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Tko2341

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Tko2341 Rookie

Hi. My dr said I tested positive for Celiac Disease though a blood test. They didn’t say to have an endoscopy or any further testing. What I read says you need that to be certain. They also didn’t suggest a follow up appointment. Just said to stay away from gluten.  Do my results make it absolute that I have it? Should I still see a gastroenterologist to assess the damage to my intestines?   IGA says positive  Gliadin Iga Ab says 69.9 and Tis.Transglut Ab Iga says 100.8. 


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ch88 Collaborator

I am not very familiar with celiac test numbers. I think you are right, though about needing a biopsy to know for sure if you are celiac or not. 

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squirmingitch Veteran

We would need the ranges on those lab #'s b/c not all labs have the same #'s. However, however, however, generally, normal lab #'s don't get any where near what you posted so yes, it does look like you're way over the top. Another however, the gold standard is positive blood work PLUS  positive endoscopic biopsy. You need to call your doc & ask if he/she has referred you to a gastroenterologist. You need to keep eating gluten every single day until the endoscopy is done. You don't need to eat more than a cracker or 2 or a single slice of bread but you do need to have it every day. 

lisas11lisa Apprentice

The main thing is getting with a Gastroenterologist asap....Yes..they will do ur scope..(U need to be monitored and tested regularly)..there was issues with my insurance at my initial diagnosis..and they wouldn't approve one..so I wouldn't go back on gluten to have it done later..just had one 6 years gluten-free..and they r saying NO SIGN OF Celiac Disease..I know I have it and will NEVER GO BACK TO EATING GLUTEN..Research everything!..and always always ck labels...Goodluck.

cyclinglady Grand Master

You are correct.  All celiac centers in the U.S. still recommend a biopsy to diagnosis celiac disease, in addition to the celiac antibodies blood tests.  There are a few exceptions.   Share these links with your PCP if he/she is refusing to refer you to a Gastroenterologist.  Document.  If your PCP is not supportive, get a new one.  If he can not google how to diagnose celiac disease, then he/she might miss some other critical diagnosis — like cancer!  

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Why get a biopsy? Because your GI can not only identify damaged villi, but can rule out other GI issues or identify ones in addition to celiac disease.  You can have more than one issue (e.g. Crohn’s, H. Plyori, ulcers, cancer, etc.)  An endoscopy will give you a baseline.  Take me for instance.  My original endoscopy confirmed celiac disease.  I was having problems this year.  Had another endoscopy.  My small intestine healed, but now I have chronic gastritis which I did not have before.  I thought my source of my current symptoms was due to celiac disease but it was not.  A baseline is important!  

 

cyclinglady Grand Master
3 hours ago, lisas11lisa said:

The main thing is getting with a Gastroenterologist asap....Yes..they will do ur scope..(U need to be monitored and tested regularly)..there was issues with my insurance at my initial diagnosis..and they wouldn't approve one..so I wouldn't go back on gluten to have it done later..just had one 6 years gluten-free..and they r saying NO SIGN OF Celiac Disease..I know I have it and will NEVER GO BACK TO EATING GLUTEN..Research everything!..and always always ck labels...Goodluck.

Lisa,

Congratulations on a healing from celiac disease.  I am so sorry that your doctors now may not believe your initial diagnosis!  My comments are not directed to you, but to others who might be in the same boat.  Document!  Maintain and keep all your medical records.  I changed medical providers a few years back.   When I had my first visit, I presented my PCP and GI with a print out of my endoscopy notes and laboratory records going back many years.  This eliminated the need to retest and no doctor has doubted me.  My hubby went Gluten Free 17 years ago per the poor advice of his PCP and my allergist.  Well, it worked, but now they look at him as if he was a gluten free celebrity nut!  Not really, but you wonder if they really believe him.  I think his doctors do, because I am there to insist that he has a gluten sensitivity and that it is too bad there is not a test developed yet if you have been on a gluten free diet for decades.   

Again, Lisa!  Congratulations!  

 

Gemini Experienced
19 hours ago, Tko2341 said:

Hi. My dr said I tested positive for Celiac Disease though a blood test. They didn’t say to have an endoscopy or any further testing. What I read says you need that to be certain. They also didn’t suggest a follow up appointment. Just said to stay away from gluten.  Do my results make it absolute that I have it? Should I still see a gastroenterologist to assess the damage to my intestines?   IGA says positive  Gliadin Iga Ab says 69.9 and Tis.Transglut Ab Iga says 100.8. 

Those figures are very high and strongly point to Celiac.  If your doctor had done a full Celiac panel and the rest of the testing came back positive, then you wouldn't need a biopsy for diagnosis but to check on level of damage.  But they did not do a full panel so if you need more convincing than what they have done, you would progress to a biopsy.  You need to find someone who actually knows this.  Find a good GI so they can make sure you get a definitive diagnosis but it looks like you do have it.  Good luck!


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ravenwoodglass Mentor
7 hours ago, lisas11lisa said:

..just had one 6 years gluten-free..and they r saying NO SIGN OF Celiac Disease..I know I have it and will NEVER GO BACK TO EATING GLUTEN..

That means you healed. That's good. Did you ask the doctor to clarify what they meant? My GI said the same thing to me but then told me I was doing a good job on the diet. I still have Celiac as a diagnosis on my record.  If you had testing and blood work was positive check your records and make sure that celiac is noted and ask your GP why not if it isn't.

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