Celiac Disease Symptoms + how to get a diagnosis

With over 300 known celiac disease symptoms, it is no wonder there’s confusion. Doctors often look for only the most common symptoms and no two celiac patients experience the same reaction to gluten. Even family members can have varying symptoms, and your symptoms can change over time too…

This post contains:

• Common and less common symptoms of Celiac Disease
• My Celiac Disease symptoms 
• What to do if you suspect you may have Celiac Disease

Celiac Disease Symptoms

Common Celiac Disease Symptoms

Healthline lists these 9 symptoms as the most common for celiac disease:

1. Diarrhea
2. Bloating
3. Gas
4. Fatigue
5. Weight Loss
6. Iron deficiency Anemia
7. Constipation
8. Depression
9. Itchy Rash

Source: Healthline.com

Even while I wrote that I cringed - diarrhea AND constipation? Bloating and gas? Not only do they contradict themselves, many sound ridiculously unremarkable.

And I (or we - did you cringe too?) are not alone - this is EXACTLY why celiac disease is often misdiagnosed as Irritable Bowel Syndrome, food allergies, and quite a few other things with the same generic-seeming symptoms.

>> Were you misdiagnosed? Tell us the diagnosis in the comments below! The weirder the better, and doctor rants welcomed if needed 😉

My weird misdiagnosis: I was told I had anorexia nervosa because I was so malnourished and had osteopenia (the precursor to osteoporosis) at the age of 24. Good thing my partner was with me at this appointment -- we literally started yelling at the doctor about how much I ate…

Sidenote: Friends can vouch that my partner and I usually don’t yell at anyone, but we were SO frustrated, I was SO sick, and it was an utterly ridiculous diagnosis especially without even having a conversation with me.

I was also misdiagnosed with IBS, lactose intolerance as the stand-alone problem (it is a symptom of celiac disease as well and can go away after time on the gluten-free diet) and random skin rashes. The rashes always looked the same, no one biopsied them, and every doctor had a new diagnosis for them…

But perhaps you’re feeling frustrated because I didn’t even mention the many other, often scarier, celiac disease symptoms.

Other Celiac Disease Symptoms

I will list only a few, then refer you to a wonderfully comprehensive list on the Celiac Disease Foundation’s website: Celiac.org

Other celiac disease symptoms include:

• Peripheral Neuropathies (tingling in the hands and feet)
• Ataxia (lack of muscle control/ coordination)
• Canker sores
• Depression and/or Anxiety
• Liver disorders
• Weight gain
• Dental enamel defects 

Celiac.org’s celiac disease symptoms list is far more comprehensive and an excellent resource for you if you think you may have celiac disease. They show that the symptoms are often different between children and adults, and they even added a “quiz” feature for you to see if your symptoms line up. If your symptoms do line up (I took the quiz and shocker -- I might have celiac disease!!), they send you a letter to bring to your health care professional to help explain why you think you may have celiac disease.

Important Note: The tests for Celiac Disease require that you are currently eating gluten for positive results. Make your appointment prior to starting the gluten-free diet for best chance of an accurate diagnosis.

My Celiac Disease Symptoms

Like many people with diagnosed celiac disease, it took a loooong time to finally reach an accurate diagnosis. I started having digestive problems as a kid and they worsened significantly when I was a bagel-eating teenager.

When I was finally diagnosed, it was two to three weeks of being so sick I couldn’t get out of bed. That was after I began experiencing rashes, migraines, weight gain around the middle due to bloating (with weird stickly arms -- yes, I did look a bit like an oompa loompa), lactose intolerance, osteopenia, iron-deficiency anemia, and peripheral neuropathies (crazy tingling in my arms and legs). ALL of these symptoms and many more miraculously disappeared on the gluten free diet (HURRAY!!).

IMPORTANT: I meet people who were afraid to get a diagnosis because they know their life will need to change if the test is positive and they love bread. Trust me, I love bread too, and I’m not going to sugarcoat the lifestyle change -- it’s tough in the beginning, but it gets easier quickly as you learn more and meet other gluten-free people. 

>> But I feel ONE MILLION times better after my diagnosis and the time it took to heal. In fact, you’re reading my blog titled “Vibrantly g-Free” and I do live a vibrant life fuelled by delicious gluten-free foods. If I was not diagnosed with celiac disease, my blog might be something more like “Not-so-vibrantly feeling like $h*t”

You can read more about my Celiac Disease Diagnosis here.

What to do if you suspect you may have Celiac Disease

First of all, I’m sorry that you are not feeling well. If you’re here, it’s because you either think you may have celiac disease or a loved one may.

Here’s my recommendation for getting answers STAT:

1. Familiarize yourself with the comprehensive symptoms list on Celiac.org and consider taking their quiz.
2. Make an appointment to talk to your doctor ASAP. Testing involves blood tests and often an endoscopy.
3. If you find out you are joining the celiac club or decide that the gluten-free diet is right for you for other reasons, come back and hang out with us on Vibrantly g-Free!

Here are some posts to get you started:

• Gluten Free Grocery List + 10 Tips!
• How Celiac Advocates are changing Medical Care + how to talk to your doctor
• Gluten Free Shampoo and Conditioner

Hungry for more?

Check out our Recipe Index for loads of delicious GF recipes! All recent recipes are also dairy-free or include an easy dairy-free option 😉

With love and gratitude,

❤︎ Jamie

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