Seven Reasons Someone With Celiac Disease May Not Be Responding To A Gluten Free Diet

If you have been diagnosed with celiac disease and have implemented a gluten free diet but you still experience symptoms, then you need to determine the reason why. Approximately 20% of people diagnosed with celiac disease will have persistent symptoms even after starting on a gluten free diet. There are many reasons for this but the seven most common are:

1. Your Diet is Not 100% Gluten Free

The most common reason for persistent symptoms is that you continue to ingest gluten, either knowingly or unknowingly. Cross contamination due to improper food preparation techniques is one of the most likely causes of this. Even a crumb of gluten can make someone with celiac disease ill, so good kitchen procedures need to be implemented.

There are so many sources of “hidden” gluten that a person with celiac disease needs to be aware of. For example, if you take communion it will have gluten in it. My daughter has a specially prepared gluten free host administered to her by her priest. Check to make sure that your hair products and make-up are gluten free, especially lipstick which is easily licked and swallowed. If it is a child with celiac disease make sure they have gluten free playdoh and do not share other children’s food. Gluten is often in medicines as well so that is another source of gluten contamination.

Gluten is often hidden in foods you may not suspect so it is really important to learn how to read labels. Also a café of restaurant meal may be gluten contaminated even though it states it is gluten free on the menu, so only dine at cafes and restaurants you can trust. Celiacs are encouraged to meet with a dietitian knowledgeable about celiac disease and the gluten free diet to learn about the “hidden” source of gluten in food.  

 Read more about how to achieve a 100% gluten free diet in my book about Gluten Free Cooking http://www.cooking.what-is-gluten-free.org/

2.   Microscopic Colitis, Crohn’s Disease and Ulcerative Colitis

People with celiac disease have an increased incidence of microscopic colitis and inflammatory bowel disease such as Crohn’s disease and ulcerative colitis. Microscopic colitis is an inflammation of the colon, or large intestine; Crohn’s disease is a chronic inflammatory disease of the digestive tract and ulcerative colitis is type of inflammatory bowel disease that causes sores in the colon. A colonoscopy is required to diagnose these.

3.   Small Intestinal Bacterial Overgrowth (SIBO)

Bacterial overgrowth is a condition in which unusually large numbers of bacteria are present in the small intestine. The types of bacteria found in the small intestine are similar to the bacteria found in the colon. This is usually diagnosed by a hydrogen breath test.

4.   Pancreatic Insufficiency

Pancreatic insufficiency is the inability to properly digest food due to a lack of digestive enzymes made by the pancreas. This can be diagnosed by the measurement of enzymes in the stool.

5.   Other Food Intolerances

People with celiac disease may also have other food intolerances such as lactose or fructose intolerance, both of which can be diagnosed by a hydrogen breath test. Some research has shown that FODMAPs (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) may be responsible for the symptoms of IBS (irritable bowel syndrome) and/or inflammatory bowel disease. Sufferers may benefit from a diet low in FODMAPs.

6.   Refractory Celiac Disease

Refractory celiac disease, also known as refractory sprue, affects up to 5% of people with celiac disease.  Unfortunately for this group of patients, the damage to the villi in the small intestine does not heal despite being on a gluten free diet. These patients are usually treated with steroids and immunosuppressant’s.

7.   Diabetes Type 1

Celiac disease and type 1 diabetes are genetically based disorders sharing similar genes (DQ2 and DQ8). That is why they both often occur in a susceptible individual. About 3.5 to 10 percent of individuals with celiac disease develop type 1 diabetes and vice versa. Diabetes is usually diagnosed first because the symptoms are more easily recognized and can be picked up with a general blood or urine test for sugar.

The symptoms for each mimic other diseases and therefore diagnosis can be quite confusing. If you suffer from any of the related symptoms it is critical to consult a doctor for a proper diagnosis.

Both diseases are activated by environmental triggers and have increased risk for other associated autoimmune diseases.

Summary 

So if you are totally sure that you are 100% gluten free, then it may be time to revisit your doctor because these other diseases could exist alongside your celiac disease. Your doctor may need to run other tests to determine to cause.

The University of Chicago, research center for celiac disease in the U.S., once posted that:

“While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal”

This goes to show that being sure that you are on a 100% gluten free diet if you have celiac disease is critical.  Read more about how to achieve a 100% gluten free diet in my book about Gluten Free Cooking  

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