Do Babies With Celiac Act Sick?

[angjess]

My daughter just had her 9-month check up and we found out the she is anemic and also dropped significantly in percentiles (from 90% for height down to 10% and 50% for weight down to 5%). She is a mostly happy baby and she has met all of her developmental milestones (and is even ahead on many). She has always nursed frequently and at 6 months started solids in addition to BFing.

I'm concerned it may be Celiac because of both the anemia and the significant drop - particularly considering this drop must have coincided with when she started solids (since she was still so high at her 6-month visit). In reading the symptoms, I think there is a strong possibility I might have it and I will be getting tested next week. We tried to get a blood test for her last week, but they couldn't get a sample out of either arm and I'd rather wait to get my results before trying again.

Anyway, I'm just wondering if it is possible she would have Celiac but still be mostly happy? She's always been a very fussy baby when not being held, but is generally quite happy as long as you give her what she wants, lol. She was more or less colicky as a newborn and was diagnosed with reflux as a newborn, but I don't recall any other symptoms of stomach upset or overly bad BMs (plus she obviously hadn't had any gluten as a newborn unless it is passed through breastmilk).

Do you know something is wrong when it is Celiac in a baby??

Thanks in advance for your responses!!

[Fiddle-Faddle]

I can't answer your main question, but if your daughter does have celiac, then it is vital for you to stop eating gluten and possibly casein ASAP if you are nursing her.

The problem, though, is that this will screw up any test results for you, since you muct be eating gluten for the tests to be accurate. However, since it has been proven that gluten you eat will be in any milk you produce, you need to stop eating it if that's your daughter's problem.

Now, the doctors will want to order lots of tests--bloodwork, endoscopy, biopsy. But IF gluten is the big problem for either of you, then diet is, if anything, a better indicator than any expensive, invasive test they can run, and you don't need a doctor's permission, and you don't need to wait another day. And every day you wait is another day of gluten damaging your daughter's intestines. Besides, the doctors will probably try to get you to stop breastfeeding, claiming that that is what is causing your daughter's lack of growth. (Been there!)

On the other hand, if gluten is not the problem, you'll have to start back at square one.

[angjess]

Thank you so much for your response!

This is exactly my frustration. Our doc has said to supplement with formula and up her calories and then reweigh her in 4 weeks. I feel like this makes no sense. She nurses (and always has) pretty much every two hours and eats baby food - it seems so counter-intuitive that she would not be getting enough calories to grow on her normal diet. I have no reason to think my milk is down, as I always have some when I try to express (but I started Mother's Milk tea just in case) and I nursed my first daughter for her entire first year with no issue. I feel like she would seem tired or sluggish if she were getting so few calories that she couldn't even grow - plus I know I'm feeding her! And four weeks seems like forever to wait, considering three months have already gone by without our knowing she was dropping!

She was VERY fussy at birth - literally the second night in the hospital she screamed the entire night. She was inconsolable the first few weeks - she always seemed like she was balling up with gas. We thought it was colic, but they said that doesn't start that early. They said she had silent reflux (which made sense, since my oldest daughter had projectile vomiting with reflux) but the Zantac never helped. She eventually began to calm down some and is now mostly happy (although she often gets irritable if I don't hold her most of the day). I hadn't thought anything of it, since she never "seems sick" and is meeting/exceeding all of her developmental milestones. I was floored to find out about the drop, as I had no indication she wasn't growing as she should.

The doc has suggested a very high carb diet, which includes lots of gluten. DH wants to "follow the doctor's orders," but I just can't make sense of it. Even if she does gain weight, that doesn't explain why she dropped in the first place.

Sorry for the rambling. I'm just so overwhelmed by the news of her drop and don't want to waste even another day trying to figure out what is going on. I want to go off gluten just in case, but I don't want to mess up any test results. Plus, since "failure to thrive" is the biggest indicator I have right now, I don't think I'll see any immediate results of her going off gluten.

[ptkds]

Yes, she can be happy and still have celiac. She could be a silent celiac, which means she really has no outward symptoms, but she isn't absorbing enough nutrients to grow properly.

She is also very young and testing in children that young is not very accurate. You would probably be better off just testing yourself and putting her on the gluten-free diet.

Good luck! I would type more, but I think I have a broken pinky, and typing is pretty hard!

[angjess]

Yes, she can be happy and still have celiac. She could be a silent celiac, which means she really has no outward symptoms, but she isn't absorbing enough nutrients to grow properly.

She is also very young and testing in children that young is not very accurate. You would probably be better off just testing yourself and putting her on the gluten-free diet.

Good luck! I would type more, but I think I have a broken pinky, and typing is pretty hard!

Ouch - I hope that heals soon!!

Thank you for your response! I just wasn't sure if she would be acting sick or tired if she did have Celiac. Aside from being clingy, she tends to be a pretty happy baby.

[B'sgirl]

My son was happy most of the time. His symptoms were mainly that he had trouble sleeping, he dropped in weight after starting solids like your child did, and he would get diaper rashes every so often that no ointment could heal. Later I associated those rashes with eating whole wheat. Also, if your child's bowel movements are excessive, or if they ever look like they have sand in them that is a pretty good sign that there is a food-absorption problem and intestinal damage.

As for following the doctor's orders--most pediatricians and family practitioners go by generalities and don't specialize. I can't find a doctor in my county that knows much about celiac at all (it's very frustrating). I had to rely solely on diet change (my son's blood test for Celiac came up negative) and my own research. I still don't have an official diagnosis from a doctor for my son, but to get one I would have to purposely cause intestinal damage so that the biopsy would show positive results. It's such a crucial growing time that I don't think that's a very good idea at the moment.

[CeliacAlli]

I have a severe case of celiac and I was very sick. I am now 13 and perfectly healthy but at 12 months old I weighed 12 pounds, as I am sure you realize this is not healthy. My stomach blew up and looked like I was a pregnant baby, and I was puking up ALL the time! Hope this helps to answer your questions!

[betsyabailey]

Hi! I figured out my son had celiac disease while he was breastfeeding. He was a totally happy kid untill he had to poop. But it seems he's the exception not the rule. If you want to know if it's celiac cut out the gluten. It's hard to figure out at first, but there's great books out there and this is a great resource. My son still hasn't had his blood test but two challanges later he can't eat gluten. He'll be 2 in December. I suggest switching your baby before they know the difference. I'm sure it's easier to stick to the diet if they never know what "real" food tastes like. Good luck!

Betsy