This post is for people who wish to understand more about silent celiac disease (also called latent or asymptomatic celiac disease). It is not intended as medical advice. Please read my disclosures.
Celiac disease is a rare but serious autoimmune disorder affecting approximately one percent of the worldwide population. The only treatment option for celiac disease is a strict, gluten-free diet.
People with celiac disease typically suffer from a slew of symptoms, including, but not limited to, bloating, gas, constipation, diarrhea, fatigue, nutritional deficiencies, joint or muscle pain, thyroid issues, migraines, canker sores, skin issues, and more.
More than 100 symptoms have been linked to celiac disease. These symptoms are triggered when someone with celiac disease eats gluten, a protein found in wheat, barley, rye, spelt and sometimes oats.
However, there are many people with celiac disease who have silent celiac disease and do not experience any symptoms correlated to the disorder.
In this article, I’ll cover the following:
- What is silent celiac disease?
- How is silent celiac is detected?
- The challenges of living with silent celiac disease.
- Treatment options for people with silent celiac disease.
What Is Silent Celiac Disease?
When someone has silent celiac disease, it means they are asymptomatic and don’t exhibit any of the classical symptoms tied to thee disorder.
The reason someone has silent vs. symptomatic celiac disease is unknown.
Celiac disease is typically categorized as follows:
- Classical Celiac Disease: This is when a patient exhibits “classic” gastrointestinal symptoms such as bloating, gas, diarrhea and constipation, etc.
- Non-Classical Celiac Disease: Non-classical celiac disease is classified as a patient who might have mild or no gastrointestinal symptoms yet exhibits other symptoms such as fatigue, migraines, low bone density, vitamin deficiencies, depression, failure to thrive (children), anxiety, and/or skin conditions such as dermatitis herpetiformis, etc.
- Silent Celiac Disease: Silent celiac disease doesn’t fit into either category. Patients have little or no symptoms that they can clearly correlate to celiac disease, yet they experience the same damage to their small intestines (villous atrophy) consistent with celiac disease.
How is Silent Celiac Disease Detected?
When a person has celiac disease, a blood test will detect anti-tissue transglutaminase (tTG) antibodies, and an intestinal biopsy will show damaged (flattened) intestinal villi.
Villi are the finger-like follicles that surround the small intestine and are responsible for nutrient absorption and distribution. Again, a celiac disease screening test can be positive regardless if classic symptoms are present.
Silent celiac is often discovered in one of two ways:
(1) First Degree Relative with Celiac: A large number of silent celiac cases come from people who get screened for the disorder after a first degree (and sometimes second degree) relative gets diagnosed.
Individuals with a first degree relative with celiac disease (parent, sibling or child) has a 4.8 percent higher risk of having celiac disease according to research published in the Journal of Pediatric Gastroenterology.
Other studies, including this one from the Mayo Clinic, found that a whopping 44 percent of close relatives of someone with celiac disease receive a positive blood test.
It’s widely accepted in the medical community to screen first-degree relatives for celiac disease due to this high genetic correlation, and it’s why there are so many asymptomatic or silent celiac disease cases.
If your celiac disease test is negative, but you have a first-degree relative with the disorder, you may want to consider undergoing genetic testing for celiac disease.
Genetic testing will help you determine if you even carry one of the genes and would be therefore, predisposed to the disorder. If you have one of the genes, annual screening would be necessary; if you don’t, it means you cannot have celiac disease as you must carry one of the genes in order to get celiac disease (you may still have a gluten sensitivity though). You can read more about what causes celiac disease in this article.
(2) Other Medical Screening: Other individuals find out they have celiac disease through routine blood work or when they’re screened for celiac disease due to non-gastrointestinal conditions, such as thyroid dysfunction or anemia.
This happens often and can feel like a shock to the system. In my book, Dear Gluten, It’s Not Me, It’s You, I write about a gentleman who went to the doctor to get a throat ulcer checked and came out with a celiac disease diagnosis.
The Challenges of Undiagnosed Silent Celiac Disease
Because celiac disease is difficult to diagnose, and due to its diverse clinical presentation, some experts estimate that 83 percent of people with celiac disease don’t know they have it, many of which may be asymptomatic and therefore have silent celiac disease.
This means that most people with celiac disease are still eating gluten, and are still damaging their small intestine, impairing their body’s ability to absorb nutrients and likely leading them on a path toward more disease.
Having to implement and stick to a strict gluten-free diet can be complicated for someone living a symptom-free life. Why fix what is perceived as fine?
This is why low adherence and cheating – on purpose or accidental – are most likely to occur when symptoms aren’t present nor persistent. It can even seem nonsensical to someone without symptoms to put themselves through the rigors of a gluten-free diet.
Researchers even found that individuals who experience no symptoms “struggle” to achieve strict gluten-free diet compliance.
However, even someone with silent celiac disease needs to take their disorder – and diet – seriously for many reasons.
First, someone with silent celiac disease experiences the same damage to their small intestines as someone with symptoms, and the long-term risks are the same too.
The long-term risks might be worse in someone with silent celiac because they may not be as careful about their gluten consumption and therefore are not properly “treating” their disorder. Even a little gluten has detrimental effects on your long term health, and I have documented why you shouldn’t cheat on your gluten-free diet in this article.
Additionally, it has been well researched that when someone has one autoimmune condition, their risk of getting another autoimmune disease greatly increases.
This researcher says you have a 25 percent more likely chance of getting another autoimmune disease if you’re not managing your first condition.
Finally, researchers say that people with untreated celiac disease are at risk for the same adverse effects as someone with symptomatic celiac disease, including but not limited to osteoporosis, joint pain, infertility, neurological problems, lymphoma, and other autoimmune disorders, such as thyroiditis.
How Is Silent Celiac Disease Treated?
There is still much to know and learn about silent celiac disease and the long-term consequences of the disorder.
However, experts agree that the treatment for silent celiac disease is the same treatment as someone with classical celiac disease, and the only treatment option is a gluten-free diet.
Here are some strategies to help someone with silent celiac disease ease into eating gluten free:
Never Minimize Your Disorder: Don’t say things like, “I have silent celiac so it’s not as bad for me if I eat a little gluten,” or “Because I don’t get symptoms, it’s okay if a little gluten touches my food.”
These disclaimers minimize your disorder both in your own mind and to others. Take it seriously and others will too. You have celiac disease. Period. No further disclaimer or explanation needed.
Plan Your Meals: Because you’ll be eating at home more, I highly recommend planning your meals and learning to cook with whole vs. packaged ingredients.
My popular gluten-free meal planning packs can help you create easy and tasty gluten-free meals for yourself and your family.
Read Labels: Become a disciplined label reader and really understand what you’re putting into your body. Learn to sniff out all sources of hidden gluten.
Eat Out Less: While I love eating out, mostly for the social aspects of it, I eat out much less often than I use to. Restaurants are notorious for not fully understanding what it takes to create a gluten-free meal, and cross contamination is rampant.
If you are going to eat out, read The Ultimate Guide to Eating Out Gluten Free so you can do so as safely as possible.
No Cheating: Even a little bit of gluten can set off a firestorm of inflammation in your body. Taking a little bite of gluten here or there, or having a designated cheat day, does nothing for you.
Do you or someone you love have silent celiac? I’d love to hear more about your experiences in the comments below. Please share.
I think we Silents are in our own category and I hope some studies will be done so I can feel that this gluten-avoiding is worth it. Sign me up!
Hang in there. You are not alone in this. Hugs!!
Thank you all for sharing your experience with Silent Celiac. I’ve been searching for soulmates since I was diagnosed last September (2020). I was a 66-year-old white female who had never had any usual digestive issues. This diagnosis was beyond a shock to me and others in my life. NOT that I hadn’t “given at the (autoimmune) office.” Low-thyroid in my 20’s no big deal; MS diagnosis in my 30’s, yes a big deal; osteoporosis in my 50’s, I’d been expecting that, but Celiac in my 60’s?
I’m a compliant patient and immediately cut gluten out of my diet, but do I feel better? No, but no digestive problems anyway.
It’s awfully hard to stay the course and I wish there were some easy test or something to tell me that I’m doing things right or that this diagnosis was a mistake to begin with.
ACK!
There is misinformation in your comment. This information you question is sourced https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/. And no one said it’s one size fits all. 🤔
There is a lot of misinformation here. There is no proof that the asymptomatic patient has the same damage as the symptomatic patient. doctors are changing their thinking. It probably is that the ares usually biopsied might have some damage but the rest of the small intestine that is not biopsied is indeed quite healthy. Celiac didease is not one size fits all like we are being lead to believe.
Thank you for this information. Our youngest daughter was diagnosed with Type 1 Diabetes at age 4 and two years later with celiac disease, which was found through routine yearly lab tests and affirmed through positive biopsy; she never exhibited any symptoms. My husband and I as well as our two other children were tested and my husband and oldest daughter were diagnosed with celiac disease. (We were able to trace it back to husband’s side of the family.) Both of them have always had stomach problems as well as other symptoms and we didn’t know the cause. We all have been on a strict gf diet for eight years now and everyone feels much better. Our youngest daughter’s yearly lab results are negative for celiac since we adhere to the strict gf lifestyle!
My 7 year old daughter has silent celiac. We had her checked out at 4 years old only because she had a really round distended belly. Her TtGs were 1388!!! We have gone on the GF diet and have never looked back. She just got tested and has only 12. It’s EXTREMELY difficult to eat out because she gets absolutely no reaction now when she gets glutened, so we have no real trust in whether or not there is hidden gluten or cross contamination. We bought a Nima sensor and that has added some assurance. It’s a blessing and a curse to be honest. Thankfully my child takes her diet restrictions very seriously— she owned it so maturely even at age 4.
My 9 years old daughter has type 1 diabetes since january 2019, and last february 2020 when she has to do the annual blood test, we knew that she start with celiac disease.
She has no symptoms about it. Since then it has been hard to adapt the new way of eat, and ceartainly we haven´t go out to eat.
Because of the pandemic she dosen’t have been gone to any celebration or school activity yet but we are worry about when it happend.
I have so-called silent celiac and was diagnosed four years ago. It was first identified via persistently low Vitamin D during my annual physical exams. Luckily, my doctor suspected something was wrong and sent me to an endocrinologist, who ordered a panel of tests, one of which was for celiac. The result was a shock to me, given that I’ve never felt unwell from eating gluten. But the results were clear, as was the damage to my gut and to my bones–i.e. osteoporosis.
The day after my diagnosis I began a completely gluten-free diet, with no backsliding and no temptation to do so. Of course I made mistakes early on, as we all do in learning to live with celiac, but never due to lack of effort. I’ve been aided enormously by my wife, who is very diligent and who has given up gluten herself so we can have a completely GF household.
I sometimes discuss with my celiac friends whether it is better to be symptomatic or asymptomatic. To be sure, I’m happy to have avoided gastric distress and brain fog and all the rest. But, on the other hand, had I felt pain from my celiac disease, I would probably have been diagnosed much earlier and avoided the osteoporosis.
My view: celiac disease is no fun but it’s not the end of the world. There are plenty of good GF things to eat. And constant diligence is necessary.
I have silent Celiac disease. I was diagnosed by a biopsy. I was having major heartburn so they did a scope to see what was going on. They automatically take a biopsy. After the biopsy they had me take a blood test so they could have a base line since it is cheaper to do a blood test if needed instead of doing another biopsy. My blood test came back negative for Celiac. I live on a gluten free diet. I have since been diagnosed with Rheumatoid Arthritis. My family has many autoimmune diseases. I have been gluten free for 2 years now. I feel fine.
Thank you for sharing this! I was diagnosed with “silent” Celiac Disease almost two years ago. Unfortunately, I probably had it, unknowingly, for a long time. Now I’m working hard to rebound from major nutrient deficiencies (what eventually led to my diagnosis) and fix a pretty screwed up immune system. Being a silent Celiac makes eating out (at restaurants or friends’ homes) super scary since I don’t experience the typical GI symptoms. I know I’ve been “glutened” at least twice in the past year, but unfortunately, I didn’t find out until after the fact. 🙁