Hello - New To Forum - Questions On Joint Pain, Growth,...

[suebny]

Hi -

My name is SueAnne and my 10 year old son was diagnosed with celiac this fall mainly as a result of follow up family blood testing after my dad found out he has it. My sons results came back equivocal so our pediatrician said to try a gluten free diet and retest in 6 months. This made no sense to me so I took him to the Celiac Center up at Columbia University and they did their own blood work which came back positive and then did the endoscopy which also came back positive. My son had complained of stomach aches and is very small but nothing extreme. He has been gluten free for about 4 weeks now and is doing well. What's interesting to us is that when we ask him if anything feels different he says his stomach feels better and also his ankles and "fingertips" - when I asked him to show me where on his fingers, he pointed to his knuckles. This is a very long way of asking (sorry but I wanted to introduce us) whether he could have had some sort of joint damage that I should be concerned about - also, is it possible to feel better so quickly? What have your experiences been with your kids? Lastly, for those whose kids were in the "short stature" category, did you see a change in growth and how quickly did it occur? Thanks very much - we're so new to this all we would love to know anything!

[happygirl]

Hey SueAnn!

Welcome to the board! We are happy to have you here. It is great that you have a definitive answer to your sons problems!

In terms of joint pain-many Celiacs had arthritis type pain (myself included). However, for most of us, it went away by going gluten free, indicating that it was a symptom of Celiac versus having something like RA. I was repeatedly tested for RA and other arthritic conditions, of which, it turned out, I never had---it was all caused by a gluten reaction. To my knowledge, it does not cause permanent damage (say, like RA can). For most of us who have the arthritic symptoms related to Celiac, we are fine when we remain on a strict gluten free diet, but if we are accidentally "glutened," the symptoms will return. I describe myself as two sets of people: a normal person once I was on a strict gluten free diet (and it takes a little while to get there), and a separate person when I was eating gluten/have been accidentally glutened-all my symptoms return and life is miserable. I prefer to be the normal person and eat gluten free

And yes, it is entirely possible for your child to start feeling better already!! "Recovery" times seem to vary-from immediate to very gradual. He is probably still healing, so he will probably still continue to feel better. In terms of autoimmune diseases, Celiac is actually really fascinating and rewarding, because it is the one AI disease that we know what the problem is (gluten) and keeping gluten out of our system (100% gluten free!) is the management needed to live a normal life.

I'm happy to hear you had such a great experience at Columbia. Dr. Green's book is listed in my signature and I highly recommend it. It is a great reference guide to have on hand, and I wish it was out when I was diagnosed...it explained so many things to me (and covers many of the symptoms, like bone and muscle pain.)

Let us know what we can do to help. I'm sure parents will chime in about this and growth.

Laura

[mamatide]

My 5yo DD has been gluten-free since April 2 2006. She made a noticeable improvement at the 3 week mark gluten-free, when almost all of her celiac symptoms went away (diarrhea, bloated and sore belly, paleness, nasty temperament). She also had joint pain (usually complained about her legs) which improved after a couple of months.

She grew 3 inches in 6 months and has put on 4 lbs (a lot for her). She still complains of intermittent pain in her limbs (and her fingers), so I'm thinking she's still healing.

She can tolerate some milk now (she was drinking lactose-removed milk) which tells me her intestine is improving as well.

Keep it up! Take pictures and keep a diary (height, weight, symptoms). You'll be astounded.

And welcome!

mamatide

[ryebaby0]

My son was dx when he was 10, and I think he was in the 5% range for height (we won't go into his weight!). The year after his crisis/dx/hospitalization, he grew about 2 inches; the two years after that he has grown about 6 and is now in the 50% range for height, as tall as me at 5'4"and age 13.5. His celiac dx actually came after a dx of juvenile RA; it was his rheumy who realized the joint pain/swelling was a symptom of something else altogether. Once he had been gluten-free for about 18 months, he never complained again. You have a bright future ahead of you

joanna

[Cam's Mom]

Hi!

My daughter used to complain that her legs hurt (this was years before we got a diagnosis). We thought it was just "growing pains", whatever those are. But sometimes in the morning when she woke up it would hurt so badly that she couldn't walk and had to crawl around the house. Of course we just thought she was being dramatic.

Since her diagnosis 8 months ago she has grown 1.5 inches and gained 4 pounds. Surprising she was always in the higher percentiles for both height and weight but had started to level off a bit in the months prior to diagnosis (like down to 75th% rather than 95th%). No more leg pains, even with all that growing!

B.

[Ursa Major]

I ALWAYS had terrible pain in my legs, and really all my joints from the age of three. People would just claim it was no problem, since they were just growing pains (I don't believe there is such a thing, but there is a real reason for those pains).

Too bad I never outgrew those 'growing pains' until, at the age of 52, I eliminated all gluten and lectins from my diet.

Which makes me wonder about some of my kids, who also had those leg pains when younger. But they refuse to be tested.

[TCA]

I too had "growing pains" all my life, was tested for RA, and was finally told it was all in my head. At 29 I went gluten-free while breastfeeding my celiac daughter. For the first time in my life I don't hurt. I never got a diagnosis, but I wouldn't eat gluten on purpose for anything. I got glutened last week and am still feeling the effects of it.

As for how fast symptoms improve and growth, my son was wearing a size 24 mos last Dec. We started the diet for him 1/2/6 and he's now in a size 4T. Amazing. He's finally on the charts for the first time in his life at 20th percentile, which should be about right since both his parents are short. His symptoms improved after about 3 weeks.

I'm so glad you found your answers!!! Welcome!

[FeedIndy]

My DD was a failure to thrive baby-which is what led her doc to celiac in the first place. She had dipped all the way to the bottom margin at 9 months (from 50% at 4 months when the weight dip began), prompting all the tests. She went gluten free at 9.5 months and gained 5 ounces in the first 5 days (quite a bit for a 15 lb baby). At 10 months she had bumped up to around 5%. At 12 months she was at 7%. At 14 months she is now in the 15th percentile so she is rapidly gaining!

Congrats on finding a solution to problems you didn't even know existed! That's what happened when my oldest two accidentally went gluten free (they were just eating with sis for a few days and-boom!-things they'd never told me were problems suddenly fetl better)