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Making Up Growth


Pattymom

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Pattymom Newbie

Hi, My daughter has been off gluten for the last month, she is 3 1/2, 35 inches tall, 25 lbs. She has no symptoms other than the slow growth, though she was sensitive as an infant, with horribly stinky diapers. After I took many foods out of my diet (she was completely Breastfed), her diapers, rashes and fussiness improved. We started giving her gluten aroudn 2years, and hade blood work done which was normal. Since she had no other issues we let her eat gluten. I stayed off of gluten, and had mildly positive blood work after being off for many months.

So, now she has fallen off the growth charts. Her celiac panel was negative, we go an endocrinologist this week, though we took her off gluten again, just to see what it might do. Seh has grown 1/2 inch in the last month, and gained nearly 1/2 lb. Which is huge considering she had no change at all in the 6 months before that.

How fast have other kids started growing once off gluten? I wondering if she is going to climb back onto the charts, or fi we should just be happy with any forward progress. How long did they continue to recover lost height verusu just playing growing at a normal rate, we would like any of it, though I am really tired of people asking how old she is, and telling me she is soo tiny. I had noticed.

Also her Insulin-like growth hormone was on the low end onteh normal range (the lowest number really) Does anyone have experience with growth issues beyond gluten. If gluten free means more growth, do I still need to investigate teh growth hormone issue or can I leave well enough alone.

I'm hoping for the voices of experience to help me here.

thanks,

Patty


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SusanGB Newbie

Hi Patty-

Wow - talk about a similar situation! My son is 3y3m, 34.5 inches and 27 pounds. He has been followed by an endocrinologist since age 1 and all tests seem to be inconclusive. His levels are always low-normal. He was tested for celiac at about 12-15 months of age and was negative. My aunt has celiac and I've been thinking of getting him retested since he was so young at the first test. He has no other symptoms but my aunt had zero symptoms when she was diagnosed in her 60s. They can't seem to figure out if he is growth hormone deficient or not which is so frustrating! I'd love to hear what you learn from the endocrinologist. We got back in March for his next follow up which is when I'll ask about re-testing him.

Good luck-

Susan

Worriedtodeath Enthusiast

We put all three of mine on gluten-free/CF diet and we are on week 6 of it even though no one had a positive result. THe oldest and middle kids just slowly over time have slipped off of the growth chart and since the baby has to be gluten free, we thought why not.

The youngest has had the classic syptoms of Celiac and she has gained over a pound and an inch in the last 6 weeks (21 months old)

The middle son has gained two lbs and grown about an inch as well - he's 7 and needed a belt with slims even the ones with the waist adjusted to the smallest setting

THe oldest 10.5 has only grown 8.5cm in the last 2 years. He's down from 90% at age 2 to 5 % at age 10. He's grown in the last week!!! (i check him every week) an entire cm and has grown a total of 1.5 cm in the last month. Now maybe that is a growth spurt kicking in, it's too early to tell at this point - but he normally only grows around his birthday and his rate of growth over the last 2 years is only .35417 a month. And he is one of the kids you never noticed any growth on. You know some kids wake up and their pants seem 2 inches too short. Not him, only by measuring can you tell he has had any growth. It's that slow you never notice any growth. This week we noticed he was taller and checked him. So we will see if he continues growing this fast next month.

I've been told by the gi and the ped that if Celiac is the problem, they should bounce back to the normal growth curve for them. The baby's height is closer to normal and we shall see how the boys go.

Thanks

Stacie

mmcdaniels Apprentice

My 8 year old son's growth since going gluten free in mid-December has been phenomenal. He was a very large baby-- 9 lb 9 1/2 oz, 22 inches. Sometime between age 2-4 his growth stagnated. He did grow but very, very slowly. He could wear the same clothes for 3-4 years. At the beginning of this school year, he was still wearing size 4 or 5 pants. Sunday I had to buy both my kids new pants and my son is now up to a size 8! He has grown more in the two 1/2 months than he did in the preceding 3-4 years. He went from 50 to 60 pounds and gained at least an inch of height. He was super-skinny and is now a bit on the hefty side. He isn't really eating more--just is now gluten free. It looks like he is heading back towards the top of the growth chart after a few years towards the bottom.

Marsha

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    • 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!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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