The #1 Reason Your Baby May Not Have Colic
It’s a common, and frustrating, scenario: Your baby is fussy and irritable, crying for hours, quieting down for a while and starting up again. And there’s nothing you can do to console the little one.
“Colic” springs to mind.
To confirm your diagnosis, you go to Dr. Google and look up “baby, cranky, fussy, gas, bloating and (of course) colic.”
Unfortunately, colic has become a catchall, a word that covers a wide variety of symptoms, beyond the symptoms of colic, itself. This is the main reason why parents often think it’s colic if their baby is irritable, just won’t settle down, and has these very common symptoms.
But what if it’s actually something else? Something so rare that even doctors may miss it? And something that could harm the growth and development of a baby or toddler who hasn’t been diagnosed accurately and treated appropriately?
No need to be scared, just prepared. Read on so you know how to make sure your child gets the care needed.
Why It’s Hard to Get the Right Diagnosis
Not only are you likely assuming that you have an infant with colic, your doctor might think that, too.
That’s because they may mistake some of the signs of Sucrose Intolerance caused by the rare disease Congenital Sucrase-Isomaltase Deficiency (CSID) for colic because some of the symptoms are the same.
These copycat symptoms can also indicate other, better-known stomach conditions that your doctor will consider if they don’t think it’s colic, such as lactose intolerance or milk allergies, irritable bowel syndrome (commonly referred to as IBS), celiac disease, or not a disease at all, but instead an infection from contaminated food.
But CSID (informally called Sugar Intolerance, or Sucrose Intolerance because sucrose is a type of sugar) happens because your child can’t digest certain sugars and starches — and none of those other diseases affect your child’s body the same way.
Only a doctor can diagnose Sugar Intolerance, so head to your trusted pediatrician, at least to start. Ask about testing for Sugar Intolerance, to be sure you get an accurate diagnosis quickly instead of possibly delaying your baby’s relief by treating another condition first.
You can also see a specialist called a pediatric gastroenterologist (GI doctor). This doctor sees more cases of Sucrose Intolerance in children than other doctors, who may not see enough patients to recognize the signs.
“The baby’s general pediatrician can do a thorough history and physical examination to see if there are any ‘red flags’ or alarm symptoms that suggest [a condition] other than infant colic,” says Adrian Miranda, MD, a board-certified pediatric gastroenterologist (GI) at Children’s Hospital of Wisconsin and Professor of Pediatrics at the Medical College of Wisconsin.
Why You Might Be Told You’re a Colic Parent
Doctors typically look for colic, because it may affect anywhere from 10 to 40 percent of babies worldwide.1 According to Dr. Miranda, doctors suspect colic if your child:
- Is younger than five months when the symptoms start
- Shows frequent and prolonged periods of crying, fussing, or irritability without an obvious cause that can’t be prevented or soothed
- Shows no evidence of “failure to thrive” (difficulty gaining weight and getting proper nutrition, for example), fever, or other illness
- Is overly sensitive to the environment
- Has problems with digestion, resulting in excess gas
- Has sensitivities to foods in their mother’s diet for breastfed babies or allergies to milk protein for formula-fed babies
- Has a mother who smoked before or during pregnancy
Why You Might Not Be a Colic Parent
Even if you suspect that your child may be colicky, there are some important signs that you and your child’s doctor should watch for, since these may indicate a completely different stomach condition, such as Sugar Intolerance.
“All babies should be followed by the pediatrician, with scheduled visits every two months, in order to monitor growth and development and assess for ‘red flags,’” Dr. Miranda says.
“The symptoms to be concerned about include poor weight gain or diarrhea, which suggest a problem with malabsorption.” (That’s doc-speak for your child’s not getting all the important vitamins and minerals and calories they need.)
The symptoms of CSID that your child’s doctor should look for include:
- Chronic watery or acidic diarrhea (chronic means that it happens again and again)
- Abdominal (stomach) pain or cramping
- Diaper rash (irritation that won’t go away)
More Differences Between Colic and CSID
Sugar Intolerance shows up when certain types of sugar and starches (starches are a large group of sugars) are introduced when you switch from breastfeeding to formula or feeding your baby solid foods such as fruits, vegetables, cereals, and juices. Your baby’s inability to digest sucrose is the reason symptoms tend to appear more around mealtimes.
Some children also show symptoms of CSID when they become ill and take their first antibiotic or other medication, which may contain sucrose or starch.
One other important difference between CSID and colic is that there are no tests to definitely diagnose colic. All doctors can do is look at the pattern of your infant or toddler’s symptoms and rule out other conditions.
How Doctors Can Test for Sucrose Intolerance
Unlike colic, Sugar Intolerance can be tested to know for sure if your child has it. Here are the ways doctors can test for and diagnose CSID:
- Endoscopy. An endoscopy was the way most doctors tested for CSID until newer diagnostic tests came along. It is an invasive procedure, meaning your child has to be put to sleep in order to have a tube placed down her throat to get a sample of tissue (called a biopsy) from the gut to examine.
- Genetic test. While a genetic test is not invasive or painful, it’s not often done because it’s costly. Your doctor swabs the inside of your child’s check to get a gene sample (commonly called DNA) and tests for damaged genes that may point to CSID.
- Breath tests. Breath tests are especially helpful for diagnosing CSID. Two painless, non-invasive breath tests are now available. With either test, your child just has to drink water with a sugar solution in it and then breathe into a series of special test tubes for around 90 minutes. The doctor sends these test tubes to a lab to measure the types of gas that are present in the breath, which indicate whether or not the child is able to digest sugar. Note: This type of testing can also be done easily and comfortably at home, so talk to your doctor about this option. While taking the test, individuals who have Sucrose Intolerance may experience unpleasant gastrointestinal (GI) symptoms due to the large amount of sucrose consumed during the test.
Delaying CSID Treatment at This Age Is Dangerous
Another one of the main differences between colic and CSID is that infants normally outgrow colic before they’re 5-months-old, while CSID must be treated for life.
If, for whatever reason, you have been under the impression that you may be dealing with colic and your kid’s chronic diarrhea, seriously stubborn diaper rash, and other symptoms haven’t stopped by the time she reaches this age, it’s time to find out, for sure, whether Sugar Intolerance is the real culprit.
CSID makes it difficult for a child to digest and absorb all the nutrients they need, which is called malnutrition. For infants and toddlers, malnutrition could result in lifelong problems because it can affect their growth and development.
Treatment is a combination of adjusting what your child eats and drug therapy. Your healthcare team – your pediatrician or pediatric GI doctor, along with a registered dietitian (RD) who specializes in eating for specific health conditions – can provide the support you’ll need.
Here’s What You Can Do Right Now
Because many medical professionals aren’t familiar with Sugar Intolerance, you might need to see more than one doctor to get one to do the testing needed to get the right diagnosis.
You can find a specialist who will be most knowledgeable about this rare disease through advocacy organizations or articles published in medical journals that you can find online.
You may also want to contact a university hospital or medical center in your area, because they tend to see more complex cases and have the latest technology and treatments.
If you can’t find a specialist near you, try contacting national or international specialists. They may be able to refer you to someone they know who is in your area. Some specialists may even be willing to consult with you or your local doctors over the phone or by email if you can’t travel to them for care.
It’s incredibly important that you be an advocate for your infant or toddler. That starts with doing the homework to be informed, and therefore effective, to make sure your child gets the care needed.
Keep a record of your child’s symptoms and when they occur. Make note of when they eat, what they eat, when they have bowel movements — especially if they have explosive or chronic, stinky diarrhea or constipation. Plus, keep track of the fussiness, irritability, and other symptoms mentioned earlier. Take this information and a list of questions with you to your next doctor’s appointment.
The more prepared you are, the more helpful it is for your doctor to come up with a plan for testing and treatment to get your infant or toddler on a fast track to good health.
Some of the individuals mentioned on this website are paid consultants of QOL Medical.
- Johnson JD, Cocker K, Chang E. Infantile Colic: Recognition and Treatment. Am Fam Physician. 2015;92(7):577-82. www.aafp.org/afp/2015/1001/afp20151001p577.pdf