National Foundation for Celiac Awareness


What if you suspect you have celiac disease?

A celiac disease diagnosis - unlike other diseases - does NOT have to start with your physician's suspicions. If YOU think this increasingly common autoimmune disease could explain your own physical concerns, here's what to do:
 
a) Make an appointment with your primary care physician for bloodwork.  Mention that 1 out of 133 Americans likely have celiac disease, which is about FORTY times higher than previously believed in the USA.
 
b) The specific antibody tests you'll need should include: anti-endomysial antibody (lgA EMA) and anti-gliadin antibody (lgA & IgG), and tissue transglutaminase (tTG IgA). These tests are very sensitive and specific for celiac disease.
 
c) If the results of the antibody test(s) are positive, or your doctor suspects celiac disease, you should next see a gastroenterologist to undergo a small intestine tissue biopsy (endoscopy). A biopsy showing damaged villi in the small intestine is the first half of the 'Gold Standard' to diagnosing CD. The second half of the 'Gold Standard' is improvement of health with the gluten-free diet.

d) Be aware that the top 5 misdiagnoses for overlooked celiac disease are:
   
1. Anemia
2. IBS
3. Psychological stress, nerves, imagination
4. Diarrhea
5. IBD
 
e) Symptoms can include any of the following:

recurring abdominal bloating and pain
chronic diarrhea OR constipation
weight loss
pale, foul-smelling stool
unexplained anemia
bone pain
behavioral changes
muscle cramps
extreme fatigue
delayed growth
pain in the joints
seizures
tingling numbness in the legs (from nerve damage)
pale sores inside the mouth, called aphthus ulcers
painful skin rash, called dermatitis herpetiformis
tooth discoloration or loss of enamel 
 
 f) It is also possible to have NO symptoms- but still have undiagnosed celiac disease - especially if other family members have celiac disease or other autoimmune conditions such as hypothyroidism, type 1 diabetes, lupus, rheumatoid arthritis, etc.