Celiac disease symptoms and gluten sensitivity symptoms can overlap, making it challenging to distinguish between the two conditions. Despite the growing awareness of the gluten-free diet, confusion still persists regarding the differences between these two conditions. The internet, while a valuable resource, also contributes to misinformation on this topic.
Healthcare providers play a crucial role in addressing this confusion and accurately diagnosing patients with celiac disease or non-celiac gluten sensitivity. It’s essential for providers to respond to patient inquiries with reliable information and develop informed diagnostic strategies.
In my practice, I encounter many patients with celiac disease (CD) or non-celiac gluten sensitivity (GS), and I’m often surprised by the inconsistencies in diagnosis and treatment provided by other healthcare professionals. Symptoms of celiac disease are frequently overlooked, leading to further confusion. Misinformation, often originating from online sources or well-meaning acquaintances, adds to the complexity.
Unfortunately, many patients have received inadequate or incorrect information about CD and GS from their healthcare providers. This underscores the need for improved education and awareness among medical professionals. Due to the limited coverage of celiac disease and gluten sensitivity in medical school curricula, patients and providers alike must take the initiative in educating themselves on these conditions. I hope this article contributes to that educational effort.
Starting a gluten-free diet to “see if it helps” without first testing for celiac disease is detrimental to patients and their families.
Outline
I hope that by reading this article, the medical community, patients and the general public will understand:
- The difference between CD and GS.
- The importance of testing for CD before starting a gluten-free diet.
- Reliable resources on CD and GS for both you and your patients.
Celiac Disease
Celiac disease is common.
- A groundbreaking study found the incidence of CD in people donating blood to be 1/133. More recent information shows the number is now closer to 1/100.
- If someone is symptomatic or has a celiac-related disorder such as anemia, diabetes, osteoporosis, short stature, infertility, or Down’s syndrome, the incidence of CD increases to 1/25.
- If there is a first-degree relative with CD, the incidence increases further to 1/22, irrespective of whether or not the relative showed any symptoms.
CD is an autoimmune, genetic, lifelong condition that can present at any age. It causes damage to the villi of the intestinal mucosa because of an abnormal immune reaction to gluten. Gluten is a protein found in wheat, barley, and rye. With continued ingestion of gluten, a person with CD develops malabsorption and subsequent complications.
Long-term complications of celiac disease include (but are not exclusive to): anemia, vitamin deficiencies, heart disease, osteoporosis, infertility, and neurologic symptoms. Celiac disease is a multi-organ system disorder that can affect the thyroid, liver, heart, and reproductive organs and the musculoskeletal system and brain. The risk of long-term complications decreases with adherence to a gluten-free diet.
Celiac symptoms are different than people think
Only 30-40% of celiac patients actually have GI symptoms at diagnosis
Celiac disease symptoms are not what you may think. The presenting symptoms ( primary symptoms at diagnosis) of celiac disease have changed dramatically over the last decade.
This disease is a chameleon and celiac disease symptoms vary from person to person. Once thought to be a “wasting” disease, we now know that 40% of CD patients are overweight or obese at diagnosis. Another common misconception is that gastrointestinal symptoms are required to initiate a diagnostic evaluation. However, gastrointestinal symptoms only occur in 30–40% of celiac patients at diagnosis. Their absence should not preclude an assessment.
“Atypical” celiac disease symptoms are now common, including factors such as anxiety, depression, anemia, fatigue, osteopenia, rashes, dental enamel defects, and aphthous ulcers. For a complete list of celiac symptoms, click here.
One or more of these may qualify as the presenting symptom. I want to reemphasize that only 30-40% of patients actually have GI symptoms at diagnosis. For example, I have frequently seen newly diagnosed celiac patients with only anxiety or only joint pain. They have no other symptoms – emphasis on no other symptoms. These were their “gluten-reaction” symptoms.
Also changed is the belief that CD is found primarily in Northern European Caucasians. The ethnic boundaries of CD are now blurred, as the disease appears to be equally common in other ethnic groups.
What Triggers Celiac Disease?
Three factors must be present to have active celiac disease
1. Gene.
Forty percent of the population carries one of the at-risk genes for celiac disease. Of that 40%, only 5% have active celiac disease. The reason for this is being investigated. Patients must carry either the HLA-DQ2 or the HLA-DQ8 gene to be at risk for celiac disease. You are at risk if you have either. You do not need both to be at risk. But, the presence of these genes is not diagnostic. The presence of either DQ-2 or DQ-8 only indicates a predisposition. If neither marker is present, celiac disease can be ruled out. Researchers are currently evaluating other genes for their involvement in celiac disease. Of note, there are currently no scientifically validated genes associated with NCGS.
2.Gluten.
Patients must be consuming gluten for CD to be active.
3.Environmental trigger.
Not all triggers are known, but identified triggers include early/repeated infections, pregnancy, and GI infections, antibiotic use at an early age.
Testing for Celiac Disease
Someone must be eating gluten for tests to be accurate.
Basic screening for celiac disease includes a serum TTG IgA and total serum IgA. Total serum IgA needs to be done to rule out IgA deficiency which occurs in about 10% of celiac patients. If IgA deficiency is present, the TTG IgG must be used but is less accurate. Further testing may be needed in those situations.
Some labs include a DGP-IGA and EMA in their celiac screen/panel or do these tests as a reflex. The confirmatory test is an endoscopic biopsy. The biopsy is indicated if tests are positive and are required for diagnosis.
Of note, many celiac centers and practitioners follow a more extensive evaluation process involving screening antibodies, genetic testing, clinical response to a gluten-free diet, and endoscopy. These protocols and other testing algorithms are beyond the scope of this article.
Related Article Here : 6 Reasons Test For Celiac Disease Before Starting A Gluten Free Diet
Treatment for Celiac Disease
Currently, the only treatment for CD is a strict, lifelong gluten-free diet—100% of the time
Therapies and cures for celiac disease are under investigation.
Pharmaceutical treatments undergoing clinical trials may offer relief by aiding in gluten digestion or reducing the intestinal permeability associated with celiac disease. However, none of these treatments are currently available on the market.
It’s important to note that current over-the-counter digestive enzymes marketed for gluten digestion are not suitable for individuals with celiac disease.
Among the most promising pharmaceuticals being studied are those designed to alleviate symptoms resulting from cross-contamination, such as when dining out. While these medications won’t provide a cure, their development could greatly improve the management of social and psychological challenges associated with celiac disease. Interestingly, the social dimension of celiac disease is often overlooked in medical discussions but is a significant concern for patients, ranking closely behind their physical symptoms.
The use of nanoparticle technology is currently being evaluated as a cure for celiac disease. Early results are promising.
Non-Celiac Gluten Sensitivity
If a proper evaluation for celiac disease is negative, but someone experiences symptoms after consuming gluten, they are commonly referred to as “gluten sensitive.”
When an individual has been thoroughly evaluated and celiac disease has been ruled out, yet they still exhibit symptoms upon gluten consumption, the diagnosis of ‘Non-celiac gluten sensitivity’ (GS) is given.
Cause of Gluten Sensitity
The pathophysiology of GS is an area of intense study, suggesting that it may encompass various entities rather than one distinct disorder. For some patients, their reaction may stem from the carbohydrate component of gluten, such as in FODMAP intolerance, while for others, it may be due to proteins like amylase trypsin inhibitors.
GS’s pathophysiology remains a rapidly evolving field with many unknowns. It does not appear to be autoimmune, and whether there’s a genetic or environmental trigger remains uncertain.
Diagnosis of Gluten Sensitivity
There is currently no validated test to diagnose GS. While some online labs offer blood, saliva, or stool tests for gluten sensitivity, they lack validation and are not recommended.
Given the lack of understanding regarding GS’s mechanism, diagnosis is primarily made by excluding celiac disease and wheat allergy while the patient is consuming gluten. If both are ruled out, a gluten elimination diet is initiated. Improvement in symptoms on this diet indicates gluten sensitivity. However, using a response to the gluten-free diet as a prognostic indicator may yield inaccurate results.
Treatment of Gluten Sensitivity
At present, a gluten-free diet may not be the initial approach for managing gluten sensitivity. Many cases are attributed to FODMAP intolerance. Once other conditions are ruled out, a low FODMAP diet may be recommended, ideally with guidance from a dietitian familiar with this approach.
As research progresses and understanding of gluten sensitivity improves, more targeted and individualized therapies are expected to emerge. Questions regarding the strictness of the gluten-free diet and its long-term complications are areas currently under investigation.
The terms gluten intolerance and gluten sensitivity are often used interchangeably. In medical terms, gluten intolerance actually refers to both celiac disease and gluten sensitivity. Gluten sensitivity only means “non-celiac gluten sensitivity”. In reality, however, the two terms are typically used by the public to mean anyone who gets sick from eating gluten.
Related Article Here : "Gluten" Sensitivity Symptoms Are Not Actually Caused By Gluten
Why You Must Test Before Starting A Gluten-free Diet
For accurate results, celiac testing requires the patient to be consuming gluten at the time of testing.
Guidelines for Celiac Disease Testing
Blood tests and biopsies are necessary to accurately diagnose CD. See the above link for more details.
Challenges of Starting a Gluten-Free Diet Before Testing
Initiating a gluten-free diet before testing for CD complicates getting an accurate diagnosis. Patients who experience symptom improvement on a gluten-free diet often hesitate to resume gluten consumption for testing, which poses a significant challenge to getting an accurate diagnosis.
Reasons to test for Celiac Disease
SEE MY ARTICLE 6 REASONS TO TEST FOR CELIAC DISEASE
Several factors highlight the importance of proper testing:
- Lifelong Nature of CD: CD requires lifelong management, making accurate diagnosis crucial.
- Unknowns about Gluten Sensitivity (GS): GS remains poorly understood, and subjecting individuals to a lifelong gluten-free diet unnecessarily can have significant social and psychological impacts.
- Dietary Requirements: While CD mandates a strict gluten-free diet, individuals with GS may benefit more from a low FODMAP diet. Choosing the appropriate diet can be life-changing for patients.
- Genetic Component: Missing a CD diagnosis may lead to delayed diagnosis in relatives with genetic susceptibility.
- Long-term Risks: CD carries long-term risks and complications, whereas the parameters for GS remain unclear. Follow-up care for celiac is needed. Follow-up guidelines for GS are not defined.
Insurance Reimbursement and ADA Accommodations
Obtaining a CD diagnosis enhances the odds of insurance reimbursement for medical visits and facilitates access to accommodations under the Americans with Disabilities Act (ADA). At present, GS is not covered under the ADA.
According to current estimates, only 17% of American patients with celiac disease are actually diagnosed.
Summary of the difference between celiac disease and gluten sensitivity
- Celiac is a genetic autoimmune condition. Gluten sensitivity does not appear to be genetic or autoimmune.
- Testing for celiac disease must be done when someone is eating gluten to have valid test results. There is currently no valid test for gluten sensitivity.
- We know many other conditions are associated with celiac disease, we are not sure of all conditions associated with gluten sensitivity.
- Gluten sensitivity may be several different disorders, including FODMAP intolerance, ATI intolerance, and intolerances to other components of wheat besides gluten.
- Celiac Disease is lifelong. The tolerance to gluten in someone with celiac disease does not ever improve or go away. Gluten sensitivity may be lifelong or temporary and can become less severe over time.
- The diet for celiac disease is a strict, lifelong gluten-free diet. The diet for gluten sensitivity is typically a Low FODMAP diet or a less strict version of the gluten-free diet.
- For people with celiac disease, the gluten-free diet is their treatment, i.e., “medication .” There is not a time when they should or can eat gluten. For people with gluten sensitivity many can eat gluten occasionally.
- People with celiac disease must be concerned about minute amounts of gluten-causing problems and long-term consequences. Gluten sensitivity does not typically require concern about small amounts of gluten or cross-contamination. This is an enormous difference in social situations.
