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Celiac Disease, Gluten, and Your Health
- Sarah Schafer, MD
- May 18, 2023
- 4 min read
Updated: 5 minutes ago
Celiac disease is a common Sjogren's comorbidity, impacting 1 out of every 10 Sjogren’s patients.
It is important to know if you have celiac disease because, if you do, eating even tiny amounts of gluten may cause lasting harm.
You can't know if you have celiac disease based on symptoms: you need to be tested.
“Without a timely diagnosis, celiac disease can lead to intestinal cancers, type 1 diabetes, osteoporosis, thyroid disease, multiple sclerosis, anemia, infertility and miscarriage, epilepsy, and more.” ~ The Celiac Foundation
What is celiac disease?
“Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide, but only about 30% are properly diagnosed.”
~ The Celiac Foundation
When people with celiac disease eat gluten, it damages the gut and causes widespread inflammation in the body.
If you have celiac disease, you must eliminate all gluten from your diet to stop the damage. Accidental ingestion of even tiny amounts of gluten causes intestinal damage, leading to digestive symptoms and widespread inflammation. This can result in nutritional deficiencies, lactose intolerance, peripheral neuropathy, and more. It is also important to restrict gluten if you have non-celiac gluten sensitivity, but the consequences of minor gluten exposure are not as severe.
“People with celiac disease who don't maintain a gluten-free diet have a greater risk of developing several forms of cancer, including intestinal lymphoma and small bowel cancer.” ~ Mayo Clinic
What are the symptoms of celiac disease?
Celiac disease is frequently misdiagnosed as irritable bowel syndrome (IBS). Sjogren’s and celiac disease have many overlapping symptoms. Some people with celiac disease have no obvious symptoms. That is why doctors should not rely on symptoms alone when deciding whether to test for celiac disease.
Some of the most common symptoms include:
gastrointestinal (GI) such as abdominal pain, nausea, diarrhea, constipation, and bloating,
neurological, such as migraines, peripheral neuropathy, and “brain fog”.
general, such as joint pain and fatigue.
Every Sjogren’s patient should be screened for celiac disease, regardless of symptoms, because, if you do have celiac disease, the sooner you stop the damage, the better your health outcome.
Most doctors do not know about the Sjogren’s-celiac disease connection, even though an estimated 10% of Sjogren’s patients have celiac disease, versus 1% of the general population. You may need to ask your doctor to screen you for celiac disease.
If you have symptoms, are at high risk, and/or have a positive screening test, ask for a referral to a gastroenterologist for a complete evaluation.
Take this quiz to determine your risk. At a minimum, a screening blood test (described below) should be done, even if you don’t have symptoms. Celiac disease tests are not accurate unless you have been eating gluten. Be sure to discuss gluten intake with your doctor before you do blood tests or biopsies. If you have been eating gluten-free, ask your doctor how to do a gluten challenge before your tests.
Screening tests are done to determine if further diagnostic tests are needed. Diagnostic tests are done to confirm the diagnosis.
Screening blood test
Sjogren’s patients should be screened for celiac disease using the tissue transglutaminase IgA (tTG-IgA) blood test, regardless of whether they have symptoms. Some gastrointestinal (GI) specialists also check IgA levels at the same time to reduce the risk of a false-negative test. The tTG-IgA test is almost always positive in celiac disease, but further testing is needed to officially diagnose the disease.
False negative blood tests for tTG-IgA my occur if you have IgA deficiency or you have been eating a gluten-free diet. About 3-5% of the population has IgA deficiency. Genetic tests HLA-DQ2 and HLA-DQ8 are the genes needed to develop celiac disease. A blood test for these genes is not a diagnostic test:
A negative test means it's highly unlikely (less than 1 in 100 chance) to develop celiac. Genetic testing can be a helpful rule-out test.
These genes are common. The vast majority of people who carry these genes do NOT develop celiac disease.
Diagnostic tests
A small intestine biopsy is considered the gold standard for diagnosis. It should be done if the tTG-IgA screening test is positive or if the patient is high risk.
What if I skip the tests and just stop eating gluten?
This is not a good idea. It is important to know if you have celiac disease. Having a positive response to a gluten-free diet does not tell you what you need to know. If you know you have celiac disease (vs. guessing), you should be seen by a GI specialist. People with celiac disease must be extremely careful to avoid eating even tiny amounts of gluten to avoid gut damage and long-term consequences. Many people who eat gluten-free for non-celiac reasons periodically “cheat” in small ways, and don't have the same risks if they accidentally ingest gluten. If you have celiac disease, you cannot afford slip ups because the effects of eating gluten (even if you don't feel them) can be severe. Learn why you should be tested before going gluten-free.
How is celiac disease treated?
The current treatment of celiac disease is a strict gluten-free diet. Many patients experience full symptom resolution by 6 months when they adhere to the diet. The gut lining usually heals in about one year.
It is common for newly diagnosed patients to accidentally ingest gluten. Going gluten-free requires more than just eliminating wheat from the diet. Gluten is hidden in many foods, including soy sauce, vegan meat substitutes, ice cream, and fermented vinegars.
What about non-celiac gluten sensitivity?
Non-celiac gluten sensitivity occurs in Sjogren’s but the number of patients impacted is unknown. This is not a wheat allergy, but a food intolerance that responds to a gluten-free diet. Diagnosis of non-celiac gluten sensitivity is done with a food challenge test once celiac disease has been ruled out. Learn more here.
Is gluten bad for you if you don’t have celiac disease?
For most people, including people with Sjogren’s who don’t have celiac disease or non-celiac gluten sensitivity, gluten is perfectly fine to eat.
Learn more about gluten and its impact on health.
