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Growth On gluten-free Diet

GFM

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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!

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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!

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Coeliac or not coeliac

      By Wheatwacked · Posted

      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
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