What's Your Child's Story?

[CeliacMommaX2]

I'm just curious what everyone's experiences have been with their children.  I have read a lot of blogs & books from an adult's point of view, but am curious what other parents' experiences have been in having their child diagnosed and how the kids did after going gluten free. 

 

My daughter's main issue was constipation and we were battling encopresis issues when I asked to have her tested for celiac.  She tested positive with flying colors on both the blood work and biopsy.  My son tested positive on the bloodwork, but negative on the biopsy, so we are still trying to figure that one out.  It's been a month since our daughter went gluten free and I haven't really noticed any changes in her.   I wonder if it just takes longer and I need to be more patient.

 

How did your child do after going gluten free?

[StephanieL]

DS had allergy testing done (known allergies) and DH asked for a Vit. D level on him.  It was 0 so they sent us to an endo who did the Celiac teasing which was strongly +.  After a second opinion we did the biopsy which was -.  Dr. #2 called Fassano who said we could scope every 6 months or go gluten-free.  Went gluten-free and there was not change till DS started probiotics (about 3 months after going gluten-free).  He's been gluten-free for 5 years and still has an elevated tTG but no S&S.  It dropped little by little (20-30 points) for the first year or two but then stalled.  Looked into thyroid issues, he's hypo. Started on synthroid at 5 or 6.  tTG's still not normal. Went to Boston last summer for a cluster &$*( of an appointment that lead to nothing new so we are where we are.  Tests run at Mayo showed him WNL while our hospital here never did so who knows!

[nvsmom]

My oldest son has mild aspergers, and had some emotional control issues and stomachaches for years. His growth was slowing down a great deal too, dropping from over the 75th percentile to below the 30th.  When we stumbled across celiac disease, it rang a bell for me and my life long symptoms, and I tested positive.  My son tested negative but we were only given the tTG IgA, and no other testing options.  We made him gluten-free about 2 years ago anyways.

 

It definitely helped with his stomachaches and headaches.  It also helped him keep a more even keel and increased his concentration.  His growth really has not improved but I don't think it has dropped anymore.  I really wish he would get a growth spurt because he is 12 and shorter than most of his friends.... and his 10 year old brother too.

 

My middle son tested negative, and appeared to have no issues with gluten, but he eats gluten-free anyways.

 

My youngest also tested negative but has a gluten sensitivity.  He used to be in the bathroom every couple of hours and get tummy aches.  His BM frequency is quite normal now.

 

I honestly don't know if any of my kids have celiac disease, but I do, and some of them had symptoms, so I did not want to risk their health with a typical diet.  When they are older (and hopefully out of the house) they can challenge their gluten-free status.  For now, I treat them all as celiacs and they are well.

[beth01]

My daughter was diagnosed 10 months ago ( I, a year ago tomorrow).  Her main symptom was passing out cold for no reason.  She also had lots of bouts of "stomach bugs" when her brother didn't.  Most times she would tell us she puked in the middle of the nights.  She also complained about tummy aches.  They were never all very frequent, until the passing out at school, then came my diagnosis and shortly hers there after.  She is doing a lot better, no more passing out, no vomiting at all the last year, and very minimal tummy aches.

 

My son tested negative and since insurance won't cover the gene testing, we will be getting him tested every two years.

 

My daughter has done well with the gluten free diet and the transition to it, but then we just cleaned our whole house out for me, she just then had to make the transition at my ex-husband's. My son eats mostly gluten free, sometimes he has treats out and about with his dad, but I would have to do a gluten challenge on him for his testing.  It can be hard for the kids, sometimes other kids don't quite understand, but then they get it.   My daughter actually just met a girl at her school that has celiac also and they have became fast friends.  They're kids, they're resilient.