Jump to content
Frequently Asked Questions About Celiac Disease Read more... ×
  • Sign Up
2 2
Corb

Diagnosed without endoscopy

Rate this topic

Recommended Posts

Hi, was just diagnosed today with celiac based on ttg level of 128. Was told endoscopy and biopsy wasn't necessary as doctor said it was 95% the case they would confirm celiac. Am wondering if I should proceed and get the biopsy. I have not had any terrible symptoms, have just been low iron. Anyone else diagnosed just on bloodwork? 

I read online that onset could be induced by extreme stress. Has anyone ever heard of a false diagnosis? If stress reduces could the symptoms?

Am finding it hard to believe/accept this diagnosis. 

Share this post


Link to post
Share on other sites

Well, the "gold standard" of diagnosing for celiac disease is still biopsies via endoscopy.  However, there are exceptions for many reasons.  For some, it can take up to a year to get an endoscopy due to health insurance/provider constraints and they just want to get well.   For others, it can be out of their budget, while others just simply do not want to do the procedure.  

Your TTG is very high (assuming the cut-off is less than 20).  Some other Illnesses could raise it, but not that much (usually if you have another autoimmune disorder).  I can believe your shock.  I had one positive on the celiac panel and just suffered from anemia.  No GI issues.  I personally needed the endoscopy because I knew exactly what the diet meant (hubby had been gluten-free for 12 years) but I have good insurance and the wait was 7 weeks (that was due to my work constraints and not my doctor).  

Maybe your doctor can run the rest of the celiac panel and/or a gene test to help convince you.  

Celiac disease is genetic.  Researchers think that some kind of physical stress can set off celiac disease (illness, pregnancy, etc.) They are not sure.  A false diagnosis is possible.  Your doctor did not say 100%, did he?  

Only you can decide what is best for you.  

Share this post


Link to post
Share on other sites

If you are going to doubt your diagnosis then I would certainly push for the doc ordering the entire celiac blood panel --- your insurance may require that to be ordered by a GI -- just depends on your particular insurance. After that, if you still are doubtful, then go to a GI & push for an endoscopic biopsy. You MUST continue eating gluten every day until all testing is finished otherwise you can get false negatives. The diet is challenging, at least at first, therefore if you are going to have trouble staying on the diet strictly then you need to make sure you do not doubt the diagnosis.

There are over 200 symptoms associated with celiac disease, it is not just diarrhea. In fact, over 50% of diagnosed celiacs did NOT present with any GI symptoms.

Share this post


Link to post
Share on other sites

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
2 2

×