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My "little" One

sommer rose

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sommer rose Newbie
sommer rose
Posted

I was Dx with Celiac in december of last year and have been gluten-free since then. I took my 3yr DD to the ped last week and asked if she thought that she also could be celiac because, well, here are her symptoms...

She is at 0% for heigth and 5% for weight

Everytime she eats she has to go potty afterwards

Very clingy, always in my lap

Sleeps alot, can sleep easily 14 hours at night

Moody

No Appitite

Says her legs hurt

Dr is sending her to a ped. gastro. next wed.

Everyone thinks she is just so cute because she is still wearing 18mth clothes, but when you are the mom who is 6ft tall there is so much worry! :( I have no idea what I am going to feed her when all she will touch now is full of gluten. Her favorite food is bread and butter. :huh: Any ideas would be helpful.

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Smunkeemom Enthusiast
Smunkeemom
Posted

gluten free cereal bars were a big hit with my youngest when she got diagnosed at 12mo, also gluten-free animal crackers (mi-del) and lots of fresh fruit and steamed veggies.

Lisa Mentor
Lisa
Posted

I don't know much about children with Celiac. But I do know this...keep her on gluten and lots of it before you take her in on Wed.. It is fare bet the she is Celiac. Not being a doctor, I will leave that job for him/her.

Please ask your doctor to do a full blood pannel for Celiac.

Let us know about the test results.

I wish you well and your little one. Lisa

TCA Contributor
TCA
Posted

Make sure they run all 4 antibodies, an IgA deficiency, and a CBC to check for anemia. We found all of this out the hard way. You may have to insist, but please insist. My son was very similar in symptoms, plus he had terrible tooth enamel defects. He went through 2 negative biosies before we found out the tests are inconclusive for many little ones. His blood work was inconclusive, but the diet trial has been awesome. Don't worry about the foods. My son was really picky, but is starting to eat more and more now that he's gluten-free and his tummy doesn't hurt all the time. There are some really good gluten-free breads too - Cause You're special brand is our fav mix. It's almost like regular bread. I order it from glutenfreegourmet.com

Good luck!

taweavmo3 Enthusiast
taweavmo3
Posted

Oh yeah......we used to get comments all the time about how little Emmie was. When she was 3 years old, she was 20lbs and was also wearing size 12-18mo clothing. But, I am small myself, so the doctors thought it was just genetics. With you being so tall, that should be a huge red flag.

Your post sounds very similar, I would definately get her tested asap. Good luck, let us know how it goes.

sommer rose Newbie
sommer rose
Posted
  • Author

I don't know how many people have told me that she is just going to be "little", even daddy is against anything being wrong with her. My husband and I have 7 kids between us (all girls but 1) and they are all tall and healthy, but this one (the youngest) I have so many concerns. I've read about some Turner's Syndrome which can have the same effects and only happens in girls, then I have Celiac and maybe this is her problem, I don't know maybe I'm grabbing at straws and I hope that she is just fine, just "little". I breastfed all of my children and they all went to solids just fine, except her. She did not like any baby food barely ate adult and nursed the heck out of me. I had the hardest time breaking her and at 2 we finally stopped. She still wants me to hold her hand when she falls asleep and will not let me go to the restroom w/o her. Is being clingy one of the symtoms? She doesn't do anything w/o me and refuses to go out and play unless I do. Also her balance is way off. She is afraid to walk half the time. She didn't start walking until 18 mths and that was with a specialist.

TCA Contributor
TCA
Posted
I don't know how many people have told me that she is just going to be "little", even daddy is against anything being wrong with her. My husband and I have 7 kids between us (all girls but 1) and they are all tall and healthy, but this one (the youngest) I have so many concerns. I've read about some Turner's Syndrome which can have the same effects and only happens in girls, then I have Celiac and maybe this is her problem, I don't know maybe I'm grabbing at straws and I hope that she is just fine, just "little". I breastfed all of my children and they all went to solids just fine, except her. She did not like any baby food barely ate adult and nursed the heck out of me. I had the hardest time breaking her and at 2 we finally stopped. She still wants me to hold her hand when she falls asleep and will not let me go to the restroom w/o her. Is being clingy one of the symtoms? She doesn't do anything w/o me and refuses to go out and play unless I do. Also her balance is way off. She is afraid to walk half the time. She didn't start walking until 18 mths and that was with a specialist.

My son didn't walk until 16 mos and was sooo clingy. It's crazy how much this disease affects people emotionally. He still is pretty picky, but is eating so much more variety now. I think it's because he feels better. Since my kids were diagnosed, I now think I have it. It's a genetic disease, so all of your kids should be tested, but she really sounds like a candidate. I gotta run for now - kids are calling, but I'll check in later....

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sommer rose Newbie
sommer rose
Posted
  • Author

Sorry it has taken so long to get back. I have taken Sommer to the Ped Gastro and he is testing her for ecerything! Cystic Fibrosis, Celiac, Autoimmune disorders, Parsites, and the list goes on. If she has Celiac he will do the endoscopy if she dont he is going to do both the endo and colonoscopy. I am falling apart thinking that I am putting her through all of this.

TCA Contributor
TCA
Posted

Try not to be so hard on yourself. All of the same tests were run on our son and he's no worse for the wear. I think you're doing the right thing by investigating the possibilities. I guess by the time we found celiac I was just relieved that he was doing better. It wasn't a matter of fearing what the diet might be like for him.

Make sure you tell them to run all of the bloodwork at one time. We got nickeled and dimed a lot and had to have multiple blood draws. I now know to ask for everything at once. Make sure the run all 4 antibodies for celiac plus the IgA deficiency and a CBC to check for anemia. I'm not sure which autoimmune disorders they're looking at, but if they require blood work, make sure they get on the list too.

We also just had a run of growth hormone and thyroid tests and vitamin deficiencies for my daughter who's 1, but the size of a 3 mo. old. These were done by an endocrinologist, but other docs can order them. She also ordered an bone X-ray to check her bone age. All was normal for Megan, but if you can include those on the bloodwork, I would reccomend it. .

The cystic fybrosis test is easy. Both my kids have had it. They just collect sweat.

Parasites is also easy, at least for her. You, however, get to collect her poop! :blink:

It's been an uphill battle for us. I hope you don't think I'm telling you what to do. We just learned the hard way. Good luck with everything. I'm here as a mom going through a similar situation if you need anything! It will get better! :)

  • 2 weeks later...
sommer rose Newbie
sommer rose
Posted
  • Author

:unsure: Test results came back and no Celiac. Now the DR wants me to see an Endocrinologist to check for Turner's Syndrome. I'm am so tired of wondering what is wrong and if I should do this or that. She is the youngest out of 4 and so many problems with her stomach and heighth, weight and feet and balance and ect.

The dr's seem to think your crazy after awhile, but I know that there is something and she shouldn't be this little without growing for 9 months. So off to another dr and hope to figure this out.

Terese

Guest nini
Guest nini
Posted

you can always try the gluten-free diet and see if it helps... you do not need a Dr.s permission to try the diet.

The blood tests can only rule it in, they cannot ever completely rule it out, I don't care what anyone says...

My daughter's blood test was also negative and I have celiac, but she responded very favorably to the diet, and her pediatrician put "gluten intolerant" in her chart... We tried the diet for a three week trial, within ONE week we had a totally different child. She was also very very tiny and a very picky eater. The list of all her symptoms is very long and the gluten-free diet completely solved all the problems... so, my take is that the blood tests are not as reliable as the Dr.s would like you to believe, and dietary response is your best indicator of what is going on. Since you have Celiac, I would be willing to bet that she is at the very least gluten intolerant and will benefit from the gluten-free diet.

Ursa Major Collaborator
Ursa Major
Posted

I totally agree with Nini on this one. What have you got to lose by trying the diet with her? Before you put her through so many tests, it wouldn't hurt to try the diet for a month to see what will happen. ALL her symptoms could be caused by celiac disease. If nothing changes in a month, you can still do all the other tests.

wolfie Enthusiast
wolfie
Posted

I am sorry that you haven't really gotten any answers. I also agree with nini.....it certainly won't hurt to try the diet at this point and either there won't be a change or she will improve. It won't hurt any testing at this point either.

Good luck and please keep us posted on how your little sweetie is doing.

TCA Contributor
TCA
Posted

My son's tests were also negative, but his drastic improvement with the diet makes the dr. think that it was a false negative. Have you done gene testing to rule out celiac? WE did since none of the other testing was conclusive. We used prometheus. It was $$$, but made us feel like we were heading nthe right direction when we saw he had the genes. Same with our daughter.

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      By Wheatwacked · Posted

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    • Riley.
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