Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Growth Delay In Children


HaileyH

Recommended Posts

HaileyH Newbie

Hello..

My 8 year old son was just diagnosed with Celiac disease, I'm wondering how long it takes for them to start growing again. When he was born he was in the 53rd percentile for his height and weight. When he turned 5 he was down to the 14th percentile for his height and weight. Now he is less than 5th percentile. I became concerned when I was throwing out his old clothes because they were worn, not because he was growing out of them. He is constantly complaining about the kids at his school calling him a midget and other mean names. To top it off his five year old sister is almost the same size as him, people ask me if they are twins, which of course hurts his feelings. I took my concerns to his primary pediatrician, who ordered a wrist x-ray to determine bone age. His bones were saying he was 6 or 7 years old (he's 8.5). So we went to a pediatric endocrinologist, she was trying to chase down a hormonal issue, when his blood work came back positive for celiac disease. It breaks my heart that he is so little. I feel like I tried everything to get him to grow. The horrible part is that I was thinking he just needed more calories, so I was loading him up with cakes, cookies, peanut butter and jelly on wheat. Carnation Instant breakfast added to his milk to boost his calories.. I now realize I was only making him sicker.. Now that I know his diagnosis, I reviewed the symptoms of the disease. He was displaying almost all of them since he was about 1.5.. I just want my guy to start growing again.. :(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Amyleigh0007 Enthusiast

I understand your heartbreak. My son was 8 when he was diagnosed last year. He weighed 41 pounds. He was always by far the smallest in his class. He wore the same clothes when he was in 2nd grade that he wore in kindergarten. He acted like his size didn't bother him but I know it did. He would make comments every now and then about how he wished he could be the same size as his friends. My heart would break. But, I do have happy news! He has been gluten free now for a little over a year and he now weighs 54 pounds! He has grown 3 inches! I had to buy him a new wardrobe, underwear and all! He is still the smallest person in his class but it is not so painfully obvious now. He continues to gain weight and grow taller. This is his motivation to stay strict with his diet. You must be patient. It didn't happen overnight, but it will happen. Good luck!

ryebaby0 Enthusiast

I'm always looking for this thread....here's my son's story in a nutshell:

dx at 9, already very small and not slow-growing, more like non-growing

hospitalized , having fallen off the growth chart completely for weight, and in the 5th for height

subsequently put on gluten-free diet PLUS zinc (you have to have it to grow, newly dx kids are often seriously deficient) and iron and a multi

grew about 5 inches the first year of gluten-free life, gained about 40 pounds. Honest. (But he was life-threateningly underweight, so that still was a little less than average weight, all told)

He is now nearly 16. In the 50th percentile for weight, in the 80th percentile for height. He is going to top out at about 5'11" -- shorter than his 6'1" dad and 6'3" brother, but taller than 5"4" me and that's all that matters to a teenage boy :) Do not despair, and be patient! But if he was "programmed" at birth to be average or tall, there's no reason to think that celiac has permanently stopped his growth (and if he is short, well, maybe that's what he was meant to be)

The Kids Folks Apprentice

dx at 9, already very small and not slow-growing, more like non-growing

hospitalized , having fallen off the growth chart completely for weight, and in the 5th for height

subsequently put on gluten-free diet PLUS zinc (you have to have it to grow, newly dx kids are often seriously deficient) and iron and a multi

Hi wondering about the zinc - was this doctor rx'd or did you buy it over the counter? Also, was the zinc in addition to the zinc that was already included in the multi-vitamin? If it was over the counter, what brand, amount etc. Any info on this would be greatly appreciated.

sugarsue Enthusiast

Good luck to you and your son. I worry about growth too in my almost 7 yr old daughter who just barely made it over 40 lbs and is 6 inches shorter than her sister who is only 1 yr older than her. She has started growing and gaining weight since going gluten free but for us it's still slower than I would like but I keep hoping that it will pick up.

HUGS!

cyberprof Enthusiast

Ryebaby, actually celiac disease has been shown to be a reason why kids aren't as tall as they were expected to be. Early diagnosis is key, so Hailey your son should be ok.

I too had an underweight, non-growing boy. Up until he was 12 he was 75%tile for height, 50%tile for weight. Last year prior to gluten-free, hewas 15, no signs of puberty, had a bone age of 12.5. His bloodwork was normal and the docs blew off my celiac concerns. The GI said the tummy problems were from lactose. DS had been 95-98 pounds for TWO years - no weight gain.

DS decided to go gluten-free/CF in March of last year. He also did a lot of research and found a study that said that delayed growth could be reversed with Vitamin A and D supplementation just as well as growth hormones.

He started taking Carlson's cod liver oil (they have capsules -no taste at all), a multi-vit w/ 15mg (100% RDA) of zinc and sublingual B12.

After 6 mos. gluten-free he entered puberty and is growing. He still is underweight (105 pounds at 5'8") but is happy that he's taller than his sister now.

I can't find a link to the study about supplementing and growth but here are some that show that early celiac disease diagnosis allows most kids to catch up. If you want me to look for the other study about vitamins let me know.

Open Original Shared Link

Open Original Shared Link

ryebaby0 Enthusiast

My son took a prescription zinc liquid (it was pink, and tasted "not bad") as well as an ordinary multi (gluten-free of course, but it was just some regular multi, I can't remember if it had zinc or not but if it were as easy as that, I imagine he wouldn't have been on straight zinc too). He was on the zinc for the 3 months he was hospitalized, plus the 6 months after. Now he just chews VitaBalls and eats almonds (he's magnesium deficient, for other reasons)

Dosage would vary considerably based on weight, and I don't recall what it was. Your doctor ought to be able to help you with this. And as with all things, each patient is different. My husband was dx AFTER my son, and was 40 years old and 6'1". You just can never tell...

joanna


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 3 months later...
Surattius Newbie

Hi there,

My son is eight and has just been diagnosed. When I read your story I thought it was ours!

He is teeny tiny and weighs 40 lbs. His 5 year old bro is almost as tall and he is tiny too.

I'm so hoping that Gluten-free helps all of the family (I have three tiny sons!) but it's only week three so too early to tell.

Thanks to others for their success stories.

S

EmilyR83 Rookie

My son is 14 months old. He is in the negative percentiles for height weight and head growth. At 2months he was in the 50% and quickly dropped from there. He has only gained a lb since he was nine months old-and that was only since he started the gluten free diet.

He hasnt grown at all, and they said that if he doesnt start growing, they may consider giving him Human Growth Hormone to get him to start growing=(.

nasalady Contributor

We just got back from the pediatrician's office.....Emma (3 years old) has grown a full inch since May!!

She went gluten free in January; subsequently gained nearly two pounds in 5 months (that was about 10% of her starting weight at the time). Unfortunately today we were told she has now lost about 1/3 of a pound since the May visit, but we think that's due to the throat surgery she had at the end of August....her appetite was suppressed during recovery because it hurt to swallow.

Hopefully she will catch up on the weight before her next doctor visit!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,955
    • Most Online (within 30 mins)
      7,748

    AnnaLousGFBakery
    Newest Member
    AnnaLousGFBakery
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.