first

In this blog, I’ll explain why ruling out celiac disease (CD) should be your first priority, not just for yourself, but for your family members as well.

What exactly is celiac disease?

Most people know that celiac disease means you need to follow a gluten-free diet. But beyond that, there’s a lot of confusion. Curious family members and friends ask questions, such as:

“So, you’re just allergic to wheat?”

“You can have a little bit of gluten, right?”

“Aren’t wheat and gluten the same thing?”

NO!

Celiac disease is technically an autoimmune disorder that affects the small intestine. When someone who has celiac disease eats anything with the protein gluten (found in wheat, rye, or barley), an autoimmune reaction is triggered. This reaction causes the body to produce antibodies, which end up damaging the villi — small finger-like structures found on the lining of the small intestine. The villi have a very important role: absorbing nutrients from food. As the villi become more and more damaged, less nutrients are able to be absorbed. This begins the cascade of medical issues that make up the symptoms of celiac disease. There is no cure currently for CD. The only treatment is following a life-long gluten-free diet.

What are the symptoms of celiac disease?

When people think of eliminating gluten from their diet, it’s often based on digestive issues. While stomach and gut-related symptoms can be present for those with CD, digestive issues are more frequently observed in childhood cases of celiac disease. Here are some of the common digestive symptoms to be on the lookout for:

• Bloating
• Frequent, excessive gas
• Diarrhea
• Constipation
• Vomitting
• Stomach pain or cramps
• Fatty, foul smelling stool

Additionally, if you’ve been diagnosed with irritable bowel syndrome (IBS), but have never been screened for celiac disease, you will want to get tested for CD. This is especially important if you’ve followed the low-FODMAP diet and notice relief of your symptoms, as low-FODMAP eating is very low in gluten-containing foods.

You may be surprised to learn that other symptoms may be present as well. Seemingly unconnected health issues, such as vitamin and mineral deficiencies (specifically iron, B12, and vitamin D), fatigue, skin rashes, migraines, and infertility have all been linked to celiac disease. Because nutrient absorption is hindered in those with CD, people may present as underweight or be unintentionally losing weight.

Many of these symptoms are often seen as the primary health problem, but they are signs of a greater problem. The root of the issue is the damage that’s already been done in the body. Until gluten is removed from the diet, the villi will be ineffective at absorbing nutrients including vitamins, minerals and any supplements.

Those at a higher risk for developing celiac disease

Because celiac disease is an autoimmune disorder, those with other autoimmune diseases have a higher risk of developing CD. Some associated conditions are:

• Rheumatoid arthritis
• Type 1 diabetes
• Hashimoto’s disease
• Dermatitis herpetiformis
• Sjogren’s syndrome 
• Multiple sclerosis (MS)
• Addison disease
• Autoimmune hepatitis

The Celiac Disease Foundation provides a comprehensive list of symptoms common in children and adults. But some who receive a diagnosis of celiac disease have no symptoms at all.

So, what should I do if I think I have celiac disease?

What I’m about to say will sound very counterintuitive, but do not eliminate gluten right away! 

Let’s first talk about why proper diagnosis requires keeping gluten in your diet until all testing is completed. 

When gluten is eliminated before diagnosis, the antibodies used to aid diagnosis will begin to decrease in the blood. Also, the villi begin to heal. These are both positive things, but will skew the results of testing. Your doctor will not be able to properly diagnose you with CD, and you may discontinue the gluten-free diet, or allow for too much cross contamination, keeping you sick and experiencing negative symptoms. 

Having as little as 10 mg of gluten per day can cause symptoms in those with CD. That amount of gluten is found in approximately ⅛ of a teaspoon of all purpose wheat flour! Having a proper diagnosis can be helpful in knowing how diligent you need to be in avoiding gluten in foods, including non-food items you may ingest, like medications and lipstick.

How is celiac disease diagnosed?

There are 2 parts to the testing process. 

1. Blood work – antibody testing

Initial bloodwork will look for antibodies that indicate the body is seeing gluten as a threat and initiating an immune response to it. Some common antibody tests include tTg-IgA, EMA, and total serum IgA. Working with a gastroenterologist will ensure that the appropriate initial bloodwork is completed.

Positive blood results are not an official diagnosis of CD, but an indication to move on to the next portion of testing – an endoscopy of the small intestine.

2. Upper intestinal biopsy  

Biopsy of the small intestine is considered the “gold standard” for diagnosing CD. By obtaining tissue directly from the small intestine, your doctor will be able to examine the samples for villi damage that is typical of CD. Healthy villi will be tall and “finger-like.” Villi that has been damaged due to CD will be short and stubby. This visual confirmation will confirm a celiac disease diagnosis, and a life-long gluten-free diet should begin immediately.

Genetics and Celiac Disease

DNA testing may also be appropriate for those who have immediate family members with CD. The prevalence of celiac disease is 1 in 133 for the general population. But for those who have an immediate family member with CD, the prevalence is 1 in 22. This is because of the genetic component of celiac disease.

Individuals with CD have either the HLA DQ2 or DQ8 gene (or both). The presence of either of these genes is not a diagnosis, nor is it a guarantee that an individual will end up developing CD in their lifetime. But testing for these genes may help CD be caught sooner in at risk individuals. If the genes are not present, the individual will never develop CD.

If you have CD, immediate family members (parents, siblings, and children) should be screened to evaluate if they have the disease as well. Catching celiac disease early can prevent many of the medical issues associated with reduced nutrient absorption.

The bottom line…

Getting a proper diagnosis before going gluten-free can help prevent a lot of damage to your body, especially if the root issue is celiac disease. By having an official diagnosis, you can rule out other health issues that can have overlapping symptoms as CD. And if you have CD, but never diagnose it, you may continue to damage you small intestine by being too loose with your gluten-free diet. And finally, your family members can be more vigilant in screening early and often for CD.

If you think you or a loved one might have celiac disease or be at risk for developing CD, use this screening tool from the Celiac Disease Foundation