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

Short Stature Only Symptom


Debra Baum

Recommended Posts

Debra Baum Newbie

My 6 year old son was just diagnosed with celiac. He has always hated eating and has always been very small but never complaining of stomach aches, always normal bowel movements... He was 6 in February and is now smaller then my 4 year old daughter. He is by far the smallest in his class. We are starting the gluten free diet this week and although it will be a very hard change because he hardly eats anything anyway, I'm looking forward to him hopefully thriving. Does anyone have a situation like this? He had a bone age done and it came back that he was the size of a 4 1/2 year old. The Dr. said this was good because he has lots of room to grow and catch up. What if this diet does not work? Will he need growth hormones? SO confused. Would LOVE any advice or similar situations.

Debra


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



Celiac.com Sponsor (A8-M):



domesticactivist Collaborator

We are going through the same thing with our daughter. She is 12, but is smaller than 7 year olds we know. She has never even made it onto the growth chart. We have a long-awaited appointment with an endocrinologist this week. Her bone age showed age 10 (23 months below - far outside the standard deviation) - also the same good sign you got!

We've run all sorts of blood tests and most came back normal. We did the genetic screening for celiac and it's negative (99% sure brother has it, that's why we checked her).

She has also always been an EXTREMELY picky eater. She's had phase after phase where she'll only eat one food for months, then suddenly hate it. When she was 4 she decided to be vegetarian (dad was vegan, so she had support). We knew how to do vegetarianism with complete proteins, but she just turned into a sugar fiend!!!

Once we started GAPS she started eating nearly everything offered her! She eats about 10 times as much as she used to. She used to take one small bite and swish it around in her mouth with disgust for minutes at a time, and maybe take one or two more. Now she eats whole meals without problems. I'm pretty sure she's grown in the past few months - she seems more substantial. We'll see the numbers at her dr visit on wednesday, and see what they have to say.

I don't think she has celiac, but I do think she has benefited greatly from GAPS and being completely grain free. Her Tourette's is much better now, too.

ravenwoodglass Mentor

Yes it is quite possible that you will see a significant increase in growth at that age. I have a freind whose nephew was diagnosed at about age 7 and he was very tiny for his age. He grew a number of inches the first year and as an adult is now about 6 feet. In my own family diagnosis didn't come until my son was almost 20 so for us the diet was too late.

As far as growth hormones go, if he doesn't catch up a bit after a year or so ask for a referral to an endocrinologist to check if those would be advised.

Darn210 Enthusiast

You've still got lots of time for growing. Like Ravenwoodglass said, after you've given the gluten free diet a good try and IF you haven't seen some decent results, there is still plenty of time to pursue growth hormones if you want. In the meantime, ask his grandmother what his dad's growth curve looked like. My husband's family all ran a little small and really skinny until they got close to puberty. As adults, none of them are giants (the guys all average around 5' 9" or so). Based on my son's growth curve, at the moment, he looks like he's going to be about 5' 5" as an adult . . . but he's been gaining ground in the last two years (like his father and uncles did) so I'm not too worried.

You may find that after your son goes gluten free he won't be as picky of an eater. He may have learned that when he eats, it hurts . . . so he doesn't. Before my daughter went gluten free, there were foods that she absolutely refused to eat. Who refuses pizza??? Now pizza is one of her favorites.

ShelleP Newbie

My son was diagnosed in November at age 8 as Gluten and Dairy intolerant. He was one of the smallest in his class and ate like a bird. Since removing Gluten and Dairy, he has experienced his highest growth rate since he was born and eats like a Trojan! Hurray! Don't panic. It's truly amazing what happens to them when you remove the poison from their system.

bbuster Explorer

My son was extremely small for his age. Short stature was almost his only symptom that prompted me to have him tested for Celiac, and he was confirmed positive (blood test followed by endoscope) when he was 10. It took awhile to get his bloodwork negative. His growth rate did improve, but he was so far behind, and the improved rate was still at the low end of normal - no catch up growth. After enough time for that to be evident, we did go the growth hormone route, and it was quite successful. Without it, his expected adult height was about 5 ft. He is now 5'5" and nearing the end, might stretch out another inch or two, or maybe not. But it has helped his self-esteem so much just to be in the ballpark of normal, instead of being a full head shorter than everyone in his class. I can give you more detail if you like.

As someone else posted, your son is younger, so you have time on your side. If he grows well just with the gluten-free diet, that would be much simpler (and cheaper)!

Good luck!

WhenDee Rookie

How fantastic that you found out so early in his life!

I am 32 and only found out 8 months ago. I am six inches shorter than my next-shortest sibling.

What I did want to tell you is that during college I went through a period where I couldn't afford to eat much, and I ate mainly rice and frozen vegetables. I wan't totally gluten free but almost, just by accident. I grew TWO inches! After I was 19 years old!

I don't think I reached my full potential, but I wasn't diagnosed until I was an adult.

Your son has twelve years (at least) of time to catch up. I'm sure he will grow to his potential or very near it.


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.

  • 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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,417
    • Most Online (within 30 mins)
      7,748

    Idontknowu
    Newest Member
    Idontknowu
    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

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.