• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Birdsong

  • Rank
    New Community Member
  1. Thanks for the replies guys, appreciate your comments. Tricia, it's good to hear of someone else with a similar experience, especially with regards to the hunger/weight thing. I've had more than one raised eyebrow when I've mentioned that to people. They look at me as if I'm just making stuff up to excuse my weight issues. I think maybe it's other people that make me feel as if I should get tested. My sister especially, poo poohs everything unless it's come from a Doctor officially. People are not very understanding I've found, unless it's official. I supposed I need to work out how much that bothers me. Maybe I just need to believe in myself more, I KNOW what my daughter and I experience and I KNOW how these things stop as soon as we remove gluten, I shouldn't really need the assurances of a Doctor for confirmation. Our Doctors here are not very clued up imo and are far too quick to dismiss things. When we spoke to a Doctor about all the things my daughter was experiencing, she started asking my daughter about school, if she enjoyed it or had any problems etc. It was clear she thought my daughter was making things up in order to stay off school. She didn't ask any questions about her physical symptoms at all. She just wasn't interested. If I did decide to try to get tested properly, I would have to try to find a private route for this I think.
  2. I'm sure the title will convey my frustration. I've recently had a bit of a 'eureka' moment and I'm pretty sure I'm right in my thoughts but if me, an 'average joe' (or joanna, lol, I'm female) type can join the dots, why has the Doc not done so?! I thought my daughter might have been Coeliac but the initial blood test we did at home came back negative. (We're in Scotland and it's a nightmare dealing with the Health Professionals here, you wait at least 3 weeks for an appointment then if you need blood taken you need to wait another week for an app for the nurse to do that. Red tape gone mad! So we bought an online test recommended by Dr Chris Steele who is the Ambassador for Coeliac UK and is Coeliac himself.) Despite the negative result, we were positive daughter had gluten issues and we removed gluten from her diet earlier this year. Her health has improved hugely, she had many many issues from birth which were all previously unexplained and all these have now gone. Anyway, I stopped eating gluten too at the same time. I didn't think |I needed to, I was just doing it to support my daughter. However, I actually now think |I might be Coeliac myself. I'd welcome your views on my thoughts? I was a skinny kid, so skinny you could see my ribs. I suffered severe stomach pain every day but it was always worse in the morning and Mum used to think I was putting it on to get out of school. I genuinely wasn't. I had recurring tonsillitis and ear infections. I had migraines from very early teens. I was still getting tonsillitis as a young adult as well as upset stomachs and frequent migraines but not too much else that I can recall. When I was pregnant with my 3rd child, I developed a severe angry red itchy raised rash on both legs mainly on the front/side thigh area from hip to knee. The rash has small spots/blisters that were full of clear fluid and I scratched these until they bled. once the blisters had burst, the itch wasn't quite as bad. Doc had no idea what it was and suspected washing powder allergy or similar. He gave me cream that didn't help and I had the rash for weeks. I got this rash regularly, it would die back then appear again a few weeks or months later, every time it was in exactly the same place. A new Doctor also didn't know what it was but gave me a different cream which helped a little. After maybe 3 or 4 years of this, the rash finally stopped coming back until it appeared once out of the blue a few years later. I'm obese and was (until I stopped eating gluten) manically hungry all the time. I'd eat a meal then want to eat again within a short space of time. I went to the Doc with complaints of dizziness, tingling in hands and feet, a feeling like my brain was full of cotton wool and migraines that were increasing in severity and frequency. Because my Father had strokes, the Doc sent me for an MRI scan, this was completely normal. No reason was found for all my complaints. My suspicion is that the Doc thought I was either a hypochondriac or someone who just moaned about trivial things for the sake of it. I'm not, I just had lots of unexplained things going on and I wasn't happy about accepting the 'you're just getting old' or 'it's because of your weight' stock answers. It's only since my daughter's issues that I've started looking at my own. All of the things I'd been complaining about have gone and I've lost 10lbs so far without doing anything differently other than removing gluten. I ate a bag of crisps one day that were supposed to be gluten free and within an hour I had to go to bed as I felt so awful, dizzy and 'woolly headed'. I had no idea why I felt so bad as I knew I hadn't eaten gluten. A week later I saw a recall notice online about the crisps as they contained wheat despite the pack saying they were gluten free. I figure that kinda proved things. So, what do you think? Does it sound like I could be Coeliac? I haven't eaten gluten since Feb so the usual testing wouldn't work now. Doc insists there is no gene test she can do that would be of any relevance at all and she was pretty dismissive about it all imo. Her opinion was if removing gluten is helping you and your daughter than why don't you just keep doing it? Which of course we will but I do wonder if I should eat gluten again to get tested properly. I have to admit to feeling a level of frustration about all of this as I feel someone somewhere should have picked up on the possibility of a serious condition. I think I'd just be glad if someone could confirm I'm not a loopy old bat who's over thinking things now and has joined the dots wrongly.
  3. Hi guys, thank you for replying. It's good to read other people's thoughts and experiences. Daughter is feeling better but she still has stomach pains, heartburn (although not as bad) and occasional chest pain and sore to breathe thing (she gets the chest pain at the same time as the heartburn so it's obviously linked). It's *only* been 6 days since she was glutened though so I guess it's to be expected. We're in Scotland and docs in our neck of the woods generally aren't too clued up about gluten imo. I've been complaining on and off for years about not feeling well and I've had various tests done and even an MRI scan and they've come up with nothing other than to diagnose vertigo. The whole family stopped eating gluten when we suspected daughter had problems and all the things I was moaning about seemed to have gone so I suspect I have gluten issues too. I haven't been dizzy or felt the same 'woozy head' I always had previously, for one example. I bought a coeliac test for her online that was recommended by this doc who is coeliac himself.....http://whatallergy.com/2013-10/interview-with-dr-chris-steele-tv-doctor-and-coeliac. He's a doctor and he had no idea he was coeliac, nor did the doc who was treating him, he diagnosed IBS which is what most of our docs here tend to do (again imo). Anyway, the test was negative so I figured there was no point in going to the doc. We felt we needed daughter off gluten asap rather than waiting months for a biopsy which would have been the next step. I know removing gluten was the right thing to do but sometimes it's good to get a bit of reassurance or to get someone else's thoughts on what's going on, especially since it's all quite new to us. Thanks
  4. Daughter is 14. After a 'Eureka' moment, I realised (with no help from the medical profession who were very nice but pretty useless during all the times we looked to them for help with miscellaneous symptoms) that my girl had gluten issues. After taking gluten out of her diet, she improved hugely. No more sore stomachs, heartburn, feeling sick, tingling hands and feet, joint pain, dark circles under eyes, anxiety, yadda yada yadda. She had many many of the listed symptoms, not just one or two. After being small all her life and not growing at all in the last two years, she's grown almost an inch in the last month. (We took her off gluten at the start of February.) I don't need a Doctor or a test to tell me she has gluten problems.It's pretty evident imo. Anyway, she was at a school thing at the weekend and ate a packet soup there on Saturday afternoon. She hasn't been feeling well since Sunday and it's got so bad that she had to get sent home from school today (Tuesday). She has a migraine, sore joints, really bad pains in her stomach even if she eats good food we know is ok. She feel sick and has a pain in her chest when she breathes. All these things she has experienced before so I'm sure it's because she's had a severe reaction to ingesting gluten via the packet soup on Saturday. I know this is wheat and gluten heavy after looking it up online. In my heart I feel all her symptoms are as a result of being glutened but as all this is new to us I think I'm looking for other opinions or reassurance that being glutened after removing gluten from your diet can be really quite severe and her symptoms do fit with this? Also, does the timeline seem reasonable to tie her symptoms down to being glutened?
  5. I registered on this site after reading this thread. I'm so happy to see others with the same questions I had / have about breast feeding. My daughter is now 14. Up until last week she had heartburn and diarrhoea every day and often felt a little nauseous after eating. She's small for her age and has ADD and Dyscalculia. She also suffered from anxiety (requiring referral to a child psychologist at age 11) and has experienced many, many other unexplainable issues. None of which have ever been given much attention to by Doctors. She suffered with terrible colic as a baby. She was breast fed and used to vomit a lot, cry and be generally unsettled all the time. I found her old baby book last night that had all her clinic details in it and the comments noted by the health visitor about how unsettled she was. At 6 weeks old she was hospitalised as she had terrible reflux and it used to make her lose her breath. We were sent home with a bottle of Gaviscon and the advice to keep her upright as much as possible. Her height growth chart showed a substantial drop in growth over the years yet this was never questioned. We were told she was just going to be a 'small package'. I'm 5'6" and her Dad is 5'7" so they felt this was justified. I always thought we were kinda average and wouldn't have produced short kids. After recently reading lots of information about gluten, I am now absolutely 100% convinced my daughter has been affected by this since birth despite being told she couldn't have been because she was breast fed. She was blood tested for Celiac and that was negative but that means nothing as far as I'm concerned, she IS affected badly by gluten. She has been eating a gluten free diet for the last week and the improvement in her is amazing. She no longer has stomach pain or diarrhoea. No heartburn or any of the other weird things she was experiencing. She now sleeps better and she hasn't felt as anxious as she used to. It's early days for us but I have no doubt this is what we need to do. I feel huge amounts of guilt that my ignorance about this subject has meant she lived all her life being affected. I'm angry that the medical profession never picked up on this but I'm angrier that I didn't either. I'm an educated person, why didn't I ever join the dots?! I don't believe Doctors are all knowing. The proof is in the pudding, regardless of what they tell you 'can't be'. Because my daughter is now 14, it's very unlikely she will grow now. She hasn't grown at all for the last 2 years so I expect that's her done. I wish with all my heart I'd picked up on this and made the connection when she still had a chance to grow properly in a healthy way. I thank God for the internet now, I didn't have access to all this information when she was small but I do now and can at least try to make things better for her from here on in. Good luck to you all, especially those whose instincts are telling them something different to what the experts say.