Any Thoughts On My Daughters 'symptoms'?

[Mum in Norway]

Just need feedback to see if I'm getting paranoid or if this realy is a reson to have her tested for celiac (again).

 

When she was a year old, my little girl was very ill. She refused to eat, had wathery dihorrea with bits of undigested food in it, was not able to sleep, whiny and moody all the time, lost weight, stopped her motoric development, stopped talking and the list goes on and on. I suspected gluten was what made her ill, and took her to several doctors who all said her tests came back fine and she did not have celiac. I still desided to take her off gluten, and a week later she was a whole other shild. Happy and playfull, talkative, started walking, eate well and gaind weight. Gone was the skinny leggs and huge belly. She was glutenfree for 1,5 years, and had strong symptomes when she'd had gluten by accident.

I took her to a specialist when she was two, and ha did all kinds of test. He said there was nothing wrong with her, and I should try to reintroduce gluten. That went very bad, and I stopped after three days. By then we had moved, and the local doctor has a son and a grandchild who both have celiac. We agreed to try one last time with gluten when she was 2,5 years, to see if it was possible to do new celiac tests after a while. If she got realy ill, we agreed, we'd leav it alone till she was 5-6 years, and just keep her gluten free until then. But to our grate suprise she was fine with the gluten! Doctor concluded she'd had an infant intolerance, imature gut or something, and that she was now fine. And she was for a long time.

But this spring she har been complaining about stomace ace and pains in her arms and legs. she is also a very wary child, and this has gotten alot worse the last few months. She sometimes has dihorrea, more and more often, and other times she says she needs to go but can't get anything out. She has also lost a little bit of weigt the last two weeks. Her appetite has also been low the last week or so. Also, she is often bloted/has gas, has a hard time sleeping.

Should i have her tested again? Or am i just being paranoid? I am having a biopsi in september, becaus of a weak positive test for celiac (and alot of strong symptoms), so maybe I'm just thinking to much about it?

I meen, kids have stomach ace some times, right? And their appetite goes up and down from day to day? legs and arms hurt when they grow, and some kids are just wary, with no real reason? Or are these things a good reasin to take her to the doctor? I belive it is, but I'm on a gluten cahallange now, feeling like s$#& and worrying my head off about everything and nothing, so I'm not the best judge of that right now, I think... I don't want to be that paranoid mum who keeps having her child tested for something that she never tests positive for.

That said, many of the celiac tests was taken after she went gluten free, and she never had a biopsi. She is now 3,5 years, and has been on gluten for 10-11 months.

[greenbeanie]

If your doctor is willing to order the tests, I think you should go for it! I was also a mom who everyone kept saying was paranoid. For several years, doctors brushed aside my concerns and kept insisting that I was overreacting and that my daughter just had colic, or growing pains, or abdominal migraines, or motion sickness, or simply a "very sensitive personality". But they were wrong, though I had to switch doctors twice before anyone would take my concerns seriously. With the third doctor I presented him with a long chronological list of her symptoms and told him up front that if he wouldn't order the celiac tests, I was going to yet another doctor until I found someone who would. He was wonderful and happily ordered the tests. And they were strong positives. Now my daughter is thriving, and it makes me so angry to think about how much pain we could have saved her if we'd only known four years ago that she has celiac. If I hadn't finally figured it out myself, I have no doubt that she'd still be undiagnosed. Sometimes a bit of paranoia is necessary to get things done!

Maybe your daughter is fine, and maybe she is just having normal kid problems. Sometimes it's hard to tell - especially while you're doing a gluten challenge and having a rough time of it yourself! But there's no harm in testing, and if she does have celiac it would make such a difference to know that sooner rather than later.

[Mum in Norway]

I desided to have her tested, so we have an appointment tomorrow.

Over the weekend she har almost stopped eating, she will only have fruit, vegies or popsicles, and freaks out if we try to give her something like bread or cerial, as she ays they hurt her stomace and make her legs ace. She knows about 'glutenfree', as she has been glutenfree before, but she does not know what foods contain gluten, so this is something she has figured out on her own. Still hope its not gluten, but if it is it's better to find out sooner rather than later.

[nvsmom]

I meen, kids have stomach ace some times, right? And their appetite goes up and down from day to day? legs and arms hurt when they grow, and some kids are just wary, with no real reason? Or are these things a good reasin to take her to the doctor? I belive it is, but I'm on a gluten cahallange now, feeling like s$#& and worrying my head off about everything and nothing, so I'm not the best judge of that right now, I think... I don't want to be that paranoid mum who keeps having her child tested for something that she never tests positive for.

That said, many of the celiac tests was taken after she went gluten free, and she never had a biopsi. She is now 3,5 years, and has been on gluten for 10-11 months.

 

Kids do not get stomach aches sometimes for no reason, just like adults don't. My celiac stomach pains were dismissed for almost 40 years because of that type of thinking - don't accept that statement from a doctor. Yes, appetite can change but if the change is from feeling poorly, then that is not normal either. As for growing pains... I had those as a kid. I remember having my knees wrapped when I was 10, and my dad calling it growing pains. Well, those growing pains never went away and now my knees always hurt and creak...

 

I think those are really substantial reasons to push for testing or to go back to being gluten-free.  As you said, she was healthier gluten-free so if the celiac disease testing shows nothing, I think you had better assume that her symptoms are caused by non-celiac-gluten intolerance (NCGI) and make her gluten-free for life anyways or she will not feel well. She sounds like an easy child to keep gluten-free so you might as well go for it (after testing that is).

 

Best wishes!

[Mum in Norway]

Thank you nvsmom!

I was beginning to get a sneaking suspicion that random stomace- and joint pain is not as normal as I have been told growing up...

She had her test today (only blood test, her doctor is on an hollyday, so diden't get to talk to him or hear his opinion), and she knows it was so that the doctor can see if her body needs glutenfree food. For my part, I will go glutenfree after the biopsy, no matter the result, and she says maybe we'll be glutenfree together, she seem to like the idea. Her doctor will be back from hollyday on monday, so I'll call him then for the results, and then we'll work out what to do if it is negative. A diagnosis of some sort would be nice, or doctors orders to take her off gluten, that way it will be easyer ti get kindergarden- and later school- to take it seriousy, but if we can't get that then I'll just have to do whatever makes her feel better.

[tarnalberry]

Just need feedback to see if I'm getting paranoid or if this realy is a reson to have her tested for celiac (again).

 

When she was a year old, my little girl was very ill. She refused to eat, had wathery dihorrea with bits of undigested food in it, was not able to sleep, whiny and moody all the time, lost weight, stopped her motoric development, stopped talking and the list goes on and on. I suspected gluten was what made her ill, and took her to several doctors who all said her tests came back fine and she did not have celiac. I still desided to take her off gluten, and a week later she was a whole other shild. Happy and playfull, talkative, started walking, eate well and gaind weight. Gone was the skinny leggs and huge belly. She was glutenfree for 1,5 years, and had strong symptomes when she'd had gluten by accident.

I took her to a specialist when she was two, and ha did all kinds of test. He said there was nothing wrong with her, and I should try to reintroduce gluten. That went very bad, and I stopped after three days. By then we had moved, and the local doctor has a son and a grandchild who both have celiac. We agreed to try one last time with gluten when she was 2,5 years, to see if it was possible to do new celiac tests after a while. If she got realy ill, we agreed, we'd leav it alone till she was 5-6 years, and just keep her gluten free until then. But to our grate suprise she was fine with the gluten! Doctor concluded she'd had an infant intolerance, imature gut or something, and that she was now fine. And she was for a long time.

But this spring she har been complaining about stomace ace and pains in her arms and legs. she is also a very wary child, and this has gotten alot worse the last few months. She sometimes has dihorrea, more and more often, and other times she says she needs to go but can't get anything out. She has also lost a little bit of weigt the last two weeks. Her appetite has also been low the last week or so. Also, she is often bloted/has gas, has a hard time sleeping.

Should i have her tested again? Or am i just being paranoid? I am having a biopsi in september, becaus of a weak positive test for celiac (and alot of strong symptoms), so maybe I'm just thinking to much about it?

I meen, kids have stomach ace some times, right? And their appetite goes up and down from day to day? legs and arms hurt when they grow, and some kids are just wary, with no real reason? Or are these things a good reasin to take her to the doctor? I belive it is, but I'm on a gluten cahallange now, feeling like s$#& and worrying my head off about everything and nothing, so I'm not the best judge of that right now, I think... I don't want to be that paranoid mum who keeps having her child tested for something that she never tests positive for.

That said, many of the celiac tests was taken after she went gluten free, and she never had a biopsi. She is now 3,5 years, and has been on gluten for 10-11 months.

 

As kids get older, their symptoms may become less obvious.  So, it's not that she doesn't have it, it's that you just don't notice it so much.  I would ABSOLUTELY get her tested, and - once whatever blood/biopsy testing you are doing is complete - test her on a gluten free diet right after.

[nvsmom]

Good luck with the test results.  Let know how it goes.