As a parent of a child with celiac disease, I am often asked how we knew that she had the disease. We didn’t. But we knew something “wasn’t right” and it was getting worse.
We suffered through 5 long months to get the diagnosis. We now know we were lucky to get answers so quickly — on average it takes years – 4 to 6 years — to finally learn celiac and gluten indigestion is the culprit.
Thus I thought it would be helpful to others to be able to review a list of the classic — as well as less common – signs of celiac in infants and toddlers. It is also important to realize that your child may have all, some or none of these signs/symptoms and might still have celiac! Looking back our daughter had some of these signs but until she stopped gaining weight, neither our doctor nor us thought there was a connection between them.
- Failure to thrive (i.e. child stops following their growth curve or otherwise is “small”)
- Vomiting and stomach pain
- Excessive Gas
- Bloated or distended stomach/belly
- Steatorrhea – fatty stools (undigested foods)
- Weight loss or weight gain
Less Common Signs
- Muscle wasting in arms, legs and buttock
- Lactose intolerance (or a wide range of other “allergies” to milk, corn, wheat, etc)
- Loss of energy or desire to engage (noticably less active than peers)
- Digression in behavior/learning
- Noticeable behavioral/personality changes
- Excessive mood swings or crabbiness
- Excessive stranger anxiety or clinginess to parent/primary care giver
- Refusal to eat foods that were once enjoyed – being an extremely picky eater even for a toddler
- ADD or ADHD (more typical in older children/adults)
Since this disease is believed to be as common as 1 in 133 people and the initial screen is now done with fairly straight forward blood tests, if you are concerned your child is sick or something is just not right with them — talk with your doctor immediately about the possibility of celiac. If your are not absolutely certain it is not what is affecting your child, insist on the blood test! If your doctor won’t do it, go to another one. It is not an expensive test and truly is a life changing diagnosis. Also, keep in mind celiac is NOT A WHEAT ALLERGY! It requires different tests.
Finally, remember that to get an accurate diagnosis (whether you decide to do only the blood test or a full endoscopy) your child must keep eating foods with gluten in them until after the test period. If you remove gluten before the tests, you likely will get a negative test. This is really tough if your child is sick but in the long run continuing gluten consumption in the short term helps ensure that you truly have figured out everything that is ailing your child.