Worried Mom having an emotional night

[missingno 0]

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

[MitziG 95]

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 29]

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

[tom 76]

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 0]

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? 0]

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.