Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New & Recently Diagnosed, Sharing Story.

missingno

Recommended Posts

missingno Newbie
missingno
Posted

Hi everyone,

I'm new here (despite posting once before before I was diagnosed) and so appologies if this is in the wrong place.

I'm a 22 year old from the UK and have recently (after about a decade of going back and forth the doctors) been diagnosed with Celiac/coeliac disease. I am eager to meet fellow celiacs, and as an ice breaker I thought I would share my story with you all.

I've had stomach problems ever since I can remember. My parents described me as a baby who was constantly throwing up, and often had terrible bouts of colic. As a child, I often wasn't able to participate fully in anything athletic, as I felt like I was carrying a lead weight around in my stomach, constantly bloated. This continued into my teens, and frequent visits to many different doctors always came back with the same thing: IBS, stress etc. Then I moved away from home to go to college, and I became very ill, unable to eat anything without vomiting, terrible GERD & crippling stomach cramps (which I had always had on and off but they became more intense and prolonged) as well as bouts of extreme constipation (twice leading to hospitalisation for impaction leading to obstruction)and sometimes severe diarhoea, and the usual bloating. I visited the doctors on several occasions, a few times doubled over in pain and hardly able to walk. My doctor told me it was IBS/acid reflux/ a stomach infection/ Stress (I was even sent on a course to manage anxiety) and I was sent packing. I asked about celiac disease and she took one look at me ( I was slightly overweight at that time, although looked worse because of the bloating) and said ' no way I do not believe that you have celiacs as you are not malnourished.' However on that occasion she took bloodwork from me to check my liver and gall bladder function, but not for celiacs. My bloodwork came back and showed that I was deficient in a lot of vitamins and very anaemic. I was put on supplements, the official diagnosis still being IBS. I continued on for a year, still with terrible pain and unable to do hardly anything, when I went back to the doctors, basically crying that the pain was ruining my life. I got to such a low point that I didnt see the point of doing anything anymore. I had completed my undergraduate degree and enrolled onto Masters degree, however i felt that my health was so bad, I wanted to withdraw study. I was constantly ill in work. I was fed up of people dismissing me, as if I was overreacting to the pain I was in. I got to see a different doctor, and he was fantastic. For the first time I felt as though someone was listening to me, and I asked about celiac's again. He Thought it sounded very plausible, and sent my bloodwork away. Unfortunatley it came back negative, and I was sent for a variety of scans and tests to check for other conditions. When they all also came back negative, I was sent to a gastroenterologist for a biopsy, and it was confirmed that I had celiacs. I have been gluten free (exept for accidents as I am still learing) for 8 months now, and honestly I feel like a brand new person. I am able to study to my fullest potential and have lost almost 2 stone of weight and feel fantastic. I am able to hike, swm and do all the other things I loved but werent able to do when I was ill, and I keep getting better every day. My dry skin/rash on my knees has cleared up after 4 years, my hair doesnt fall out or snap, neither do my nails. Everyone who sees me remarks on how well I look. and I feel it! The diagnosis is honestly the best thing thats ever happened to me, I know that sounds weird to be glad to have a disease, but now I know how to manage it, and live my life the way I want to.

So thats my story, I look forward to getting to know you all!

Missingno :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

Congratulations and welcome! I know many of us here can relate to your story and have been misdiagnosed for years. I too look at being dx as a blessing- for the first time in my life I know what it is like to feel well! You will find a lot of valuable information here, and we look forward to hearing more from you!

justlisa Apprentice
justlisa
Posted

Hi Missingno! I am very happy for you...

tom Contributor
tom
Posted

That's fantastic missingno(wheat)!

Glad they went ahead w/ the endoscopy despite neg blood.

You'd been eating regular the whole time through testing, I take it?

missingno Newbie
missingno
Posted
  • Author

That's fantastic missingno(wheat)!

Glad they went ahead w/ the endoscopy despite neg blood.

You'd been eating regular the whole time through testing, I take it?

Hi everyone, thanks for the welcome!

Tom yes I just ate my regular diet. I was told that I couldnt go gluten-free until after the endoscopy, which was a bit frustrating as I had to wait quite a while for a date, but worth it in the end :)

Really? Newbie
Really?
Posted

Wonderful news on your feeling so much better and getting on with your life... congrats to you! Thanks for sharing your journey. I hope you continue to experience those things in life you weren't able to do before and continue to feel healthy.

I am new to the forum as well... I was just diagnosed with Celiacs in June 2012. I hope that one day I can tell a similar story of good news and health such as yourself. Unfortunately right now... I seem to be more sick on the gluten free diet than I was before I knew what was wrong with me.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,110
    • Most Online (within 30 mins)
      7,748
    JD Payton
    Newest Member
    JD Payton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      Insomnia help

      By cristiana · Posted

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      nothing has changed

      By wellthatsfun · Posted

      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.