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Celia's Mum

Member Since 04 Mar 2013
Offline Last Active Mar 08 2013 03:01 AM
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Topics I've Started

Home Test Kit - Positive Result...at Last!

07 March 2013 - 05:18 AM

Having posted about my teen daughter's diagnosis of Celiac a couple of days ago in the 'post diagnosis' section, I just had to share something here about myself. I've had such ridiculously 'classic' Celiac symptoms for as long as I can remember plus a few other odd things to boot (I'm 46 F)! Well, given my daughter's diagnosis last week, I bought myself a test kit (a very reputable one) from Boots. I just did it and it showed a positive result - quite a faint second red line, but nonetheless, it was a red line. The instructions show it may come as a strong line or a paler one.

 

Well, it's a shock but not a shock! I'm just so relieved to know all these things weren't in my head like my GP would have me think. I was tested a year or two ago by the GP and it was negative. But I'd been off gluten a few months and they didn't think to tell me you need to eat it! (I'd naturally swerved away from it as figured it was bad for me) So GP has now issued another hospital blood test form and I'm going to stuff my face with bread for the next three or four days (I've been glutening for a good few weeks now, but I just want to make sure in case the pale line meant a weak positive) and hopefully I'll get a positive and can move forward. I can't wait to make this house a totally gluten-free zone!

 

In case anyone's interested, my main sypmtoms are: severe bloating and wind (8 months pregnant-type bloating most of the time. I'm slim but have a huge stomach!), right side pain (had liver/gall bladder scans - clear) cramping in stomach and beneath lower middle rib area, nausea, palpitations, stress fracture, melasma, lactose intolerance, dizziness and 'spaced out/about to faint' feeling coming in waves, severe long term 'C', dotted with bouts of 'D' (rare these days), headaches, wake up in night with numb arms and hands, TMJ problems (dentist made me a splint which helps), severe anxiety and, in the past, depression, extreme rash on arms and legs (in remission presently but you wouldn't believe some of the pics I have! It flares up in milder form from time to time), muscle twitching, long-term low grade anaemia (on iron presently from doc - who STILL didn't add all this up!), adenomyosis and very bad periods (also no doubt contributing to anaemia), seriously bad and increasing brain fog and terrible memory (never used to have).

 

That's it really. Just wanted to share! I so hope the official results come good as, while I don't want this, I DO want a reason to why.

 

Thanks for reading :-)

 


Newly Diagnosed - Could Use Some Advice!

04 March 2013 - 08:41 AM

Hi everyone,

 

New here so hoping to learn a few things. Daughter (14) just had diagnosis of Celiac disease by GP. Her Ttg is 18. ESR raised a bit - was 20, apparently (age needs to be factored into that, doc said). No anaemia and basic bloods normal (FBC). She's had a ton of symptoms over last couple of years, all leaning towards Celiac - painful bowels/stomach, cramps, regular migraines, numbness and tingling in hands and toes, freezing fingers and toes, dizziness (fainted once), muscle twitching (esp under eyes), and very low BP. Lots of autoimmune diseases in close family from Crohn's to hypothyroid to Sjogren's. She's been referred for an endo/biopsy but has to wait a month or maybe up to three months as when we see consultant it's not immediately for the endo - meantime, she's been told to keep on gluten (she's been semi-gluten free for a few months as she knows it hurts her instinctively. But without an actual diagnosis, 'slip ups' with school dinners have inevitably been happening.) And now she says she says she found blood in a BM (not much and bright red and it's never happened before. She's mostly constipated). I'm hoping she was mistaken about this and it was maybe undigested food - red pepper skins/tomatoes etc as we've had those in last couple of days. She was a little uncertain about this - one minute convinced it was blood, then possibly thinking it was food. Is a little blood normal for someone with celiac?

 

Anyway, if anyone in the UK has experience of getting a private appt I'd be keen to learn where and how! Seems impossible for kids to have this privately (I'd be paying, no insurance). Plus, is it usual for the GP to refer to the paed gastro for a consultation then she/he decides if endo/biopsy necessary? I kind of got the impression the referral was straight to endoscopy but I spoke to the consultant's secretary and she said it would be for an appointment only at this stage as he didn't always want an endo. Confused!! So the max wait time she said it could be was 3 months. A long time to feed your child poison. :-( Am I missing something here?

 

Well thanks so much if anyone has any comments or advice. I'll keep reading through the forums and get to know what's what.

 

p.s. I had celiac test a year or two ago as I have v obv symptoms but came back neg. I had been gluten-free for a few months. Should prob re-test now!