My daughter will turn 10 yrs old in two weeks. She is currently 4'2 and weighs 49 lbs. A few years ago, she was diagnosed with Celiac Disease after our pediatrician noted she had quit growing (height and weight) for over a year. She was diagnosed through bloodwork and then biopsy with our ped gastro. (She is VERY sensitive to even trace amounts of gluten which cause 7 - 10 days of diarrhea and stomach cramps). A follow up biopsy a year later showed that the damage had healed and she was doing well on her diet. We saw a good bit of growth during that time before it leveled off. She grows enough to keep our pediatrician happy, however, our gastro is concerned that she is still so small for her age.
My understanding is that he is worried about her growth/development in regards to growing up and puberty, etc. He said that she needs to gain a bit of weight to be comparable to her same age peers, even if she is still small at that point. He told us several weeks ago that he was hoping she would pick up some weight during the summer and if she doesn't by October, he wants to start her on some supplemental drinks, etc.
My question is, how important is it that she pick up extra weight?
In our opinion, she is very healthy. She eats well (lots of fresh fruit and veggies from our garden). She's academically gifted and a straight A student. She participates in extracurricular activities such as theatre, soccer, karate and cheerleading (Most of those are seasonal, so she isn't in them all year-round). She's happy and has tons of energy. We all eat gluten free as a family and her friends accept her celiac disease as a very minor part of her life. I'd rather not supplement with extra things and call attention to her weight if at all possible. (She does take a multi-vitamin every day). I don't want to imply that her size is 'bad' as she is sensitive at times to being smaller than her classmates. I worry about the focus on her weight. And, I'm not really sure we can change her weight. In spite of our best efforts (lots of high fat/calorie items added to her diet), she hasn't gained anything since that last doctor's appointment.
However, if there is truth to the concerns about her weight interfering with her overall growth, I'm on-board.
(As some background info, my brother has Crohn's and he has never held a full-time job because of it. He worries and complains about it constantly. Every doctor he's been to has given him a clean bill of health, but he is hyper-focused on the problems of the past and cannot get past his medical condition. I want my daughter to not be so focused on Celiac Disease. It's part of her life, but not the defining characteristic).
Thank you for your help. I'd talk with a nutritionist, but they are very expensive around here. After school starts back up, I think I can talk to the school's nutritionist to make sure what we're feeding her is fine, but for now, I'm operating on what I can read about or look up online.
In my opinion, your opinion is totally right. Your grasp of nutrition is likely better than what you will get from most mainstream nutritionists and you are able to discern that your child is healthy and robust.
It’s great that they were able to document good healing of the intestines with biopsy. It sounds to me as though you’ve learned where the little traces of gluten can hide. That's a helpful move for many, as is full oat avoidance. As your daughter lies around the 2 percentile for size, that means that one child in every 50, or in every 2 classrooms, is as thin/small as your daughter, or smaller. These children are not all malnourished or at risk of brain damage or sterility. Nearly all of them are quite healthy, you can see. It’s possible that you and or your husband are a little low in height yourselves. True? Possibly thin-boned?
Your daughter certainly shows no signs of being mentally or physically compromised and I’m sure she is not. All the concern about low growth trajectories in children is first to discover whether there’s a digestive problem, which you have found and corrected, and then about whether the brain and nervous system are being allowed to develop optimally. There’s no big secret to this by her age. Compare her mental and physical abilities to her peers and to the abilities of her relatives, and you will see. It’s incredibly uncommon for low weight to retard brain development and it’s usually quite obvious when it can. Beyond such rare cases, low weight is only linked to reduced cancer, diabetes, heart disease, and obesity risks in the child’s future. There is absolutely no reason to force-feed such a child and some supplemental “nutrition” drink is only going to reduce other calories taken in, while increasing milk proteins that I’d rather see limited. If you truly wish to raise her weight, you’ll have much better luck with providing regular sodas, candies, and hydrogenated vegetable oils, as these foods help the body to ignore its regular controls. Obviously, I’m being facetious, but it’s true. There is no evidence-based reason for this effort to forcefully increase her weight and eliminate her natural weight controls.
Your gastro doc will not be able to bring you science research evidence that a low weight in the presence of healthy diet options, is harmful, though he’s heavily convinced by the constant formula company sales people (yes, child and adult formulas as well as infant) praising weight gain efforts and quoting some old papers from poverty-stricken regions of Africa.
Yes, puberty is a concern. Many of your daughter’s peers are beginning puberty at incredibly young ages but this is not a sign of health. The older age one begins puberty, the lower their risk of reproductive organ cancers and other cancers in adulthood. Those are the only side-effects of delayed puberty I’m aware of --- that and delayed interest in sexual activity and delayed risk of teen pregnancy, etc. If menses never begin, that’s a concern, but it’s not going to be the case here.
Still, as you are doing, it doesn’t hurt to evaluate and question. We do want to know that nothing more is preventing her from absorbing nutrients well. Does your daughter have any residual symptoms? Irregular bowels, excessive gas, rashes, excessive behavior swings? Do her stools ever float? Milk intolerance is pretty common among celiacs, though certainly not found in all of them. It’s something to consider. I’d love to see her receiving probiotics if she isn’t already.
Your brother should be looking into gluten and milk protein intolerances if he is suffering any symptoms today. I’m sorry that his past experiences have been so traumatic. Crohn’s certainly can be. I’m happy that you are on top of your daughter’s health so early and that she will grow well adjusted.
Linda F. Palmer, DC
"The Baby Bond"