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Hi! After having bad gerd/indigestion/diarrhea I was tested for celiac via ttg Iga blood test. It was 590 😬 I don’t eat a lot of gluten so was surprised at the high result. I’m awaiting my endoscopy with biopsy to confirm diagnosis of celiac.

Is that number high for a relatively low gluten diet? Is there a chance it’s something else?

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You most likely have celiac disease.  That number is very high (I think, but not sure the lab ranges were not provided).  My lab does not measure above 200 and the cut-off is 20.  Your result does not determine small intestinal damage accurately.  This why an endoscopy is important.  Your endoscopy and biopsy results will provide a benchmark for future measurement.  Keep consuming gluten until all your testing is done.  This is critical!  When is your appointment?  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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4 hours ago, cyclinglady said:

You most likely have celiac disease.  That number is very high (I think, but not sure the lab ranges were not provided).  My lab does not measure above 200 and the cut-off is 20.  Your result does not determine small intestinal damage accurately.  This why an endoscopy is important.  Your endoscopy and biopsy results will provide a benchmark for future measurement.  Keep consuming gluten until all your testing is done.  This is critical!  When is your appointment?  

The lab range was greater than 20 and said moderate to strong positive. My appointment is 8/4 so about two weeks of forcing gluten down. I’ll enjoy it while I can! Thank you for the reply.

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Take this time  to eat all your favorite foods.  That is what I did.  I literally ate a loaf of sourdough bread a day.  I made cakes and cookies.  I bought cakes and cookies.  I ate donuts.  And I handed out my opened packages to my friends and neighbors (I did not eat entire packages).  By the time my endoscopy rolled around, I knew, without a doubt that gluten was not for me anymore.  No regrets going gluten free.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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7 minutes ago, cyclinglady said:

Take this time  to eat all your favorite foods.  That is what I did.  I literally ate a loaf of sourdough bread a day.  I made cakes and cookies.  I bought cakes and cookies.  I ate donuts.  And I handed out my opened packages to my friends and neighbors (I did not eat entire packages).  By the time my endoscopy rolled around, I knew, without a doubt that gluten was not for me anymore.  No regrets going gluten free.  

Yes! I was researching candy today and I will be enjoying Twix and Kit Kat’s during this time. Oreos too. If I have to eat gluten and feel like crap I may as well enjoy it. I eat less gluten than most so I’m well positioned for this. Overall, I’m looking forward to eliminating and feeling better. 

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14 hours ago, Shecouldeat said:

Hi! After having bad gerd/indigestion/diarrhea I was tested for celiac via ttg Iga blood test. It was 590 😬 I don’t eat a lot of gluten so was surprised at the high result. I’m awaiting my endoscopy with biopsy to confirm diagnosis of celiac.

Is that number high for a relatively low gluten diet? Is there a chance it’s something else?

I'm not a dr. but I think blood test numbers measure the body's sensitivity and immune system response to G exposure (the level of G antibodies in the blood), not how much G you regularly eat.  You can just occasionally eat G but your body can respond by producing a lot of antibodies (result in higher numbers).  Conversely, you can eat a lot of G and have low blood test numbers.  At least that's how it was explained to me.   Also, don't feel bad about your numbers; I have heard of people having numbers in the thousands.  My initial ttg test showed 224; my latest test showed 73 (after starting gluten-free diet 6 months ago).  So these test numbers do quickly start to decline on gluten-free diets and should be close to normal range within a year (assuming no accidental G exposure or intentional "cheating" on gluten-free diet).

The important thing is knowing you will soon learn how to proactively prove/protect your health by ditching G from your diet (assuming you are diagnosed with Celiac).  Also, don't be surprised if your EGD/biopsy is negative/normal.  Mine was.  Doc said I have "likely/probable" Celiac and put me on a gluten-free diet to be on the safe side.

If you have to go gluten-free, be sure to quickly educate yourself about how to avoid "hidden" G sources in foods and other products (even meds).  They are everywhere, esp. in most packaged, commercially-sold foods, even those labeled gluten-free.   Your doc and a good dietician can help with your learning curve.  The easiest, simplest way for me has been to avoid all G by just adopting an exclusively fresh food diet (only fresh meats, fruits, veggies) that can be easily cooked at home.  

 

 

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10 hours ago, Kate333 said:

I'm not a dr. but I think blood test numbers measure the body's sensitivity and immune system response to G exposure (the level of G antibodies in the blood), not how much G you regularly eat.  You can just occasionally eat G but your body can respond by producing a lot of antibodies (result in higher numbers).  Conversely, you can eat a lot of G and have low blood test numbers.  At least that's how it was explained to me.   Also, don't feel bad about your numbers; I have heard of people having numbers in the thousands.  My initial ttg test showed 224; my latest test showed 73 (after starting gluten-free diet 6 months ago).  So these test numbers do quickly start to decline on gluten-free diets and should be close to normal range within a year (assuming no accidental G exposure or intentional "cheating" on gluten-free diet).

The important thing is knowing you will soon learn how to proactively prove/protect your health by ditching G from your diet (assuming you are diagnosed with Celiac).  Also, don't be surprised if your EGD/biopsy is negative/normal.  Mine was.  Doc said I have "likely/probable" Celiac and put me on a gluten-free diet to be on the safe side.

If you have to go gluten-free, be sure to quickly educate yourself about how to avoid "hidden" G sources in foods and other products (even meds).  They are everywhere, esp. in most packaged, commercially-sold foods, even those labeled gluten-free.   Your doc and a good dietician can help with your learning curve.  The easiest, simplest way for me has been to avoid all G by just adopting an exclusively fresh food diet (only fresh meats, fruits, veggies) that can be easily cooked at home.  

 

 

Thank you for the insight!  I have been wondering about my high number so it's comforting to know that they can decline and I am not the only one. I of course am wondering how long I have had it (assuming I do) and looking back at times in my life where I had stomach issues etc. I am hoping the damage is minimal and looking forward to healing. This forum is great. Thanks again.

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8 hours ago, Shecouldeat said:

Thank you for the insight!  I have been wondering about my high number so it's comforting to know that they can decline and I am not the only one. I of course am wondering how long I have had it (assuming I do) and looking back at times in my life where I had stomach issues etc. I am hoping the damage is minimal and looking forward to healing. This forum is great. Thanks again.

You're welcome.  I was only diagnosed 6 months ago but I remember, like you, feeling surprised and upset.  I had never even heard of celiac disease before.  I was also honestly angry and confused at many of my prev. docs--esp. GI specialists who just focused on symptoms, not finding out the cause, and kept prescribing acid suppressing meds like candy whenever I complained of indigestion issues.  Yet they never thought enough to run a simple, fairly inexpensive blood test which may have revealed the cause years earlier and averted needless suffering and damage. 

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