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Growth On gluten-free Diet


GFM

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GFM Apprentice

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

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

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

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, 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

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
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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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