Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Officially diagnosed today


jennlove

Recommended Posts

jennlove Rookie

Hello!  I wanted to introduce myself and tell my journey to diagnosis to people who would understand.  My name is Jennifer and today, my doctor called to tell me my endoscopy biopsy confirmed celiac disease.  Today was also my first gluten free day.  My sister and I have combed through every gluten free section of every grocery in town lol. 
 

So about ten years ago, I went to the ER with terrible pain in my upper right abdomen.  I’ve been referring to it as my mystery side pain ever since.  I had a CT scan and I remember the ER doctor saying, your white blood cells are up so you have something but we don’t know what.  I had a gallbladder scan, bloodwork, more imaging.  Nothing.  The doctors just kinda went ¯\_(ツ)_/¯.  Every so often I’d again ask about the pain but was just giving acid reflux medicine.  I should mention I’m fat and I think I was diagnosed as “fat probs.”  
 

Earlier this year I had a terrible episode of side pain and diarrhea except this time it progressed to nausea too.  I almost threw up so I thought, ugh let’s try this again.  My PCP, who had not been confronted with this yet so she hadn’t dismissed me yet, sent me to a gastro doc she knew in medical school.  First visit, he redoes my gallbladder scan since it had been 6 years ago.  He does bloodwork.  Second visit, nothing shows up but he <hears> me say I get sick when I eat.  He <heard> me and immediately suggested a celiac antibodies blood test as well as some other tests.  
 

I really didn’t expect the test to come back positive.  I thought it was…I don’t know.  Maybe I was crazy and would never have any answer for this pain.  
 
But my antibodies came back 34.85 on a 0-4.99 is normal scale.  He called me himself at 7:45PM to tell me about the results.  He ordered an urgent endoscopy which I had 3 days later.  This guy is my superhero.  He also said when I got to the hospital that he was going to “see if my gut looks like an ice skating rink” lmao.

Apparently it did.  The results confirmed the bloodwork and now I have a new normal.  But I also have an answer and hope of relief.  I feel like that episode of the Golden Girls where Dorothy finds out she has chronic fatigue symptoms after her doctors kept dismissing her.  I don’t want a disease but at least I have understanding now and a way to begin healing.  
 

The timing is great by the way.  Vacation out of state next week hah.  I’m taking a load of gluten-free snacks and reading up on local restaurants.   My sister has been a rockstar.  I live with her and she cooks most of our food.  She’s thrown out everything gluten and is going to replace all the wooden cookware.  Tonight she made gluten-free cornbread for us.  I’d be lost without her help.  
 

Anyway I guess I wanted to record how I feel and share it with others who have the condition.  Here’s to healing!  


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the forum, @jennlove! The sense of relief you are experiencing is palpable in your narrative. I just want to make you aware that there is somewhere between a 10% and almost a 50% chance that your first degree relatives have or will develop active celiac disease. First degree relatives are defined as parents, siblings and offspring. Older studies pegged the likelihood at about 10% but a couple of newer and larger studies (one by the Mayo Clinic) found the likelihood to be well over 40% when they actually tested the first degree relatives of those having been diagnosed with celiac disease by biopsy. Many of most of them were very much caught by surprise because they were no experiencing classic symptoms. We now know that many celiacs are the "silent" type. That is, they are largely asymptomatic for years until the damage to the villous lining of the small bowel becomes severe. So, you might want to encourage your first degree relatives to at least get the blood antibody testing done.

jennlove Rookie
8 hours ago, trents said:

Welcome to the forum, @jennlove! The sense of relief you are experiencing is palpable in your narrative. I just want to make you aware that there is somewhere between a 10% and almost a 50% chance that your first degree relatives have or will develop active celiac disease. First degree relatives are defined as parents, siblings and offspring. Older studies pegged the likelihood at about 10% but a couple of newer and larger studies (one by the Mayo Clinic) found the likelihood to be well over 40% when they actually tested the first degree relatives of those having been diagnosed with celiac disease by biopsy. Many of most of them were very much caught by surprise because they were no experiencing classic symptoms. We now know that many celiacs are the "silent" type. That is, they are largely asymptomatic for years until the damage to the villous lining of the small bowel becomes severe. So, you might want to encourage your first degree relatives to at least get the blood antibody testing done.

Don’t get me wrong, I’m also blown away by hard much change I need to make lol.  But yes I’m relieved it’s something and I’m not crazy!  Thanks for the tip, we had read the same thing here and there so my sister is getting the blood test today.  I’ll work on my other relatives to encourage them to get tested too!

trents Grand Master

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,778
    • Most Online (within 30 mins)
      7,748

    Waterlili
    Newest Member
    Waterlili
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Resada
      Yeah, that one is always hard, especially since life seems to revolve around food. That happened to me 2 weeks ago with hibachi and with Hungarian hot dogs. I used to be more picky, but now I would love to try all the things if I could. On the bright side, my husband is absolutely wonderful with it, and his mom often brings a few certified gluten-free things to family get-togethers just for me (and tries to make sure main dishes are safe too). Having the people closest to you be supportive can make a huge difference. 
    • trents
      I hear you. My extended family is very good about factoring in my celiac disease safety needs when making family celebration meal plans but sometimes it breaks down in the spur of the moment decisions to "Oh, let's go out and get some teriyaki" or the like. Especially when my brother in law comes into town 'cause he's pretty particular about what he likes to eat. So, sometimes I just say, "You guys go ahead without me. I'll find some leftovers." But, still, I admit to feeling a little left out at such times and a little like a 5th wheel.
    • Resada
      Same, and I appreciate your comments. I just needed to get it off my chest. Sometimes, even when its a genuine mistake, it can feel all too hurtful and I didn't want to go back to work tomorrow still in my feelings. 
    • trents
      Yes, probably slipped his mind. Grace is in order here is my thought.
    • Resada
      I should have added that, while I dont have access during the meetings, I do as soon as I leave them (same for him) so I would have seen before I even left work. He has my number since we've needed to coordinate by cell a few times for work and other stuff. I usually have a protein bar or two in my desk for emergencies so I could have grabbed one of those and gone to meet them at the right restaurant.  Someone else decided on the change of restaurant and it must have slipped his mind that I wasn't coming back to my desk.
×
×
  • Create New...