Celiac disease used to be commonly thought of as a disease of diarrhea and malnutrition with undiagnosed patients being exceptionally lean. However, that picture has changed.
A 2006 article talks about a few extra intestinal manifestations of celiac disease as iron-deficiency anemia, osteoporosis, dermatitis herpetiformis, arthritis, peripheral neuropathy, and ataxia. Ataxia is an indication of nervous system malfunction including difficulty walking and speech changes.
In 2017 another article talks about abnormal liver enzymes, arthralgia/arthritis, dermatitis herpetiformis, alopecia, fatigue, headache, anemia, stomatitis, myalgias, psychiatric disorders, rashes, seizures, neuropathy, short stature, delayed puberty, osteoporosis, and infertility as potential indicators of celiac disease in both adults and children.
In 2020, another article describes extra intestinal manifestations of celiac disease as, “Any organ may be involved, either through an immune / inflammatory phenomenon, or nutritional deficiencies.”
That doctors are realizing that just about anything can cause celiac disease is both detrimental and a benefit to the detection of celiac in patients. It’s kind of like when your teachers used you give you an assignment saying, turn in a 5 page essay on a topic of your choice tomorrow. With no guidance and no definitive parameters or red flags to potentially indicate celiac disease, doctors can explain away most symptoms with another diagnosis.
Explaining away symptoms with other diagnosis is why it takes, on average, 10 years for a celiac patient to get diagnosed. A ten year diagnosis timeline causes a patient to have potentially undergone a variety of other treatments and spent extra money that never actually got to the root cause of the problem.
On the down side, one might see one doctor for one symptom, another symptom a different doctor, and even another for another symptom without anyone looking at the whole picture. A full picture from a single point of contact might make celiac symptoms more obvious.
On the plus side, simple screening blood tests are inexpensive and accurate. Are blood tests 100% accurate, no. But I always tell people that they don’t just do one test to determine if someone has cancer, doctors do multiple tests over time to ensure proper diagnosis. Same with celiac disease, multiple blood tests and biopsy are required for a proper diagnosis.
All of this to say that celiac disease is complex. It is challenging for doctors to hear the clues in the 15 minute appointments they have with patients talking about all of their symptoms. The burden is on patients to advocate more vociferously in appointments for themselves. But once the testing is complete, patients have to be confident in the information they are told – celiac or not.
Anyway, all this to say, the prevailing thoughts about symptoms in celiac disease have changed, which is both a blessing and a curse.