If you’ve recently been diagnosed with Celiac Disease, or suspect you might have it, you’re not alone, and you’re in the right place. Celiac Disease can feel overwhelming at first, especially when you’re trying to understand what’s happening in your body and what it means for everyday life.
In this post, we’ll cover:
- What Celiac Disease is
- How it affects the digestive system
- Common symptoms in adults and children
- Why it’s not a food allergy
- A bit of personal perspective and history to help it all make sense
My goal is to give you a clear, supportive foundation so you can feel more confident moving forward.
So, What Is Celiac Disease?
The Celiac Disease Foundation defines Celiac Disease as a serious autoimmune disease that occurs in genetically predisposed individuals, where ingesting gluten leads to damage in the small intestine.
Gluten is a protein found in wheat, barley, and rye. For people with Celiac Disease, gluten triggers an immune response that attacks the small intestine, specifically the lining that helps absorb nutrients.
What Does Autoimmune Mean?
An autoimmune disease is a condition in which the body’s immune system mistakenly attacks its own healthy tissues. According to the National Institutes of Health, this immune response can cause inflammation and damage throughout the body.
Other autoimmune diseases you may have heard of include:
- Type 1 diabetes
- Rheumatoid arthritis
- Inflammatory bowel diseases
One important thing to note: Celiac Disease is NOT a food allergy.
The American Academy of Allergy, Asthma & Immunology defines an allergy as an abnormal immune response to a typically harmless substance (an allergen). While allergies can be serious and even life-threatening, the immune mechanism involved is different from Celiac Disease.
That said, when eating out, many people with Celiac Disease do explain it as an “allergy.” Why? Because most people understand the seriousness of allergies, while fewer truly understand Celiac Disease. Using that language can sometimes help ensure safer food handling.
The Genetic Component of Celiac Disease
Celiac disease develops in people with a genetic predisposition. You can inherit the gene from a parent, but having the gene alone does not guarantee that you will develop the disease. Researchers are still learning why Celiac Disease develops in some individuals and not others.
After a Celiac Disease diagnosis, it’s recommended that first-degree relatives, think parents, siblings, and children get tested, as they have about a 1 in 10 risk of developing Celiac Disease.
Important note: If you’re considering being tested, continue eating gluten before the test, or test results may be inaccurate.
A Personal Note
In my family, my dad received his diagnosis first, and we later learned that I inherited the Celiac gene as well. You can learn all about my diagnosis story here. My sister also carries the gene. And my grandparents, they’re a different story. Although we know the genetic nature of Celiac, neither of them ever tested. And it’s still a mystery which of them carries the gene.
How Celiac Disease Affects the Digestive System
To understand Celiac Disease, it helps to understand a bit about digestion.
The digestive system starts at the mouth and ends at the anus. Food travels from the mouth to the stomach, then into the small intestine, where most nutrient absorption occurs. After that, it moves into the large intestine. In the large intestine, the body absorbs water, and waste then exits through the rectum and anus.
Accessory organs such as the liver, pancreas, and gallbladder support digestion but aren’t technically part of the digestive tract.
The Role of the Small Intestine
Celiac Disease primarily affects the small intestine, which plays a critical role in absorbing nutrients and some water. Damage here can have wide-reaching effects on overall health.
Inside the small intestine are villi and microvilli tiny, finger-like projections that increase the surface area for nutrient absorption.
When someone with Celiac Disease eats gluten:
- The immune system attacks the small intestine
- Microvilli become damaged or flattened. See image here of damaged microvilli.
- Nutrients are not absorbed effectively
Over time, this can lead to nutrient deficiencies and malnutrition if gluten exposure continues.
Nutrient Deficiencies in Celiac Disease
If you’re newly diagnosed, it’s important to talk with your doctor about testing for nutrient deficiencies. Common deficiencies seen in untreated or newly diagnosed Celiac Disease include:
- Iron
- Folic acid
- Vitamins B6 and B12
- Vitamin D
- Copper
- Zinc
Nutrient deficiencies can be detected through blood tests. Ask your healthcare provider to order bloodwork to check for nutrient deficiencies.
A quick but important note on supplements:
Please talk with your doctor before starting any supplement regimen. Supplements can interact with medications or affect other health conditions. If you are deficient your doctor may prescribe high dose supplements. This will depend on your bloodwork. I do not recommend supplementing single nutrients without first consulting your healthcare provider.
Symptoms of Celiac Disease
There are over 300 known symptoms associated with Celiac Disease, and they can affect many systems in the body not just digestion. Symptoms also often differ between adults and children.
GI Symptoms in Adults
- Diarrhea
- Bloating and gas
- Abdominal pain
- Nausea and vomiting
- Constipation
- Weight loss
- Fatigue
Non-GI Symptoms in Adults
- Anemia (often due to iron deficiency)
- Osteoporosis or osteomalacia
- Itchy, blistering skin rash (dermatitis herpetiformis)
- Mouth ulcers
- Headaches
- Numbness or tingling in hands and feet
- Balance issues or cognitive impairment
- Joint pain
- Reduced spleen function (hyposplenism)
GI symptoms in Children:
- Chronic diarrhea
- Nausea and vomiting
- Constipation
- Gas
- Pale, foul-smelling stools
- Swollen or distended belly
Non-GI symptoms in Children:
- Failure to thrive (in infants)
- Damage to tooth enamel
- Weight loss
- Anemia
- Irritability
- Short stature
- Delayed puberty
- Neurological symptoms, including ADHD, learning disabilities, headaches, lack of coordination, or seizures
Silent (Asymptomatic) Celiac Disease
Some people have silent or asymptomatic Celiac Disease, meaning they have intestinal damage but few or no noticeable symptoms.
Because they don’t “feel sick,” it can be tempting to be less strict with the gluten-free diet. However, intestinal damage is still occurring, and a strict gluten-free diet is still essential to prevent long-term complications.
My Symptoms and a Word of Encouragement
My personal symptoms included abdominal pain, gas, and diarrhea. Thankfully, after more than 10 years of living gluten-free (and lots of practice), I don’t have accidental gluten exposure as often as I once did. Knock on wood.
With time, education, and self-advocacy, it does get easier. And if mistakes happen (because they sometimes do), I hope you give yourself grace. Rest, recover, and learn from the experience.
Being hard on yourself after an exposure usually makes things worse, not better. My goal as a dietitian is to help people with Celiac Disease live their best gluten-free life, not a perfect one.
A Brief History of Celiac Disease
I always find it helpful and honestly kind of fascinating to look at where our understanding began.
In the 1920s, people with Celiac symptoms were often prescribed a banana-based diet, along with other naturally gluten-free foods like fruits and vegetables. Many patients felt better, though no one fully understood why.
When gluten-containing foods were reintroduced, symptoms returned.
It wasn’t until the 1950s that scientists identified gluten as the component causing intestinal damage in people with Celiac Disease.
Thankfully, today we know many more foods that are safe and while I enjoy a banana now and then, I’m very glad it’s not my only option.
Final Thoughts
I hope this overview of Celiac Disease helped you better understand what it is, how it affects the body, and why strict gluten avoidance matters so much.
If you’re newly diagnosed, know this: you don’t have to figure it all out at once, and you don’t have to do it alone.
In future posts, we’ll dive deeper into gluten itself, label reading, eating out, and building confidence in your gluten-free life.
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You’ve got this and I’m really glad you’re here.
Sources
American Academy of Allergy, Asthma & Immunology. Allergy Defined.
Celiac Disease Foundation. Symptoms of Celiac Disease.
Celiac Disease Foundation. What is Celiac Disease?
Christine Miller. Human Biology: 15.6 Accessory Organs of Digestion.
M.S. Losowksy. A History of Celiac Disease.
National Cancer Institute. Definition of Autoimmune Disease.
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