Worried about my daughter

[KitCatCan]

Hello all,
I’m going to GP for my daughter who is 8 but was wondering what you all thought. I keep going over my head that she’s fine, but she has so many different issues I’m not sure what to think.

she has been complaining of feeling dizzy, pains in lower legs, had pains in lower back but that has stopped. breaking out in random red rash that’s itchy but then disappears. Has headaches at times, and her eyesight has changed. She has glasses but now is saying her one eye has gotten better but the other has gotten worse.
she also suffers with acid reflux and stomach pains which docs put down to IBS.
She also has come to me saying she has been feeling shaky and says she sweats a lot.

am I just worrying or does it sound like something more serious? Thanks so much

Hi OP! Your DD sounds just like my DD (7) who is actually coeliac. I would request a coeliac blood test. My DD suffered for years with what they thought was random headaches, heartburn, pains all over her body, "toddler's diarrohea" as she had an awful tummy and dizziness. I pushed and pushed and finally the GP relented and did blood tests after 5 years - she was so coeliac she was off the scale. I hope you get answers x

Thanks so much for responding. She had a coeliac blood test a few years ago, but maybe needs another one done. It came back negative but we do have to keep her off lactose. She has been off gluten but not all gluten. She doesn’t have bread and pasta but will have some biscuits and small things with gluten. Could that be causing it you think? Thanks again

Yes I would ask for a repeat test - do you happen to know what her level was last time? Both my DC have coeliac - DD had a level of 250 on the TTGA and had so many symptoms, but I felt like I was banging my head against a wall with the Drs as no one would listen to me. She is a sensitive soul anyway, so she was written off by the GP as "just having a tummy ache". My DS had a TTGA level of 45 (if I remember correctly) and his coeliac was confirmed via OGD; his main (and only) symptom was diarrohea after weetabix! No other issues, aside from zoning out in school a few times (the neurologist thought he was having silent seizures) and some episodes of dizziness.

Is anyone else in your family coeliac? I have a really strong family link with coeliac (the entire female side of my dad's family! Unfortunately for my DS, he is the only male in the whole family who has it). I would ask for bloods and just make sure she is getting enough zinc and iron in her diet. I saw a kinesiologist who couldn't reiterate enough that zinc is such an important mineral to build a healthy stomach. We get tasteless zinc drops from them and add a few drops to a bit of water every morning.

Take her to the optician for the eyesight issue as well as the GP for the full list of symptoms.

I found this online - my DC had pretty much all of them. Since stopping gluten, my DD grew the most in 6 months than she ever has! No more (or very rarely does she have now) headaches, no more tummy issues, and she feels much better in herself, as does DS. The main symptoms of coeliac disease in children are;

• abdominal pain and/or cramps
• abdominal distension (bloating)
• diarrhea (loose stools)
• constipation (hard stools)
• nausea
• vomiting
• decreased appetite
• increased fatigue
• weight loss or poor weight gain
• short stature or poor growth
• frequent mouth ulcers
• delayed puberty
• behavioural problems
• iron deficiency
• osteopenia/osteoporosis
• hepatitis
• arthritis
• infertility
• migraines
• seizures
• neuropathy

I would definitely keep going with the gluten (she will need to be on it for 6 weeks before the blood test) and then, once you have the result, eliminate gluten and see how she goes x

Yes, went back today, they want her back for a proper eye test next week. So will see what’s happening with that soon

No, but my husbands and his brothers have a lot of stomach problems. He never got tested but keeps off a lot of food.
don’t know what her level was but will ask next time I speak to doctors.
will look into the drops, that sounds easy to give. She has to swallow reflux meds now which in the beginning was not easy but has gotten used to it now. She takes them when she says she is swallowing sick which is nearly every night.

So I need to keep her in full gluten for 6 weeks? I feel like that will kill her! Been to A&E a few times before taking her off it for such bad stomach pains, she couldn’t sleep and would be up for hours in pain

Unfortunately to get an accurate reading on a coeliac test, she would have to continue with gluten for at least 6 weeks. What I would do, in your shoes, is speak with the GP first. It may be that if she's not coeliac, she may be gluten intolerant but I would definitely want to get her checked over first by the doctor. See what they say about the previous coeliac test and if there is a chance it could be that. It's horrible when our DC are poorly. Best of luck x

Thanks for all the advice, it’s just really nice chatting to another mum about this. Thanks again 😊

Hello all, I thought I would update and see if anyone else had any thoughts.
was in a&e not too long ago because my daughter was getting worse. She is still dizzy but now suffering with a lot of lower back pain. Seems to all be worse at night. Sitting up with her now. They did an mri on her head a few weeks ago for the dizziness but they found nothing. They are arranging an mri for her lower back but don’t know when that is. She is just constantly saying she doesn’t feel well, dizzy and pain in lower back.
all bloods came back and she doesn’t have celiac disease. Idk…..if anyone has any thoughts.
the lower back pain is worrying me, I’m thinking it could be something with her bone marrow but maybe I’m being paranoid.