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Tummy Trouble and Other Signs of Celiac Disease in Infants and Toddlers

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.

Classic Signs

  • Failure to thrive (i.e. child stops following their growth curve or otherwise is “small”)
  • Diarrhea
  • Vomiting and stomach pain
  • Excessive Gas
  • Bloated or distended stomach/belly
  • Steatorrhea – fatty stools (undigested foods)
  • Anemia
  • 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.

8 replies on “Tummy Trouble and Other Signs of Celiac Disease in Infants and Toddlers”

Hi,
I just wanted to leave a quick note to thank you for this post.

The way you describe your feeling that something just ‘wasn’t right’ is something I can totally relate to. We’re waiting on blood test results for our 32 month old son but the doctor has already said he doesn’t believe that gluten is the issue. He says my son is too chubby looking to have celiac! I’m not wishing it on him but something is up with him.

Did your daughter ever have problems with her nose? This is what alerted me to try cutting out the gluten because his nose would go tickerly whenever he ate.

Only time will tell but thanks for your blog and keep up the good work.

Merry Christmas!
Eleanor
@GiveABrick

This is some excellent information!

My daughter was 15 months old when she was diagnosed. We were one of the few lucky ones and she was diagnosed very quickly. She had a bacterial infection that caused her to have severe diarrhea. She stopped eating and regressed in her development very quickly. She was hospitalized and the bacterial infection was treated. She was no longer testing positive for the bacterial infection, yet her symptoms continued. That’s when the Dr. asked us if anyone in the family had Celiac Disease, we responded with what’s that?! So she was tested and sure enough it came back positive. They changed the formula in her feeding tube to a gluten free formula and she started to recover.

She has only ever responded to gluten with diarrhea, to our knowledge. She is now 3 1/2 years old and doing very well with her diet. In the last couple of months though she has had episodes of vomiting without a fever and crying because her stomach hurts. So now I’m wondering if these episodes are from getting gluten, or if they are just normal stomach bugs.

I’d be interested in knowing whether other Celiac Disease patients experience changes in symptoms when exposed to gluten.

Elizabeth

I am starting to wonder if this is what’s wrong with my son. He is 15 months and has had diarrhea and sever like 6 to 8 times a day since Dec 24, 2009 and it’s now Jan 22, 2010 last week he went 45 times in a week. They had did different stool samples and a meckel scan and it has all came back neg. I’m just worried that he is not getting the proper nutrition he needs because he goes so much in a day and it’s all loose stool. We have started florastor this week to see if it will help him and one day it made his stool have more form but now it’s back to diarrhea. I’m just torn on what to do if u should have him see a gastric doc that deals with kind of things with children. He is my 3rd child and I know this is just not normal or teething since it’s been going on so long. Any input would be great!! Thanks have a good day.

Great article, I drop by often to check the updates and comments.

am a mother to two girls, but i have been concern about my 25months old one. she always have loose stool never puts on weight she is so small at her age she still fits into a 6 to 9months tops she been tested for celiec but came out she has not got the disease i wonder if gluten intolence can cause that

Whenever i have diarrhea, i just take some Diatabs or Imodium tablets and it gives me some relief after a few minutes…~

i also have lactose intolerance that is why i always avoid dairy products.’-~

well we do have some lactose intolerance in our family and we just cut out on dairy products. “:.

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