Survey Reveals Top Symptoms for Undiagnosed Celiac Disease

I am always amazed at how many people lived for years knowing something was wrong with them, but just couldn’t figure out why they felt so lousy. Then luckily, something clicked which lead to their celiac diagnosis. One mom told me it clicked for her after reading an article on celiac disease in Parents Magazine. “I brought the article into the doctor and asked to have [my son] tested for celiac. She gave me one of those ‘I’ll do it for the paranoid-because-she-read-an-article-mom’…” Sure enough it was that awareness and education that got her son the celiac diagnosis he needed.

Often it’s the bizarre range of symptoms that have people and doctors baffled by this disease and how it manifests itself. While my daughter had typical diarrhea and vomiting, someone else’s child at the same time may have had respiratory issues or hair loss. Go figure.

This last week, I set out to find out just how vast the range of symptoms is for celiacs. I conducted an unscientific survey asking parents and adult celiacs about their (or their child’s) top three symptoms of celiac disease before they were diagnosed.

In my unscientific poll, I had a total of 68 respondents: 45 children, 23 adults. They each listed their top three symptoms before being diagnosed with celiac disease. While it is a small sampling, I think the results are telling: confirming what we know – that celiac symptoms come in all forms: ranging from typical to possibly unheard-of by some.

Top Symptoms for Kids

There was a tie for the most common top symptom: 53% of children complained of diarrhea/loose stool and 53% had “failure to thrive” or growth issues before their diagnosis. Next was the tell-tale distended belly. 40% of children had that symptom. Remember most of these children had various combinations of symptoms which may help explain the numbers a little bit. 26% had stomach pain, 24% had vomiting, 20% had fatigue and 17% had constipation.

Now here’s the list of all the less-common, but for some kids, the most-prominent symptoms. It just shows how different we all are.

• Nausea
• Headaches
• Joint pain
• Anemia
• Skin dryness/blisters
• Brittle Hair/Hair Loss
• Depression
• Asthma
• Thyroid issues
• Throat tightness
• Respiratory issues
• Sinus trouble
• Low or altered immunity
• Down Syndrome
• Pale
• Gassy

What’s amazing is how quickly kids start feeling better after going on the gluten-free diet. Another parent mentioned during this survey how her daughter had “…unbelievable behavior problems, which I can only describe as so extremely irritable that she could not handle ANYthing. Also she could not sleep. She would be awake until midnight and awake [again] at 4:00 a.m. begging to get up. Within 2 weeks of the gluten-free diet she was a totally different child.” I say thank goodness!

Top Celiac Symptoms for Adults

For adults some of the symptoms can be different because many go for years without their diagnosis leading to further health problems. 23 adults responded to my request about their top three symptoms of celiac disease. The most-common top symptoms were also tied: fatigue and diarrhea each affected 47% of the adult respondents. Behind that was stomach pain at 26%, anemia at 21% as the most common problems adults had before diagnosis. Then -surprisingly to me – the next-highest symptom was no symptom at all! 13% listed themselves as asymptomatic. One person said her husband was only tested after their daughter was diagnosed, and his test came back positive, despite never feeling ill.

Here are the rest of the adult symptoms. They may not be the most common of all those polled, but again, they were considered the top symptoms for some people:

• Headache
• Vomiting
• Thyroid disease
• Depression/anxiety
• Acid Reflux
• Infertility
• Gassy
• Hungry
• Joint pain
• Overall poor health
• Racing heart
• Cell masses on thyroid & breast
• Osterpenia (thinning of bones)
• Spastic colon
• Irritability
• Dermatitis Herpetiformis
• Bruising
• Scoliosis
• Arthritis
• Osteoporosis

A Big Picture Look at the Symptoms of Celiac

There is another way to look at these numbers, by looking at each symptom each person listed and find out the percentages of occurrence. Surprisingly if you group together all of those “other” symptoms that some people may consider rare – the possibility of having a more-unusual symptom is higher than the typical diarrhea or fatigue.

So what does this all mean? I know I have shown a lot of numbers and not much personality in this post. My goal was to show how some of the atypical symptoms add up! Friends, family, neighbors, coworkers and especially doctors and nurses should take note.

One mom said her daughter had a bloated belly when she was really young; she said “…the doctor said was weak stomach muscles.” She added as her daughter got older other symptoms began happening, “During swim season, she would be fine one moment and doubled over in pain the next. They felt is was ‘senior stress’.” At 17 ½ she was finally diagnosed with celiac disease. If her doctor was more aware of the celiac symptoms would she have been diagnosed earlier? We can’t know for sure, but it is possible.

It is amazing to me how the gut plays such a huge role in the functionality of our entire body. Enjoy this little slice of celiac information, and pass it on. If this helps anyone figure out what is wrong with them even better!

Disclaimer: This study was conducted over 5 days via email, and the information was taken directly from respondents’ emails and tabulated. It is unscientific but gathered in the hopes of being informational.

Tags: celiac, diagnosis, gluten-free, list, poll, survey, top symptom