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29 Comments

  1. 1

    Gail

    You certainly have reached the best online support group. I wonder if you have looked at coeliac.org.uk. I don’t live in the U.K. but I see there’s a lot of information on that website. Perhaps you could contact someone there before your appointment. They do mention that 1 in 100 people in the U.K. have celiac disease – that certainly isn’t rare! Chances are the actual rates are even higher. If your doctor doesn’t take you seriously, don’t give up. Your health and well-being are important and you just have to be your own advocate sometimes. Perhaps you will be able to help others through your journey.

    Reply
  2. 2

    Katherine

    I wish someone had listened to me when I was 16. I knew something was wrong. But I was told it was in my head; it was stress; it was raging teenage hormones; no, we’re not going to waste the doctor’s time on this nonsense. Basically, suck it up, buttercup. My body was talking to me, and I wanted to listen. I thought it was dairy. It was, in part. It was also gluten. But it took another 20 years to figure that out (I’m 41 now). Talk to your doctor now about your concerns. It only gets worse when you don’t know and don’t take care of your body. My mom still thinks I’m full of s**t. Whatever. I know how to feed me and make my body thrive. I’ve never been healthier than I am today without gluten and dairy.

    Reply
    1. 2.1

      CD

      Katherine, my story is identical and I am also 41. I suffered for years, beginning in my teens, knowing that something was very wrong, but was told by everyone (doctors, parents, teachers, family, friends, etc.) that it was all in my head. When I was a teen no one ever spoke about gluten like they do now, so that never entered anyone’s minds. I went to hundreds of doctor app’s and hospital stays through the years and was never given an answer until 8 yrs ago. I suffered for 20 years thinking I must be crazy because no one believed just how sick I really was even though I got down to 95 lbs before being diagnosed. I was told to just “pull myself up by my bootstraps” by everyone I knew. It was hell on earth and I feel very fortunate to finally have a diagnosis that validates me and all that I suffered. I needed this answer desperately and it has radically changed my life for the better. Gluten Dude is right, never let anyone else ever tell you how you feel or how to take care of your body. This is your life and you must do what is best for you even if that means trying a new diet. Having your health is everything.

      Reply
      1. 2.1.1

        Ruth Millican

        Another 41 year old here. My Doctor figured it out when I was 37. As an infant the doctor told my parents I wouldn’t live to age two because I was a “seizure baby”. I was still having petite mal seizures at age 37 but not a one since going Gluten free. My migraines which I had 1/3 of the year are almost completely gone. I had a host of other symptoms as well, all gone. I currently have developed this worrisome tremor that shows up from time to time and seems to be aggravated by stress. Other than that as long as I don’t get cross contaminated I’m in great shape. I feel healthier than I ever felt before.

        Getting diagnosed at a young age would have made my life completely different. We really need to get more awareness out there for the sake of the undiagnosed and those of us who don’t have family and friends who are supportive. It’s horrible enough having to quiz the wait staff at a restaurant without having those in your company belittling you.

        Reply
        1. 2.1.1.1

          Marie

          The “petit mal” seizure hit close to home as my son’s neurologists and pediatrician suspected it for him, went through MRI trying to trigger one( sleep deprivation) which did not happen. He used to have episodes of blanking out with lips shaking. Few weeks after MRI celiac diagnosis came, he has not had an episode since going gluten free!
          On other note my brother in law has started having tremors, he is very sensitive to gluten( avoids it but still drinks a beer very other month and gets sick) and refuses to get tested for CD.
          It runs in my husband’s family but not everyone ‘ believes’ in it…like it’s a matter of faith?!

          Reply
          1. 2.1.1.1.1

            Marie

            Just to be clear, my son was diagnosed via blood test followed by biopsy( not MRI, it might have been confusing).

            Reply
    2. 2.2

      Tanya

      Do mention it. My story is also the same as both Katherine and CD. I had symptoms of Celiac Disease as a child, but my parents diagnosed me as lactose intolerant. Yes, you read that right, my parents diagnosed me. Don’t let your parents diagnose you! You are old enough, and definitely mature and articulate enough, to advocate for yourself.

      And please, let us know how it went.

      Reply
  3. 3

    KateJ

    What really doesn’t help is that she is 16. Although I had symptoms from age 7-8, it’s probably no bad thing that I was 38 when diagnosed: moved out of my parents house, and able to escape their dismissive attitude.
    Coeliac UK is an amazing resource, I understand they have a special section for teenagers.
    If the young lady concerned.is following this blog, I would suggest she contact them for advice. If it’s coeliac disease and you know, it’s sortable; if it’s not and you know, the doctor can look for other things. Either way, knowledge is good.
    My Dad still doesn’t believe, over six years in, and will call me stupid in public if I dare to ask questions before ordering in a restaurant.
    Good luck, I’m rooting for you.

    Reply
  4. 4

    margaret

    Oh this makes me so sad. I hope she gets her answers and listens to herself and not all around her.
    Hopefully the doctor isn’t an @#!$ and he does listen to her.

    Reply
  5. 5

    CR

    You absolutely should listen to your body and ask for help. No-one else is in your skin and feels what you feel. Keep asking until someone really listens to you and helps you. Don’t take “No” for an answer. Many of us had the same experience of not being listened too…we were “just getting older” or “just under a lot of stress”. It may take time but keep at it and stand up for yourself even when it’s difficult. You deserve to be healthy and happy.

    As for Celiac disease in the UK, I have spent a lot of time there and have found that more people get it there than in the US. Tesco’s, Sainsburys, and Waitrose all have gluten-free selections which are pretty good. Check out the “Free From” line at Tesco’s – the GF bread is much better than in the US and not as pricey. I’ve also had great luck at restaurants (not fast food places) but you do have to call ahead and talk to them first to make sure they actually get it and are willing to accommodate you.

    Good luck!

    Reply
  6. 6

    Rahna

    Just wanted to reach out to the young lady you suspects Coeliac disease or Gluten sensitivity. I am from the UK and after being diagnosed with Coeliac disease fairly recently I set up a website with lots of information which she might find helpful. http://www.healthyhappycoeliac.com She is welcome to email me direct if she has any questions.
    Also some friendly advice would be to consider continuing to eat gluten until you’ve had a blood test, as cutting down can affect the results. (Wish I’d known that many years ago) If blood test comes back negative and you are still concerned push for further tests- I did not test postitively on blood test but was some years later after lots of other tests finally diagnosed by repeated colonoscopy pre and post gluten free diet. Also if you suspect your issues are food related I would highly recommend keeping a food and symptom diary and keep it on you so you can show doctors. All the best, Rahna x

    Reply
  7. 7

    el Hefe

    I’m too angry to offer anything constructive.

    Reply
  8. 8

    Cathy

    Ever since I could remember I had stomach aches. My mom used to tell me that’s normal. I believed her. As I got older I asked doctors. Nothing ever showed up so they labeled me as a hypochondriac. Especially as my aches and pains got worse and spread. It took 40 years but I finally was diagnosed with CD. Please, do not allow yourself to lose so much of yourself because you were worried about asking or being made to feel it’s all in your head. I really wish 40 years of my life hadn’t been robbed. Stand up for yourself before you wind up like me….irreversible conditions, aches, pains, etc. if one doc doesn’t believe you, find another. I had to travel 600 miles to see a Celiac specialist who could help. Don’t be afraid to do that.

    Reply
    1. 8.1

      CD

      Cathy, this is the best advice. Our experiences with being ignored should finally be heard. It’s so important to stand up for yourself and when you know something is wrong, then something is definitely wrong and needs to be addressed. If a doctor dismisses me now, I find another doctor who will listen.

      Reply
      1. 8.1.1

        Cathy

        I had a doctor, probably 10 years younger than me, sit down in front of me and say “if you tell yourself you’re OK you will be OK”. I should have punched him! LOL. Instead I left in tears.

        Reply
  9. 9

    Amy

    I’d like to add to Gluten Dude’s advice with something specific for the UK.

    In the UK you do not get to choose your doctor and most doctors have no idea what coeliac disease is. Most have a check list of common symptoms and if you don’t have them they will be reluctant to test you – especially as you are young. I was 20 when I started the process in the UK and my doctor tried to blame period pain for a long time.

    The good news is that if your bloods come back negative (and you think it’s a false negative) you are entitled to ask for a retest. Unless the rules have changed in the past few years, you can ask for 3 retests and then a biopsy if you think that you have coeliac and the results are wrong.

    Don’t give up and I hope you have a good doctor!

    Reply
  10. 10

    Alessandra

    I’m a 16-year-old Celiac blogger living in the UK and would be very happy to offer any support or help! As Amy said above you are entitled to three tests plus a biopsy, and although I know how hard it is to get people to listen as a teenager, it’s so important to sort this out. Wishing you the very best, and if you ever need someone to talk to I’m here to help!

    Reply
  11. 11

    Grace

    Hi, I am in the UK and was diagnosed 8 years ago at age 20 — my symptoms also started to get particularly bad in my mid-teens.

    My advice with your GP is to be as well-prepared as possible. Go in knowing exactly what you want: the blood test. If you feel that they are being dismissive then just keep sitting there and repeating your points. Of course, I know this is easier said than done and it takes practice to advocate effectively for yourself, but this is a good time to start. Describe your symptoms, point out the probable family history, and ask for the test. If possible, it might be useful to print out some information from coeliac uk.

    Hopefully none of this will be necessary and you’ll have a super doctor. But it’s best to be prepared. I wouldn’t worry too much about your family just yet. My mum was initially dismissive, until the blood test etc actually came back positive and she started to do some more research. The fact that your grandma gave you the book is a really good sign.

    Regarding the rest of the public. Yes, many people are ignorant. I find that many have heard of coeliac disease but don’t understand that it is a real disease and not something made up by Gwyneth Paltrow. Having coeliac disease is very difficult sometimes and in ways that the vast majority of people simply don’t comprehend — particularly regarding the social aspects of it. But things are slowly improving. I have found restaurants to be considerably more accommodating since the new EU legislation came into force, and there are now a lot more places where I feel are safe to eat. Even Marks and Spencer do things like gluten free prepackaged sandwiches, so it is easier to buy food on the go.

    Reply
    1. 11.1

      Tanya

      Wonderful, positive advice here.

      It is the social aspects of being a Celiac I have the most trouble with. I don’t like talking about it at social events, but people always try to push food on me. As I’m thin, I’m sure I’m thought to have an eating disorder.

      Reply
  12. 12

    Annie

    UK gluten dodger here!

    Coeliac disease rife in my family but all 3 of my blood tests came back negative, as did my biopsy – turns out I have NCGS. My GP had no idea about it so I bombarded him with web articles and research and he was fantastic – well worth persevering!

    Should it be of further interest I’ve since published my UK-based experience in the form of: http://www.glutendodgers.com

    Best of luck to you x

    Reply
  13. 13

    Me

    Just thought I’d post to let everyone know that A) it’s my email above and B) my doctor is amazing and I’m getting bloods taken on Monday to be tested for coeliac. I didn’t even have to ask :)

    Reply
    1. 13.1

      Alessandra // the foodie teen

      Yay! I’m so, so happy about that!

      Reply
    2. 13.2

      Ruth Millican

      That is wonderful news!

      Reply
    3. 13.3

      CD

      Happy news! Good luck with the tests. Did anyone mention that you need to be eating gluten in order to have an accurate test? Anyway, wishing you all the best!

      Reply
      1. 13.3.1

        Me

        Yeah. I haven’t stopped eating gluten and don’t plan to until after the appointment and once I’ve spoken to my doctor again :) I’m so happy I didn’t have to beg and plead and then try to explain everything to him, makes it so much easier :)

        Reply
        1. 13.3.1.1

          CD

          Sounds like a really good doctor. You’re amazing and I wish I’d known what was making me sick at your age. I hope you find out soon and have a healthy happy life!

          Reply
    4. 13.4

      KateJ

      Excellent news!
      Please keep eating gluten throughout the testing process: the blood test and biopsy that they use in the UK only show a true result if you are eating gluten.
      I hope you get some answers, and start to feel better soon.
      Getting diagnosed with coeliac disease was a positive thing for me, don’t let other people’s negativity get you down.

      Reply
    5. 13.5

      Katherine

      Great! I wish you the best and hope you get the answers you need! :-)

      Reply
  14. 14

    Brandi

    Coeliac UK is an amazing organisation. Contact them.

    Reply

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