Celiac Mama's Blog

Raising a toddler with Celiac Disease

Symptoms of Celiac Disease in a Toddler April 4, 2011

Filed under: symptoms — celiacmama @ 11:55 pm
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My daughter was diagnosed with Celiac Disease about 13 months ago, when she was almost one year old.  Looking back, I don’t know how our first pediatrician didn’t pick up on the signs.  She was clearly very, very sick.  Thankfully the mama bear in me came out and we switched pediatricians in order to figure out what was wrong with my baby girl!  The symptoms definitely attributed to Celiac Disease are/were the following:

  • Big drop on the growth percentiles chart – My little girl stopped growing.  She went from the 70th percentile for weight down to the 10th percentile for weight.  She lost all her chubbiness and started looking quite gaunt.
  • Anemia
  • Elevated alkaline phosphatase levels
  • Constipation – Before learning more about celiac disease, I thought all sufferers had diarrhea.  Now I know that constipation can be a sign as well!
  • Fatigue – My poor baby girl slept all the time.  I brought it up at an appointment with her pediatrician and he said I should just consider myself lucky.  Take note – children are not supposed to sleep for 20 hours a day when they are nearing one year old!
  • Edema – my little girl had swelling around her lungs.  This caused her to have asthma-like symptoms, which included a chronic cough and wheezing.   Thankfully she doesn’t have asthma (she did great this past winter), but we had to use a nebulizer quite a bit right before and after she was diagnosed.

She also had other symptoms, that I can’t definitely say Celiac Disease is the cause of.  These symptoms are:

  • Delayed speech and gross motor skills.  Her new pediatrician hypothesizes that this is due to her focusing on trying to survive rather than learning how to talk and crawl/walk.
  • Fractures – she has fractured her legs twice now.  She is only two and has only been walking since about 20 months!
  • Delay in getting teeth, growing hair – this is just speculation, but my baby girl didn’t get teeth forever!  And, she had very little hair until after getting on a gluten free diet.

So, those are what I can think of at this point!  I’ll add more as I find out more or think of them.  What symptoms have your children had?

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8 Responses to “Symptoms of Celiac Disease in a Toddler”

  1. I was just recently diagnosed with Celiac’s diease. I’ve been having very severe stomach pains and lots of other pain in my abdominal area for a long time. I was online surfing and came across this site, which really provided me with some helpful information. I just wanted to say thank you. I’ve been on a disciplined gluten free diet now for 5 months and I have been feeling great. I have also been attending some gluten free parties and have made a new group of friends by visiting one of the local health food stores. The food isn’t cheap so I always keep my eye out for deals or search online for the best prices. Anyway, thanks again for all the info. I just put this in my favorites.

  2. Mackenzie Says:

    How was your daughter diagnosed? I read that many infants can give test negative with blood tests. I have 16 mo. old fraternal twins. My son has been sick since January- rsv that left him with asthma, just got ear tubes, c diff. He has so many of the celiac symptoms that he just had a blood test for it today. He is only 21 lbs. and has lost weight since Jan, he is just starting to try to walk and he only babbles.
    Thank you!

  3. Mackenzie Says:

    Oops forgot to add….He also is anemic, bloated tummy and he is either constipated or having diarrhea. I am praying his blood test gives us an answer so we can get him healthy again.

    • celiacmama Says:

      This sounds incredibly familiar! My daughter was diagnosed with five blood tests, although I don’t remember what they were right now. We did not do the biopsy because I didn’t want to put her though that. I can look up the blood tests if you would like to know, but they were just the standard ones to test for celiac disease. And, her ped did tell me that a lot of children under 3 do not test positive, but our daughter did get positive results. And, he recommended going gluten free immediately after the testing just to see how she did in case the results came back negative. It took a while to get the results (they sent the blood to Mayo Clinic), so he didn’t see any reason to wait for the results. They have to have gluten in their diets to get a positive test, so don’t cut out gluten before getting tested! Let me know if you have any other questions. It can be overwhelming at first!

  4. Mackenzie Says:

    Thank you! We met with a GI nurse practitioner today and she thinks he has IBS and severe reflux. She recommended trying him on a fiber diet for a month and then we go back. I can’t seem to find any info on toddlers having IBS only preteens. She said we could test him again for celiac around 2 and see if anything shows up. He is hispanic and was adopted so the family history is unknown. The np said she wouldn’t think it was celiac because its not a popular disease in that nationality. I told her I think I will remove gluten to see if it helps. I just want to do what is best for him. Thank you for listening to me. Do you have any books you would recommend?

  5. Gizzelle Rojas Boccia Says:

    Hi all. My almost three year old may have celiac. He was growing fine up to five months of age when he started to drop off percentiles and he looked so skinny. Back then I did not even think about celiac. He is in the fifth percentile for weight and has global delays in his development. Overall he seems weak and low tone. I took him to a ped. GI and she said just add full fat foods to his diet; I did and no improvement. Then I took him to his pediatrician who said “No, not to worry, he has just been following his growth chart now steadily… 5th percentile. He eats a ton of food and does not gain weight. His poops are significant and sometimes are kind of on the loose side. His limbs are super thin. I am mad that they don’t want to do the blood tests. Please please give me some advice.

    • celiacmama Says:

      I think I would find a new pediatrician who will listen! Our old pediatrician blew me off and I found a new one that acknowledged something was wrong with my daughter. I hope you are able to get some answers soon. Seriously, look for a new doctor. You might do a search for people in the area who are familiar with celiac disease or failure to thrive. I’m sorry you are going through this!

  6. Amy Says:

    It’s not always so obvious, and general pediatricians often overlook things. My daughter is very tall, but her iron level was low. Her ped. didn’t look into it any further. Even after a year of complaining about stomache pains the doctor didn’t have answers. My advice is if you suspect something and don’t need an insurance referral, head straight to a gastoenterologist. If you need a referral and your ped. is reluctant, be pushy. My daughter was diagnosed at 4 1/2 and I have no idea how many years she suffered w/ celiac before that.


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