For Those Who Had Babies Diagnosed With Celiac's....help!

[marybeth1583]

My 10 month old baby girl has been losing weight since she was 5 months old. She'll lose quite a bit, then gain a little, then lose again, off and on. After four straight months of weight loss, I finally got a referral to go see a pediatric GI specialist at Boston Children's Hospital. The doctor hasn't run any tests on her yet, but decided to take a first step on trying her on acid blockers for a couple of weeks because it is the least evasive first step to take.

Obviously I have been worried about my little goober for months now. A few weeks ago I came across a page about celiac's, and she seems to match a few of the symptoms. We had NO trouble with her weight or her eating habits until she started solid foods. She ate her cereal and her first foods very well for a month or two, and then all of the sudden she didn't seem interested in food anymore. She doesn't even nurse well anymore and won't even take a bottle of formula. My husband is deployed to Afghanistan, so this entire thing has been very stressful. The only thing that comforts me is that she is very active and is meeting all of her developmental milestones. But, again, it's not unusual for her to lose 1/2 pound in a couple of weeks. She's currently 16 lbs 4 oz and in the 4th percentile for weight.

So, if you had a baby diagnosed with celiac's, what symptoms did they experience? What did you notice about their habits? I don't know a lot about the disease, so any insight you could give to me would be appreciated!

[MySuicidalTurtle]

My brother and I were not diagnosed as infants but we did show signs. My Mother took us to doctors often but they never tested for Celiac Disease until we were teens. So, I can only tell you what are particular symptoms were but babies with Celiac Disease can experience a wide variety of symptoms.

I had diarrhea when switched to formula, so, the doctors told my Mom to use this special soy formula instead and I was fine. As I got older the diarrhea returned and lasted everyday until I was diagnosed at 17.

My brother had projectile vomiting as an infant for months and months. He had mood swings, constant screaming, and acid reflux on and off until he was diagnosed as a teenager.

Good luck to you and your baby girl!

[elle's mom]

My daughter was diagnosed with celiac when she was about two and a half. Little did we know before that she had been showing symptoms since the day she was born. She was "colicky", and it never went away. She was very irritable (they told me this was just her "temperament")-tantrums, difficult feeding etc. She would refuse a bottle (although she WOULD breastfeed); for example, while I was at work I'd leave three four oz. bottles for her-poor hubby would dance a jig trying to get her to eat, I'd get home and she'd only have drank maybe 2 oz all Day! Luckily I only worked part time. We had no idea this "refusal" could be anything other than stubborness, but it is. By the time she was around 18 months her little tummy was bulgy, hubby commented on it looking strange, I just said don't make fun of her! Lots of trouble trying to potty train......she was actually constipated. She would not poop until she fell asleep then she would wake up crying about it. She slowly went down on the growth curve.

When she was a baby baby (before starting solids) her poop was liquid, more than regular breastfed poop, like watery and would run out while changing diapers, causing lots of messes. It always ran out the leg of her diapers. We had no idea any of this could be a DISEASE! I remember when she was only a few weeks old her poop suddenly was a BRIGHT green color (like shamrock); we told the ped at a well-visit (even though she wasn't well) and she dismissed it. At the same time we were complaining of her crying all the time. It still makes me so mad when I think about it.

She had happy times too, and honestly I still look back and think about how "normal" she seemed, or we wanted her to seem. She was always smiling for pictures, her first word was actually "cheese"! She did meet all her milestones too. Not that I'm saying yours has celiac, but just not to dismiss it easily. You have the benefit of knowing that it exists, which we did not. Good luck to you & please thank your husband for his service. Poor you though for not having support during all this. If you have any more specific questions feel free to send me a PM.

[Avery'sMommy]

I could have typed your post myself! It's amazing how similar our situations are.

My DD, who is also 10 months old, has been losing weight since 6 months old and is now below the 5th percentile. She was diagnosed FTT and we start our round of specialist appointments next week (beginning with GI and then a sweat test later that afternoon). Cystic Fibrosis is in my family however I tested negative in the gene carrier test.

My daughter eats but doesn't gain weight at all. Her poops are really, really stinky (like clear a room stinky) and go between loose to formed. There's no consistency to them it seems.

She saw an allergist last week who said she could have a milk allergy so he put her on a special Rx only formula and strict no dairy/no soy diet (which is hard when her older brother leaves his milk and snacks laying around constantly). I really don't think it's a milk allergy but I'm going with it and giving it a shot. Whole Foods has become my home away from home.

DD is also hitting all her milestones which is a relief. She's currently 15 pounds, 7 ounces. But it's driving me crazy not knowing why she can't gain weight. We haven't been able to get out of the 15 pound range for months!

If you get any other info, please let me know! I'll keep you and your DD in my thoughts!

[kaleesmom]

Avery's Mommy:

I totally understand your stress. My daughter's symptoms started at about 6 or 7 months of age when she started solid foods (cheerios and those toddler biscuits, all of which contain wheat). She presented with severe constipation. We had several visits to the pediatricians as she was not able to pass her own stool (we had to literally pull it out of her). It wasn't until her 1 year visit that we were referred to a gastroenterologist when we noticed her belly becoming distended and she fell way off of the weight curve. As a baby, she was always right at 50%. At 1 year she was around 20%, right before her diagnosis, she was at about 5%.

Our first GI doctor tried to convince us it was a functional problem she would just grow out of and in the meantime, we should keep her on stool softeners. He had tested her blood for celiac, but her blood test was negative. Then, at about 18 months of age, her poop became white and she started vomiting. That eventually happened several times daily. She became too weak to walk and was no longer sleeping through the night, waking up 5-6 times crying or vomiting. We tried to find another GI doc, but I couldn't find one who had an appt within 6 months, and we didn't feel like our daughter would make it another 6 months. It took a threat from my husband to our pediatrician to finally get help. We were able to get an appt with another GI located about 2 hours away. He took one look at the shape of her body (huge belly with skinny arms and legs) and said it looked just like celiac. One week later, we had our endoscopy and our diagnosis. She is now a normal, energetic 2 yr old 1 yr after her diagnosis.

[Avery'sMommy]

So the blood test can come back negative and they still have celiac disease?

Getting to the point your daughter did (vomiting, etc.) scares the crap out of me.