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
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.