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Newly Diagnosed

SMRI

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SMRI Collaborator
SMRI
Posted

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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SMRI Collaborator
SMRI
Posted
  • Author

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
GottaSki
Posted

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
LauraTX
Posted

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
SMRI
Posted
  • Author

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

      By trents · Posted

      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
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