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Meggie

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  1. that's really interesting isn't it... I went this morning to have blood taken for the gene typing. I was chatting to the nurses who took the blood and they were saying they knew of a Doctor who was 78 years old who finally worked out it was celiac A DOCTOR. Apparently he was sick his whole life.... Yeah, it's an amazing disease really. And to think that here in Australia wheat is part of the 'Healthy Diet Pyramid' which is the basis for all healthy eating. It's taught in schools etc. It's such a staple food, apart from all the hidden gluten. Hopefully I'll get my blood results back soon, and if I don't have the genes then I'm going to go gluten free immediately anyway, as there is an obvious sensitivity at the very least, plus I'm going to take my children off it for a while and see how they respond. If I have the genes then I'll go for the biopsy, I guess. Hopefully it wont take too long for the blood tests to come back. I thought genetic testing may take longer than normal blood work. Anyone know if that's the case?
  2. Hi I'm guessing there aren't that many Aussies here, but I know of at least one, and I tried to PM, her but it's not working for me, maybe I'm too new here or something.... Anyway, I'm still waiting for my initial appointment with the gastro which will be in about 5 weeks, but in the meantime I was considering having the genetic testing. Can anyone tell me if this is expensive here in Australia, or is it just like any blood test? Also does anyone know how long it takes to come back? I know one member on here was waiting at least two weeks, not sure how long it took in the end. Thanks very much for your help. Meg
  3. I was only gluten free for two weeks, but am now back on it again awaiting the biopsy which will be a couple of months away. My initial appointment with the gastro is in 6 weeks. Magnesium.... yes, I've had other magnesium deficiency symptoms in the past too, my naturopath said not to bother taking any supplements just yet until she's finished healing my small intestine and worked on my liver first. I'm still early days in my treatment. Revenwoodglass, yes, I seem to have inflamatory responses too, your post gave me hope, thanks Thanks everyone,
  4. Hello Again I was just wondering if having lung / breathing disorders are commonly link or recognised with celiac disease or Gluten sensitivitie's? As I mentioned previously, I've had a sore throat for the past 10 months, I have also been breathless and have slightly breathing difficulties, like it almost feels like mild asthma, or like a mild infection or something, sometimes there's a bit of mucous too. I finally got in to see the Ear Nose and Throat Doctor, after a big wait and he said it all looks perfect . I'm just feeling more breathless and tight than ever, and increasingly so. I just wondered...... could it be related to gluten in any way...? Thanks
  5. Jillian and thank you you know the counsellor ask me a couple of weeks ago what I want to see myself doing / being a year from now. (she was expecting some sort of great goal like studying, or a new job or something I think) and all I honestly want is to have it within me to be that mother I want to be for those sweet things which need and deserve it. As you say, you can't get that time back, it's gone. they are so little for such a short time. The other thing I said was to feel my best and to at least feel normal.
  6. Oh YES ahorsesoul, I am so relieved lately. Whether it's celiac's, a gluten allergy, wheat allergy, or a gluten sensitivity, or even just the candida infection systemically, I feel like I'm at least on the right track now after all this time. I've been below par for most of my life. As soon as celiac is ruled in or out, I'll be going gluten free anyway, and when I've been candida free, and gluten free for a while, I'm thinking I might have some general allergy testing, just to make sure. I feel like there's light at the end of the tunnel, or health at the end of the tunnel at least. Yes, i certainly did think it was 'just me' and so did my mum and husband!!!! Thanks for the welcome
  7. Tracy Thank you so much. Hello up there in Canada, I'm down here in Australia. YES YES YES, I very much feel / know that my health has effected my ability to mother my babies the way I really wanted to. Especially since my second, my poor darling, she's only two now, and I feel that she's hardly had a life at all. I just don't have it in me to do all the things I want to with her and for her. I mean my children are all cared for and loved, but they don't get the activity they need, and as a result my two year old is delayed in her speech, as I've not engaged her properly. I really can't express how tired and weak I am all the time. I too worry that my five year old is going to remember her life and me this way. My poor new baby, well, he's 10 months old now, he's no where near had from me what he needs and deserves. I mean there are lots of cuddles, and warmth, that I can do sitting down, but I don't have the energy to talk and sing to them or do things with them the way I should. And YES, i too, have just recently though that I haven't 'carried on' enough about how I've been to the Dr. I actually did burst into tear the last time I went to see her. I will write a big list down to go through with the specialist Gasto when I see him, in about 6 weeks. Thank you for mentioning it to me, yes, I need to drive this thing more myself, not sit back and hope they look after me. I tend to not want to cause a fuss, or not want people to think I'm neurotic or something, but I look around and see that those who make the most noise do really get the best attention, especially amongst health care workers.
  8. Yes, I'll definately go gluten free as soon as I can. I haven't really shared my history yet. Sorry it became so long, but I wanted to share, hopefully I'm in good company. After slowly slowly getting more and more sick over the past 8 years, really just thinking I was a weak, crap human being. Thinking I had personal issues, that I couldn't cope with life at all, I really thought I was somehow a weak substandard person with a bad constitution or something. It just crept up on me. I was ALWAYS low in iron, even when I was on iron tablets, they just didn't seem to sink in somehow. I've always had bad skin, have been very weak, pale and with dark circles around my eyes. After having three babies within four years, and some additional stress in my life, I developed what I began to think was post natal depression and anxiety. I had constant pains in my belly, and bloating, my food was always coming back up (not vomiting, just reflux) I've had a constant sore throat for 10 months, which sometimes feels ulcerated. Plus I've had about 30 mouth ulcers in the past year. Slowly over the past year Ive felt like I'm just not coping with life at all, constantly breathless and weaker than ever. I get strange heart palpitations, and my mind / head has been so foggy that at times I've wondered if I was awake or asleep, or perhaps I'd even died or something. I have felt like nothing was real or nothing mattered. I was unable to make eye contact wth people anymore due to my eyes going a bit wierd. There were times when I coulnd't actually make out what people were saying to me as I felt so confused and disoriented. I started seeing sheets of light sometimes out the corner of my eye. My speech started sluring a bit, and I noticed my whole left side was much weaker and sluggish compared to my right. Somtimes my belly was in such pain, I'd be doubled over. I went on Nexium which didn't help. I started taking anti depressants and having counselling at the Dr thought I was a simple post natal depression case and very stressed. I didn't have anything to talk to the counsellor about because aside from how I've felt there really wasn't anything wrong. So I've had ultrasounds on my liver, and belly, uterus, I've had a CT scan for tumours, I've had an Echo on my heart, I've had my teeth checked (for the sore throats) (they found erosion of the enamel) I've had my eyes checked, countless blood tests. Seen a counsellor, thyroid checked, all fine. Then I met a lady who'd recently been diagnosed with celiac's and she mentioned a few of the symptoms, described the pale brown stool's, and the greasy ones that stick to the bowl, talked about the mouth ulcers and bloating etc. I started to wonder, as I'd had these symptoms, then she mentioned being low in iron. I had not heard of celiac disease before. Anyway, when I started googling I discovered that it accounted for all my symptoms except the sore throat. However bad reflux causes sore throats, so I'm thinking it could be that... Anyway, I went to see a naturopath and it's been discovered that I have a pretty bad internal candida infection in my small intestine and possibly through my blood, which may have caused the nerve damage. My liver function is bad. Since being treated for my candida infection I'm feeling a lot better, the Naturopath put me on a strict gluten free, yeast free, sugar free, milk free diet in addition to the medication bits she gave me. So I went gluten free for nearly two weeks, but had to start eating it again to rule out celiacs. So I've kept up the rest of the candida diet, except I'm currently eating gluten again, and my throat is killing me again. I've since looked at my Nana's health, my dad's health and my daughters health and thought, they really could all be celiac's too.... so although I'm dying to go gluten free once and for all, I'm also curious to get a proper diagnosis with the biopsy, not just for my sake, but maybe for my dad and three children's sake too. The only thing is that there is a big wait for a biopsy, even though I've elected to go privately, so I'd need to keep up the gluten intake for a few months yet. I'm really confussed as to what to do. I phoned my naturopath who is URGING me to stop the gluten right now, saying that it's doing me such harm especailly due to the candida infection, and now the blood's in and it's saying there are the antibodies there. She said to me tonight that even if I'm not celiac that I obviously have a huge sensitivity and need to be gluten free. I just don't know what to do, I'm so torn, I really want to just get well NOW, not wait a day longer to go gluten free, I've been sick for so long, I have three little ones who need me to be at my best ASAP too, but I know I'll always wonder about the biopsy..... What would you all do? If you've got this far and read this big epic well done and thank you
  9. Hi Sue What's the HLA-DQ typing? Is that the genetic test? I don't have any private hospital cover, so my out of pocket expense for the endoscopy and biopsy is going to be enormous. How annoying. FOR BOTH OF US!!!!! Ok, thanks for your help. Let me know how you go with your genetic testing?? Meg
  10. Ok, so Dr was very honest and said she doesn't know anything about Celiacs. The blood test was borderline and I've been refered to a gasto. I had been refered anyway due to symptoms. Here are the results, so anyone in the know I'd really appreciate your thoughts since the GP was no help. Total IgA : 2.2 g/l (0.7 - 4.0) so this was normal Anti - tissue Transglutaminase IgA (anti-tTg IgA) : 3.6 U/ml (negative <2.0) (borderline 2.0 - 3.9) (positive > 3.9) It said 'Borderline levels of tTg IgA detected. Significance at this level is uncertain. Consider HLA-DQ typing if clinically indicated. ' So what do you think? I had been off gluten for just over a week and was only back on it again for four days, do you think that could have effected the result? So if it's not actually celiac's, do you know what this level actually means, if anything? Thank you very much in advance.
  11. Yeah, I'm sure you're right, but mine does. I've been going there for years, and I've had a multitude of recent tests and they definately give them out over the phone. The only ones they don't is if something comes up and it needs further action. I'll ask the Dr for as much info as she can give me, then I'll ask for a print out to see if anyone here knows more. My appointment is in a few hours, (I'm in Australia) so I'll be back a bit later. Cheers Meg
  12. Hello Again. So I had a call from the Dr's office who couldn't discuss things over the phone, but said that the Dr needs to see me to discuss the results of the celiac screen blood test. Normally when i phone up for results (and there's been enough of those lately ) they just say over the phone 'no action required', so I'm guessing that something came up and I'll need the biopsy. I understand that just because something comes up in the blood test that it doesn't neccessarily mean it's celiac's. So what exactly does it mean then? I mean, if it's not celiac's then does it indicate anything for sure, like would it therefore indicate a gluten sensitivity in some way, whether it be an intolerance or an allergy? Or does the test not really indicate anything specific at all? Sorry if my question doens't make any sense. Thanks
  13. Thanks for sharing that info, it's really very interesting isn't it... That poor person who went for 5 biopsy's, good on them for persevering, they must have had a strong conviction. Alright, well I guess I'll see how the blood's go and take it from there. If it all comes back negative, I'll ask my Naturopath to do some allergy testing and good sensitivity testing then.
  14. OK, thanks Deb, I might go and have the blood test tomorrow then. I've been eating gluten two meals a day for the past three days, anyway, after only the week off, so I'm going to do it tomorrow. From what others are saying, it's coming across as though the blood tests can come back as a false negative, is this true. I just see that some are getting negative or low results from the blood test, but are still opting for the biopsy. Do you or anyone else know why this is, or what the story is there? I guess I'm just wondering approximately how accurate the blood test is?
  15. Hi Folks I'm so pleased to have found this site, I've been googling and googling for weeks trying to work out if I might have this. I've been sick for so long, increasingly so for at least the past 8 years maybe longer, not sure.... Anyway, I wont bore you all with my long list of strange symptoms, but I'm just wondering if a chronic sore throat could be related to celiac's or am I clutching at straws? All my other symptoms seem to be celiac related, except I can't find anything about a constant sore throat... I went off gluten for a week and the throat was nearly all better, and then have had to go back on gluten ready for upcoming blood test, and in less than two days I had bad belly ache, and sore throat, which is now really bad, plus laboured breathing. The other thing I wanted to know is if I'd been eating gluten my whole life and then went off it for a week to see how I felt, and then wanted to be tested (the blood tests), if going back on gluten (high gluten)for a week, would be enough to make sure the relevant 'stuff' would be there in my blood? If not how long do you think i should wait before being tested? Thank you very much in advance Meg
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