Baby's Weight

[SharonF]

I came down with symptoms, and was diagnosed with celiac, when my now 1-year-old was 4 months old.

I'm getting worried about her, now.

I kept her off glutens for a year, and am still breastfeeding while introducting glutens, so I'm trying to avoid her getting celiac as well.

She is thriving, and walking, and doing all sorts of things babies her age should do--except gain weight. She went from 8lb 11 oz at birth, to 90th percentile at 2 months, to 50th percentile at 6 months, to 20th percentile at 9 months, to less than 5th percentile at 12 months. Now we're keeping a food diary, trying to load her up with food, and having to keep taking her to the doctor every 6 weeks for weight checks.

Is it possible that she has celiac if her only symptom is slow weight gain?

Oh, and the doctor knows I have celiac, but for some reason doesn't think we need to test the baby yet.

[Guest taweavmo3]

I would definately be concerned that your daughter may have Celiac. From what I was told, as long as the weight gain is consistantly in a particular percentile, than it's okay. Whenever, at any time, a baby starts falling off the growth charts, that should be a red flag.

Our last ped wasn't concerned that Emmie dropped from the 60%, to less than 5%. He would take a quick look at her and say "well, she isn't wasting away. She's just going to be small like you." Meanwhile, I was trying to explain how the clothes she was wearing were from LAST year, and they were loose. Something just wasn't right. Luckily, I work at a children's hospital, and talked to a doctor about her. He clarified that the drop in weight gain is a definate red flag, and gave me the analogy "she doesn't have to be broken in order to try and fix her" Meaning any red flag such as drop in weight gain should be investigated further, not waiting until she is seriously behind in everything, or seriously ill.

After talking to the doctor at work, I just took Emmie to a pedi GI myself, without a referral. Luckily we didn't need one with our insurance. I felt like I was being a little sneaky, but the GI saw signs of celiac right away, and we had our diagnoses two weeks later. I never would have gotten anywhere with our ped, even though Emmie was a classic celiac. She had almost every symptom there is. So she would not have been one of the hard to diagnose cases. We now have a new pediatritian!

Although, I have to say that even this new ped is hesistant to test my 6 year old for celiac. He doesn't have any gastro symptoms or weight gain issues.....his only problem is a rash on his elbows and knees. It fits the description of DH, but since it is supposedly rare in children, he is still thinking it is excema or psoriasis. None of the creams are working so far, so maybe I'll get the blood test eventually.

Anyway, my point is to just be persistant. I think there are alot of doctors who are still behind the times when it comes to celiac, and need a little push to do the tests. It's just simple bloodwork, and he should be pursuing reasons as to why your daughter isn't gaining any weight....that is not normal.

[CMWeaver]

I have twins who are 4 now. One of them was showing traditional symptoms (no weight gain, dark circles under her eyes, no energy and more neurological symptoms). The other wasn't failing to thrive but the same little girl who had quadrupled her weight in the first year was gaining hardly at all. Initially, it was blamed on her high activity levels.

Long story short, her bloodwork indeed was positive. We were shocked!

I agree with the other post, I was told that as long as they are growing along the same percentile (or pretty close to it), there isn't much cause for alarm. I'd go with your gut on this one!

[Guest ajlauer]

As long as they remain in the same percentile AND that the weight and height percentiles are similar.... that's what I have been told. My 4 yr old is the size of a 2 yr old. She's in the 25th pctl for height, and in the 2nd pctl for weight. They're running a whole serious of tests on her now (blood, urine, and stool) to see what's up. The good thing is, her peds are competent enough to run all the test at once - so they only have to draw blood one time. I would HIGHLY recommend that! They are checking for celiac disease, cystic fibrosis, and "other things" that might cause weight loss (or lack of gain). As for my 1 yr old... I was told that we should wait until she is 2 to test her. She really isn't showing symptoms - she's almost as big as her sister. So I was fine with not having to poke her at such an early age. But definately, if you are concerned - that's reason enough to start testing!! Like someone said earlier, dont' wait til they're broken to try and fix them!! From my experience, I would personally suggest testing for celiac disease, food (and seasonal) allergies, cystic fibrosis - and whatever else your pedi suggests, all at once.

[weigesm]

Hi,

My son was tested 3 weeks ago by a GI specialist as well. He is also meeting all of his milestones, and his growth for the first 5 or 6 months was great; however, since then his growth has been on the decline. He has gone from the 25% to just off the charts.

His first symptom (besides weight) was vomiting after all infant cereals (Gerber). He also vomited after a few fruits, but otherwise has kept everything down, even bread and crackers. We go back to the GI in two weeks for a weight check. Hopefully he has grown some. I keep giving him anything he tolerates (including bread) hoping that if he does need another test, he will be more likely to get definitive results. for a month before he last test, he had only received gluten through my breastmilk, which is still debatable anyway (do babies react to gluten in breastmilk if the mother herself is a celiac ?. . I'm leaning to the side that says "no")

His blood tests for celiac came back negative, but GI doc says he has Selective IgA deficiency, which is related to celiac. So, if he doesn't gain enough this time to put him back on the charts, she is going to recommend a biopsy. His syptoms are poor growth, occassional vomiting, and loose stool.

Unlike you, there is no family history (at least no diagnosis, although some family health issues that I know of have made me suspicious) of celiac that we are aware of, but I am small and fairly thin, so I am considering getting tested myself before I put him through a biopsy. Since you have tested positive, I would definitely push your doctor to test your baby. If you suspect it even a little bit, the earlier you find out, the better.

Were you tested through your internist or did you take testing into your own hands through a home test?

I don't have an internist at the moment, just a GYN, and I am a new patient at that, so I'm not quite sure how to handle getting tested myself.

I hope things improve for you and that you get some answers soon,

Susie

a newbie

[Merika]

Check out www.kellymom.com for a height/weight chart for *breastfed* kids. The chart at your doc's office is for formula fed kids. It is common for breastfed babies to start and the high end of the chart and drop towards the bottom near one year.

Ignoring the charts, how does your dd seem *to you*? That is the best guide, IMO. If you are concerned about celiac, and she's been eating gluten every day for 6 months, it may be worthwhile to test her. It's a simple test, after all, and if your doc/insurance balks, you can always pay for it immediately yourself and fight them on it later.

Oh, and if you are still breastfeeding, and *you* could still test positive for celiac (from your post I'm guessing you're in a gray zone right now), there is a possibility your dd would test positive, reflecting *your* positive status, and not her own. Confusing, eh?

I was faced with a similar situation. My ds was almost 2 when I was diagnosed, and we were still bf'ing. I decided to just take him gluten-free too and we'll test him when he's older.

Merika

[connole1056]

My 11 yr. old is a celiac, diagnosed 6 years ago. Her only physical complaint was stomach pain. She was, and still is very small for her age. My 4 year old is 27 pounds. She is smaller than her sister was at the same age. Howver, and I guess the point is, my youngest daughter has always been close to the fifth percentile in her weight. She is the classic case of a small child, so I do not worry about her.But I would have a child who moved from one percentile to a lower one checked. My daughter was tested right after birth because her pediatrician and I saw no point in waiting and having her suffer in case she did have celiac. I did not have anything invasive done, just the blood test. If her blood test came back pointing to celiac disease I would have had an intestinal biopsy done. I have never heard of a pediatrician not being concerned about a drop in the weight of a child. Every doctor I've spoken to has told me the birth weight is not important, but after that the child should remain in about the same percentile. Perhaps one drop is not important, but a continued drop is certainly cause for concern.