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Zalie added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseUpdate And A QuestionI posted here a little while ago with my 3 year old daughter's symptoms, asking if they sounded familiar to anyone here and what I should do if her blood results came up negative. She had her blood tests 2 weeks ago, and today we got a call from the hospital saying they'd come back strongly positive! My daughter is already having a hernia operation so the two surgeons have agreed a date and brought the operation forward to the first date they could both do (mid-Oct) so she can have the endo and biopsies done at the same time.
Over here, she is entitled to gluten free foods on prescription, but only if she's confirmed as celiac by biopsy. My question is, if she has strongly positive bloods, is there a chance she could still have a negative biopsy? I've read that there can be patchy damage, so it can be missed and give a false negative result. Is that likely with a strong positive blood test? If they do get negative biopsies, would that mean they'd say she doesn't have celiac? I'm confused about what a strong positive bloods and negative biopsy would mean, and whether she could still qualify for prescribed foods with a negative biopsy.
Positive bloods + positive biopsy = definite celiac.
Positive bloods + negative biopsy = ...?
Thank you again for any and all help!
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Zalie added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseProbiotics - Have I Made Things Worse?We've got an appointment to see a paed GI in early september and, as my daughter won't be having any bloods taken until after she's seen him, we don't know whether she has celiac or not yet.
She's always had mushy poop - very messy and often escaping from her nappy at night. For the past 6 weeks we've been giving her a gluten-free probiotic yoghurt drink every day, and now she's gone from being mushy to constipated. She still goes almost every day, but her poop is now ranging from tiny rabbit pellets to huge rock hard stools.
What have I done? Has anyone else had a similar experience with probiotics? I don't know if this is a step towards getting better and she'll gradually develop 'normal' stools, or if I am just making things worse. I've stopped the probiotic drinks as of a week ago, but she's still having the hard poop issues despite that. The bloating after food and all the other 'celiac type' problems remain, but we've switched from mushy poop to hard poop, and I'm not sure if I've made her worse, and why the probiotics would do that? She has dairy every day already, so I can only guess it's the actual probiotic part of the drink that's caused the problem, rather than the yoghurt.
I'll obviously be discussing this with the Paed GI when we see him, but was wondering if anyone else had come across a similar problem when introducing probiotic drinks?
Thank you very much for any input and advice.
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Zalie added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseSymptoms, Celiac Testing, And What To Do If The Tests Come Back Negative Advice Please?My daughter is just over 3 years old, and is having the following symptoms:
Mushy poop – like Weetabix soaked in milk. Often leak out of nappies, frequently to the extent have to shower her off & change all her bedding.
Very smelly poop
‘Wee’ potty trained easily. Not poop potty trained at all, and is very anxious about it because of the tummy pain.
Constipation – at least once a month
Thin hair – thickening now, but bald until about 2
Extremely smelly flatulance in really excessive amounts
Belly flattish at start of day before eating, and often noticeably much larger by the evening
Very poor appetite – has to be coaxed/reminded to eat food
Pale complexion with dark shadows under eyes
Very prone to being tearful/having dramas about things (but she is 3!)
Petite child – 25th centile
‘Itchy bottom’ & complains of ‘pain inside’ at times
Dry skin, and is always absent mindedly scratching
She also had bad silent reflux as a baby, and refused to eat any solid foods until 13 months old (saw a Ped, he wasn’t concerned as long as she ate before 18 months). When she actually started eating solids, her weight gain then remained pretty static for about 6 months before she picked up and started gaining weight well again.
We’ve got an appointment for blood tests for celiac, anaemia and general infections next week. My mother and aunt both have diagnosed celiac (diagnosed as adults), and there’s a ton of milk intolerances/allergies across my side of the family. I have IBS and am prone to mouth ulcers and cracked corners of the mouth, which I’ve read can be celiac symptoms, but I had a blood test about 12 years ago when my mom was diagnosed and tested negative for celiac back then.
My worry is: what happens if the blood tests come back negative? Where should I go from there? I don’t think my daughter is desperately ill, but I do think that there’s something going on with her, you know? The locum GP I saw said that, if the tests came back negative, then perhaps my daughter just needs more vegetables and more sleep! I know that’s not going to be the answer, as she sleeps a long time and eats loads of fruit and veg, but I don’t know where I should go next?
I'm just concerned - does this sound like celiac in a young child, and if it turns out not to be celiac, then what is it??? Do her symptoms ring any bells with anyone here as to what might be going on with her? Who should we see and what should we do, if we do get a negative test result?
Thank you very much! Any and all help is gratefully received!
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