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When Will Growth Go Back To Normal? Do All Kids Have Catch Up Growth?


albauer94

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albauer94 Apprentice

My 3 year old son was diagnosed with celiac at the beginning of May.  He went from 75th percentile in height and weight to the 10th percentile since he was around 18 months old.  Between 2 and 3 he only grew about 1.5 inches and actually lost a half pound.  Since his 3 year appointment in March until today at an appointment with his regular pediatrician, he has only grown 3/4 inch but gained 2 lbs.  She was pleased with the growth and weight gain but I guess as a mom, I'm still concerned.  He had a bone scan at 3 and it showed his bone age was an entire year behind.  I'm guessing this is a good thing since it means that he will most likely catch up to where his body is supposed to be?

 

Does catchup growth really happen?  He has been strictly gluten free for almost 3 1/2 months and we've only slipped up once or twice getting accidentally glutened by something that was supposed to be gluten free.  Am I just being paranoid and it's still to early to see a major difference in height?  He did go up a shoe size and by the looks of it, he will size up again within the next month or so.


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ravenwoodglass Mentor

3/4 of an inch in a couple of months when he only grew 1.5 inches in a year sounds like not a bad spurt.  He hasn't been gluten free for very long and chances are good that he will catch up in time. Try not to worry too much as you caught celiac early but it will take some time for him to heal.

albauer94 Apprentice

Thanks.  I suppose I should think of it as only 3 months instead of 5 since he was not gluten free for the first two months and I'm sure he wasn't absorbing any nutrients.  And as much as it sucks that he was diagnosed with celiac at 3, you're right, I'm glad it wasn't five or ten years from now after it triggers who knows how many other problems.    Maybe I just expected a miracle overnight and need to get a bit more realistic and celebrate small victories :)

africanqueen99 Contributor

My youngest was DX at 18 months.  When she went in for her 2 year check-up she hadn't grown yet.  At her 3 year check-up she had gained SIX POUNDS (!!!).  Her Ped said the average for that span should have been 3 pounds, but she is catching up.  I practically danced in the office.

 

Point of the story - it took 18 months to see that growth.

absullivan6 Rookie

This post is so reassuring.  We are one year gluten free and while my almost three year old has grown, he's still incredibly small for his age.  He's noticeably smaller than his classmates and just wearing 2T stuff.  We go in for our one year appointment a week from today and I'm so anxious about it.  We did our bloodwork last Friday so hoping for great results and that his growth catches up.

africanqueen99 Contributor

Oh, yeah, my kid is still small.  She's long and lean (just like her sister - and my body before the kids blew it out!).  She's now 3.5 and wears 18 mos shorts.  Still short, too.  Like I said, she's got a killer catch-up coming along.

albauer94 Apprentice

I feel better knowing that his growth is normal for a celiac child.  At his doctor's appointment this week for an unrelated matter, the growth chart height for weight came up that he is now in the 84th percentile for BMI and he is by no means even the least bit chunky other than his belly that has not quite gone away since going gluten free but it's about half the size as it was before and not rock hard anymore.  His doctor was confused with the chart and even said that it must not be right.  

 

He is definitely the smallest boy in his class and I'm not sure what to do with pants this winter.  This will be the third winter wearing 2t.  


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  • 1 month later...
foam Apprentice

Catch up growth is a real thing but its something that happens strongly early on with kids that got low quaility/not enough breast milk or not enough sleep in the first 6 months. My son was below the 5th percentile from 2 months to 6 months but had huge growth once he started solids. At age 2 hes above average and continues to grow at a 100th percentile rate. Having said that he would have been bigger with a good start and weve been pretty excessive with his nutrition ever since. He ate at least one avocado aday from age 6 months to a year and eats eggs every mornig, he drinks  1 litre of goats milk now everyday. He wears size three tops at the moment, hes never eaten anything with dubious nutrition (grain free). So you can increase rate of growth(both parents are under average btw). But youll get less growth from an older child just because they are growing slower at that age. Still you have 17 years left to push his height so dont waste any meal.

StephanieL Enthusiast

Catch up growth is a real thing but its something that happens strongly early on with kids that got low quaility/not enough breast milk or not enough sleep in the first 6 months. 

 

Can you site this research?

I'm sure there are some children who fit this but we are speaking of Celiac disease here and kids under 6 months wouldn't have been getting a ton of gluten if any.  One of the reasons it is difficult to dx kids is because they don't typically have substantial damage at a young age.  

mommida Enthusiast

I just want to reassure you moms.

My daughter was diagnosed with "probable" Celiac when she was 16 months old.  (She was too sick for the endoscopy, One positive on the Celiac panel, positive for both DQ2 and DQ8 genes)  She went gluten free and her health improved and she was growing.

 

The fall she was turning 6 everything went bad. It seemed like glutening symptoms but worse.  She was getting pretty tiny again and was still wearing stretchy 2T shorts under her uniform romper.  She was diagnosed with Eosinophilic Esoophagitis and was put on an elimination diet for all top 8 allergens including peas.  She wouldn't drink the amino formula.  I don't know if you can really understand the panic of trying to feed her enough calories and nutritients let alone, but keep her growing too.

 

As soon as she healed, she was growing again!  She is 12 years old and taller than me.  In fact she is 5' 4" (average adult female height) 

 

Just focus on a healthy gluten free diet and let your child bloom into their body.

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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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