Non-responsive Celiac Disease: What to do?

By Dr. Mohsin Rashid MBBS, MEd, FRCPC.
Peterborough Chapter (July 2007)

Gluten causes injury to the small intestines in individuals with celiac disease. This can lead to a variety of symptoms and nutritional deficiencies. Removing gluten from the diet should heal the intestine and one would expect resolution of symptoms. However, in practice this is not always the case.

This problem is referred to as “nonresponsive celiac disease.”

Non-RESPONSIVE celiac disease (NRCD) is defined as a failure to respond to treatment with a gluten-free diet, or the recurrence of symptoms or laboratory abnormalities typical of celiac disease, while still on a gluten-free diet.

Although several months of treatment with a gluten-free diet may be needed to see a response, six months is often used as a time frame within which definite improvement should occur.

NRCD is a common problem that can affect from 7% to 30% of patients with celiac disease. The Canadian Celiac Health Survey of 2002 revealed that a significant number of adults with celiac disease continue to have symptoms despite being on a gluten-free diet. Only about half of the respondents had fully recovered from the abdominal pain and fatigue and 34% continued to have diarrhea.

Several studies have investigated the causes of NRCD. A limited number of etiologies account for the majority of cases. Gluten contamination of the diet is the leading cause of NRCD, accounting for a third to half the cases. This is often inadvertent, with the individual not being aware of it.

Irritable bowel syndrome (IBS) is the second most common cause of NRCD. This is often referred to as postinflammatory IBS. Although the gluten induced injury to the intestine heals, the nerves and muscles of the intestinebecome sensitized (“irritable”) leading to a variety of symptoms in response to even normal bowel secretions and contractions.

Other causes of NRCD are less common. Refractory celiac disease, also known as refractory sprue is another cause. This is defined as subsequent failure of a strict gluten-free diet to restore normal intestinal structure and function in patients who have celiac-like enteropathy. This can be a serious problem and may require treatment with immuno-suppressive medications.

Some individuals with celiac disease develop lactose intolerance. In many cases, this is a temporary problem; and as the intestine heals, the ability to digest lactose recovers. However, some patients may have developed permanent lactose intolerance, which is a common problem even in the healthy general population.

Occasionally, a patient with celiac disease develops pancreatic insufficiency. The Pancreas is an organ in the abdomen that produces a variety of enzymes that play a key role in the digestion of food. If the food cannot be digested it cannot be absorbed. The undigested food leads to diarrhea and subsequent weight loss. In many cases, this pancreatic problem is temporary and improves over time. Pancreatic insufficiency can be treated by taking oral pancreatic enzyme supplements.

Bacterial overgrowth is another cause of NRCD. Normally, there are relatively few bacteria in the small intestine. Inflammation and damage can provide an environment for growth of these bacteria. This can lead to diarrhea, poor absorption of fat and deficiency of iron and vitamin B12. Once identified, bacterial overgrowth can be successfully treated by the administration of oral antibiotics.

Some individuals with celiac disease develop microscopic inflammation in their colon (colitis) known as lymphocytic colitis and collagenous colitis. A colonoscopic examination with biopsies is needed to make these diagnoses.

A T-cell lymphoma (cancer) can also occur in a patient with celiac disease. In this case there may be ongoing symptoms despite a strict gluten-free diet. This is a rare but serious complication of celiac disease.

Finally, if an individual with celiac disease does not improve on a gluten-free diet, the diagnosis of celiac disease may be incorrect. The changes seen on the intestinal biopsy in celiac disease are not unique to this disease. Similar changes can also be seen in other conditions like intestinal infections, etc. Therefore, it is important that the diagnosis of celiac disease is firmly established in all cases.

In summary, there are several causes of NRCD, some common and others rare. If an individual is having ongoing symptoms despite being on a gluten-free diet, careful evaluation of the diet is the first thing that should be done. Often foods that are contaminated with gluten are being consumed. Any foods or beverages that cannot be confirmed to be gluten-free should not be consumed.

Careful label reading is essential. That is why it is so important for individuals with celiac disease and their support groups to lobby the government for food labelling legislation. It is imperative that there should be complete and clear labelling of all gluten containing ingredients on food packages. This will
help minimize the risk of consuming contaminated foods.

If symptoms persist, despite being on a strict gluten-free diet, the individual should contact his/her physician. Further investigations may be required to find the cause of NRCD. Careful follow-up with their physician and dietician is important for all individuals with celiac disease.

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