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 On gluten-free Diet

GFM

Recommended Posts

GFM Apprentice
GFM
Posted

Hi. I'm new to the forum. I have an 8 yr old son diagnosed with celiac (by bloodwork and endoscopy). His only symptoms have been slow growth and stomach aches. In fact, the only reason the doctor sent him for testing was because he dropped below the growth chart. Anyway, he's been on a gluten free diet for four months now. The stomaches are gone and his recent follow-up bloodwork has been great. I know every child grows differently, but can someone share their experience as to how long until some accellerated growth happens? Thanks!

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

Celiac.com Sponsor (A8-M):


celiac-mommy Collaborator
celiac-mommy
Posted

Our daughter had a growing issue before diagnosis. She had always been in the 95th percentile on height and weight until the time between age 3 and 4 when she dropped significantly. She weighed 39# and was 39in tall the entire year. The dr origionally thought it was fine-since kids do grow at different rates, BUT after her biopsy at her 1 month check-up, she had gained 3#. She had gained 12# by her 6mo follow-up, and even though she has been at 52# for the last year, she is now 48.5in tall and back into the 95th percentile for height and 75th for weight. She is tall, slender and growing perfectly!! (her 18mo check-up was last week and all is great!)

bbuster Explorer
bbuster
Posted

Our son was 10 when we suspected he might have Celiac. His bloodwork was positive, and we did follow-up endoscopy when he was about 10 1/2 to confirm the diagnosis. He started the gluten-free diet in earnest in Jan, 2005, and it took about a year to get the bloodwork from stong positive to weak positive to borderline to negative. He has been negative for at least 18 months.

Garrett's small size was the main symptom to prompt testing for Celiac. He never had active GI symptoms. Since he was about 2, we have had many tests to see why he is so small, and nothing but the Celiac ever showed up.

Since having negative bloodwork, he has gone from growing 1 inch per year to growing 2 inches per year. He is only 55 inches tall at age 13 - less than 2%. Parents are normal size - I'm 5'7 and his dad is 5'10.

After consulting with a pediatric endocrinologist and another exhaustive round of testing and finding nothing, he is going to start growth hormones.

gfpaperdoll Rookie
gfpaperdoll
Posted

bbuster, have you checked for other food intolerances with your son? You might consider grain free except for rice... Some people do not respond to the regular gluten-free diet with all the gluten free grains and stuff. Do you know which genes he has? That might be a good clue to his situation.

Is he dairy free & soy free?

I have a grandson age 11, that is in the same shape, he tested positive thru Enterolab & is double DQ1 & his parents have decided that he does not need to be on the gluten-free diet. I know stupid...

but, they also decided not to give him the growth hormones. There are worse things in life than being short...

bbuster Explorer
bbuster
Posted
bbuster, have you checked for other food intolerances with your son? You might consider grain free except for rice... Some people do not respond to the regular gluten-free diet with all the gluten free grains and stuff. Do you know which genes he has? That might be a good clue to his situation.

Is he dairy free & soy free?

I have a grandson age 11, that is in the same shape, he tested positive thru Enterolab & is double DQ1 & his parents have decided that he does not need to be on the gluten-free diet. I know stupid...

but, they also decided not to give him the growth hormones. There are worse things in life than being short...

We have not tried dairy & soy free, but he gets little if any soy.

Garrett has responded to the gluten-free diet in every way except getting taller. He has gained weight (filled out) and his distended belly has shrunk. His energy levels improved tremendously. His pre-diagnosis slight anemia is gone. All of his bloodwork looks great. So after all of this time I'm not sure that the Celiac and short stature are connected. His GI doctor says everything looks great - keep doing what we are doing.

gfpaperdoll Rookie
gfpaperdoll
Posted

The growth hormones are a hard call, I in no way know your situation...

but I would encourage you to cut out dairy. No one needs to drink milk "to make their bones grow" It is just another one of those things that we have "bought" into.

I cannot remember all the stuff about dairy & wheat but somehow when you are eating wheat it protects the gut in some way or something, to the effects of dairy. Maybe because the wheat damages the villi enough that the dairy does not penetrate... I researced this over three years ago when I was trying to get my stubborn son to do the right thing with his kid's diet. So I am a little fuzzy on the details. I just remember that it is a good idea to cut out dairy. Plus a lot of us react to it. & there are a lot of the celiac doctors that do not believe that dairy is good for you, Dr Fine with Enterolab.com for one, & there are others.

You might want to research this for yourself.

Wishng you the best.

celiac mom Newbie
celiac mom
Posted
Hi. I'm new to the forum. I have an 8 yr old son diagnosed with celiac (by bloodwork and endoscopy). His only symptoms have been slow growth and stomach aches. In fact, the only reason the doctor sent him for testing was because he dropped below the growth chart. Anyway, he's been on a gluten free diet for four months now. The stomaches are gone and his recent follow-up bloodwork has been great. I know every child grows differently, but can someone share their experience as to how long until some accellerated growth happens? Thanks!

My son was diagnosed at 14, and it took a long time for him to get on the charts for his height. At 14, he was barely 5 feet 2 inches. After 3 years on the diet, at 17 he is 5 feet 10 inches (two inches taller than his dad!). He is still very thin, but has consistently gained weight since being on the diet. After the first 2 months on the diet, he only gained 2 pounds, but after 12 months, he gained 11 pounds. I think for everyone its different. His body first needs to heal, then the growth will happen. My son had no other symptons either, just falling off the growth chart. He had maybe an occasional stomach ache, and migrane headaches. But now if he is glutened, he reacts very strongly! It's hard to be patient, but growth will happen!

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.