Celia's Mum

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  1. 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 :-)
  2. Hello toworryornottoworry - thanks so much for your reply. I have to disagree with your view that the tests are 'next to useless' and 'garbage', although I do certainly believe that they should never replace a proper doctor-ordered blood test. Even if a home test kit shows negative, people with symptoms should still seek medical help, even if it doesn't turn out to be celiac on a medical test. I also believe that in many cases, for many reasons, home tests will provide an inaccurate result. In many other cases, however, they will produce an accurate result but, of course, this should totally be backed up by medical investigation. In my case, at least, the positive result on the Biocard has given me good reason to follow this up with my GP, which may not have happened without the test kit. If only a handful of people gain a medical diagnosis one way or the other with the test kit as a starting point then that justifies their existence. Whether one chooses to pay the £20 for the kit is purely a personal decision. It's a bit on the pricey side, but in my opinion worth it. My GP has now agreed to blood test me (like he did my daughter when she came out with a strong positive TTG last week) and I didn't have to 'demand' it either. I'm not sure where you are, but in the UK it seems that the TTG and IGA testing is the standard initial test along with total serum IGA to test for deficiencies. If the serum levels are normal and the TTG is positive then it's onto the gastro constultant for endos etc. If not, the GP will then run the endomysial test if celiac is strongly suspected. But I am neither a doctor nor a path lab chemist/expert so I can't comment on whether this is correct or not. Seeing as the NHS use the TTG test widely as a first indicator, I will assume, for now, they know what they're doing and that it is in line with whatever UK guideline have been recommended. Guess it's different in different countries. Thanks for all the other info regards biopsies etc. Yes, I feel I may well be headed that route, as is my daughter who has an appointment first with the gastro specialist in a month's time. He may or may not decide to go the endo route with her. I've learnt that sometimes they don't with kids - just depends on each individual case. Meantime, I've been glutening myself for the last few weeks and have 'upped' my intake to the point of feeling permanently sick and in pain! So we'll see... Thanks and best wishes!
  3. Thanks, txgal748. I asked her about haemorrhoids and she wasn't really sure if she had or not. Could be internal, I guess. Re the private appt, it's not so much that there isn't availability - for instance, I could get myself a private appt tomorrow most likely. The problem is the private hospitals in our area don't seem to take kids under 16. They simply don't employ paediatric gastros. I have possibly found a bigger children's hosp that has a private dept - it's further away but that's fine.Fingers crossed they come good. The NHS appt a few weeks away is in a great teaching hospital near us and I'm in no doubt would offer a great service. It's the frustration everyone suffers here in the UK - we all have to join the queue, although I do believe the NHS, on the whole, is a remarkable thing and I wouldn't want to be without it! Interesting that you didn't have to have an endo - so it can happen! Daughter and I a bit nervous about that. If anyone else has celiac in the family, it's likely to be me (have all the symptoms and so far DXed with IBS). I'm getting re-tested asap - first test was when I was gluten free. My brother has Crohn's, my dad IBS forever (I think undiagnosed celiac) and my grandmother suffered with so many celiac symptoms all her life, it makes me want to weep she went undiagnosed - or at least never even tested as far as I know. Anyway, I hope you're doing well and things are getting better for you. Thanks nvsmom - this board is certainly a great resource! Oddly, she said the water didn't go red - which may be some comfort and point more to undigested food?? I never saw it. I told her not to flush next time so I can check it! She's quite anxious about things anyway so I'm wondering if it's a case of her 'seeing the worst' when it was just food. I'll be taking it seriously though, and following up. I just hope I can get her an appt sooner rather than later. Thanks for the kind wishes :-)
  4. 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!
  5. Hi mommida, Sorry - maybe didn't explain well! Yes, she's been eating gluten - I think enough to make it show in the blood test, which it seems to have done. At home she'll have gluten free stuff occasionally as it suits her better, but has school dinners - always quite 'gluteny' and other slip-ups. And for instance, last week I couldn't get gluten-free lasagne sheets, so just made regular. It's just when she has a gluten free sandwich for eg, the pain isn't there like it is immediately with a regular sandwich. It's just been guesswork until now, so I'd buy gluten-free stuff here and there so she's not in pain ALL the time. That's what I'm hoping re the constipation. It's very worrying hearing your child report that. Thanks for the reassurance and you reply.