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Newly Diagnosed


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I was diagnosed a couple weeks ago with Celiac so I'm starting my journey with this new life :D.  My test results were :

 

Open Original Shared Link  32.2  >10 being positive

 

Open Original Shared Link 66.5  >30 positive

 

Open Original Shared Link 17.6  >9 positive

 

Open Original Shared Link  23.5  with <20 being positive

 

my biopsy was also positive and I have the genetic pairs so it's a pretty sure thing I guess.

 

So, I go back to the doctor at the end of the month to meet with the GI Celiac team and was told to not stop Gluten until I see them...so, I'm eating all the stuff I love that I won't be able to eat :D.  I'm here to just absorb information and learn about this new way of life.  I bought my first real gluten free food today to try-it was on sale at the grocery store!

 

So, hello to all and I look forward to getting to know everyone here!


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That question is high on my list of questions to ask when I go back.  Everyone here talks about being "glutened" and having reactions right away, will that happen to me, who is fairly symptom free other then bathroom issues, but, after I totally cut out gluten, will the reactions come harder???  I'm also looking forward to the holiday season and if I have a cookie or two after being gluten-free until then, what happens? I am sure everyone is different but I don't run to the bathroom now every time I eat something with gluten so who knows :D.

GottaSki Mentor

Hello!

And Welcome!

Take a look around and let us know how we can help your transition :)

Here is a great start:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

LauraTX Rising Star

Welcome to the Silly Yak Club!  Usually with a solid celiac diagnosis, which it seems like you have, they tell you to go gluten-free right away.  Better to follow what was told to you in case they want to do further testing, though.  You can take this time to learn and ease into the gluten-free lifestyle, and once you get the order, it is strictly gluten-free from then on!  We have a great bunch of people here with a lot of helpful ideas, so please feel free to ask anything!  If you read a post that has whether or not something is gluten-free on it, pay attention to the date because this forum has been around a long time,and products can change over time.

SMRI Collaborator

Welcome to the Silly Yak Club!  Usually with a solid celiac diagnosis, which it seems like you have, they tell you to go gluten-free right away.  Better to follow what was told to you in case they want to do further testing, though.  You can take this time to learn and ease into the gluten-free lifestyle, and once you get the order, it is strictly gluten-free from then on!  We have a great bunch of people here with a lot of helpful ideas, so please feel free to ask anything!  If you read a post that has whether or not something is gluten-free on it, pay attention to the date because this forum has been around a long time,and products can change over time.

 

I think they wanted me to wait because there is one doctor doing a study and maybe some further tests???  He is doing a genetic study I think and I was originally tested because I have a relative with Celiac and had a few symptoms, mainly fatigue and bathroom issues :D.  I haven't met with the GI team yet either so some of that scheduling was due to my schedule too.  I have a few other things going on that they are looking at as well and I'm on a restricted calorie diet so that pretty much eliminates a lot of Gluten products, breads, pasta, etc., because of the calorie count.

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    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
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    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
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