How Strict is Strict?

Celiac.com 12/03/2022 - Studies estimate that the number of celiacs who follow a strict gluten-free diet ranges between 30-40%. We receive a number of calls from people with celiac disease who don’t quite follow the gluten-free diet. Others have a hard time understanding why they need to follow the diet when they were asymptomatic to begin with. Then we hear from worried parents, scared that they may have given something to their toddler with celiac disease that caused familiar gluten-reaction symptoms.

While some gluten ingestion in people with celiac disease is intentional, others ingest gluten accidentally or cause another to do so. When an individual calls the University of Chicago Celiac Disease Program, we try to assess the reason behind the gluten ingestion, and often find that it is the result of a lack of access to a knowledgeable dietitian at the time of diagnosis (Often, this is found when a caller articulates that they were unaware of problems like cross-contamination, the gluten-content of medications or they needed to ask more questions when eating out at a restaurant). Fortunately, this is a relatively easy problem to remedy. We offer referrals and dietary resources, and will send our care package to those who require it.

Celiac.com Sponsor (A12):
Others callers choose not to follow the diet, or to allow themselves “rewards” on special occasions or when they feel stressed. We often hear from people who prepare gluten-containing meals for the rest of their family which they cannot resist, or they eat the meal because they are not willing to prepare themselves a gluten-free meal. Some who travel on business do not wish to call attention to their dietary needs in front of their boss or colleagues. Sometimes, all that is required is guidance regarding how to place an order in a restaurant, how to prepare ahead of time for a business breakfast, or meal preparation tips.

All of the people who call our program regarding their gluten ingestion, regardless of their circumstance, are motivated by fear. Parents often talk about their fear of poisoning their child. Some adults eat very little due to fear of gluten contamination. While it seems of the utmost importance to establish the medical need for a strict gluten-free diet, psychologists and others would probably agree that human beings are seldom motivated to adopt life-long behaviors out of fear.

It seems fair to take a brief look at what we know, and what we don’t know about the need to follow a 100% gluten-free diet, in order to replace fear with knowledge.

First, it is important to examine how a research study would be designed to measure the effect of minimal gluten ingestion (i.e., the purposeful or unintentional consumption of gluten) in a group of individuals with celiac disease.

In order to test this question, we would need a group of people with celiac disease to knowingly or unknowingly ingest gluten. People with celiac disease who already ingest gluten would not be eligible because they would bias the result. So a randomly selected group of celiacs would be needed to participate in the study. These individuals would need to eat gluten in small amounts and be followed for five, ten or more years. Then, any results would need to be confirmed in other randomly selected groups of celiacs to rule out any effect of disease status, age, gender, geography, dietitian instruction, etc.

Here’s the catch—even if it were theoretically possible to obtain a group of people to knowingly participate in studies, the studies would never be approved based on ethical grounds. Hospitals that conduct studies and the physicians who run them are governed by a code of ethics that does not permit a patient to receive a procedure or be exposed to any type of intervention that is known to be harmful to them.

So, the question is, how do we determine, in a less direct way, the effect of gluten ingestion in people with celiac disease?

Professor Giovanni Corrao and colleagues attempted to address this question through a prospective cohort study which enrolled 1,072 patients between 1962 and 1994. The study was designed to measure important factors that influenced mortality in people with celiac disease and their immediate relatives.

The study, published in the Lancet in 2001, found that mortality in people with celiac disease was most significantly affected by diagnostic delay, pattern of presentation, and adherence to the gluten free diet. A delay in diagnosis of more than one year and a severe presentation of celiac disease at diagnosis doubled the observed deaths during the study. Non-adherence to the gluten-free diet, defined as eating gluten once a month or more, increased the relative risk of death six-fold. These factors were highly statistically significant.

There are limitations to this study, however, including the fact that people diagnosed in the 1960’s were more likely to present with a severe case of celiac disease, including intestinal lymphoma. Researchers also found that people with mild or symptomless celiac disease had a slightly increased risk of death; it’s also likely that these people were diagnosed later on in the study when more screenings were available, decreasing the length of the delay in diagnosis.

Alessandro Ventura and colleagues conducted an important study on the presence of autoimmune disorders in people with celiac disease. Published in 1999 in the journal Gastroenterology, these researchers recruited 909 patients with celiac disease, as well as 1,268 healthy controls and 163 patients with Crohn’s disease. The results were dramatic, and highly statistically significant.

Ventura found that the risk for developing other autoimmune disorders increased relative to the age of the person with celiac disease at diagnosis. For instance, a child that is 2 years of age has a 5% chance of developing another autoimmune disorder, but a person over 20 years of age at diagnosis has a 34% chance.

Ventura and his colleagues equated the age of a celiac at diagnosis with the number of years that individual had been exposed to gluten, and postulated that the increasing risk was related to gluten exposure. Other researchers have reported results for and against Ventura’s claim, but a consensus has yet to be reached.

Osteoporosis and osteopenia studies have almost consistently supported the benefit of a strict gluten-free diet in rebuilding bone mass, even in post-meopausal women and patients with incomplete mucosal recovery. Researchers note, however, that the diagnosis should be made early and the diet followed strictly.

These studies indicate that in people who have not yet been diagnosed with celiac disease, gluten is very harmful. However, Marco Maki and colleagues have noted that the strict definition of celiac disease, that the intestinal mucosa flattens when gluten is consumed, is not necessarily true. We know that the damage that is created in the intestine can be patchy and variable, depending on the individual. According to the celiac prevalence study conducted by Alessio Fasano and colleagues, most Americans (diagnosed in the study) have Marsh 2 lesions, which indicate less damage in the intestine.

What is a celiac to do?

Scientists and researchers in the U.S. and throughout the world do agree on one thing: There are no clinical data to sufficiently establish a safe threshold for gluten ingestion in people with celiac disease.

This includes the well-known Codex Alimentarius Standard for gluten-free foods, which allows 200 parts per million as an acceptable threshold value in gluten-free foods. An independent observer group to the Codex commission (The Prolamine Working Group) has been working to establish a reference gliadin for use in uniform testing programs by food manufacturers, and advocates for a single testing standard. These researchers, including Martin Stern, Paul Ciclitira, Conleth Feighery and Ricardo Troncone, have openly questioned the Codex standard of 200 ppm in gluten-free foods and have reiterated that there is little clinical data to back up the Codex standard that a small amount of gluten in the diet of celiacs is safe.

Like the researchers who have conducted studies involving celiac patients, physicians who treat people with celiac disease also have an ethical standard, to “first do no harm.” At this time, that means that physicians and dietitians must educate patients to follow a 100% gluten-free diet.

If you’re accidentally ingesting gluten, or have accidentally offered your child a gluten containing food, chances are you have not caused a problem that will lead to life-long complications. However, if you are consistently ingesting gluten or having repeated accidents, it is more likely that persistent damage may exist in your intestine leading to potential problems down the road.

In either case, find out more about the gluten-free diet by contacting one of your national or local celiac organizations and get back on track. We’re here to help.