Various Tests Done So Is Biopsy A Must?

[GlutenFreeBuddy]

Hello everyone,

 

I found out I have celiac disease completely by accident. I had a lifetime of digestive issues but never put it together. My doctor initially ran blood work labs and my celiac antibodies were very elevated. I then went to a specialist who ran more blood work and found that I am low on various vitamins. I also had the genetic testing done and this returned positive. I've been gluten free for 6 weeks and feel better this way. My doctor is still pushing that I do the endoscopy to complete the biopsy. My gut (no pun intended!) is telling me that this test is not worth the stress it will be on my body and especially not worth going back on gluten...especially if there are so many false negatives with it. I don't see the benefits of putting myself through it as I already have so many indicators that this in fact is Celiac. Please share your opinions/thoughts!

 

Thank you!

[bartfull]

Some people feel they need the biopsy (the "gold standard" for diagnosing celiac) in order to comply fully with the diet. Others need it so they can get a doctor's note for school or airline trips or so they can bring their own food to places that don't allow outside food.

 

If you don't feel you need any of those things, by all means go gluten-free and don't look back. The only thing that might make a difference on would be if you are hospitalized or in a nursing home at some time in the future.

[cyclinglady]

Everything Bart said!

I personally needed the biopsy. I wanted a benchmark for damage plus, I needed the firm diagnosis in order for me to be dietary compliant. I could not believe that both my husband and I needed to be gluten free. He has been gluten-free for 14 years now, so I knew exactly what it meant! My daughter's doctor did not hesitate to test her despite that she was symptom free. My doctor ordered labs and bone scans because of my diagnosis.

It would be nice to see if your doctor would be willing to give you a celiac disease diagnosis in your chart. Some doctors do refuse.

It is your choice! I wish you well!

[nvsmom]

I'm one who skipped the biopsy.  I had undeniably positive tTG IgA and EMA IgA, and my symptoms and family history supported a celiac disease diagnosis.  My doctor said I could pursue the endoscopy but he was comfortable diagnosing celiac disease.  

 

If you are happy to go gluten-free now, and your doctor is willing to diagnose celiac disease based on your blood tests, I would say you may as well go gluten-free now.  If he won't give you a diagnosis of celiac disease without the biopsy, I would consider doing it if you foresee the need for dietary accommodations in the future (at a college dorm, or in a hospital).  You could always doctor shop for one who is willing to diagnose it based on your blood tests.

 

The gluten challenge is usually 2-4 weeks, of 1/2 to 4 slices of bread per day (1 slice is the norm), for the endoscopic biopsy.  If you do get it done, ensure at least 6 samples are taken.

 

Best wishes in whatever you decide to do.

[jbeilfuss]

I suppose this is a personal decision more than anything.  I am new here and am still in the process of getting diagnosed and I have my biopsy this Thursday.  I suppose mostly I wanted to just know for sure in spite of getting two positive blood tests (not terribly high on the tTG IGA, but over the limit for sure; my DGP was just over three times the upper "normal" limit.

 

I stopped eating gluten just less than two weeks prior to getting the blood draw, so my GI doctor wanted me to eat gluten containing foods for 8 weeks before the biopsy and I have definitely had some rough days in there.  But it's almost here now and I will be glad to know if they see any damage down there. 

[nvsmom]

...I stopped eating gluten just less than two weeks prior to getting the blood draw, so my GI doctor wanted me to eat gluten containing foods for 8 weeks before the biopsy and I have definitely had some rough days in there.  But it's almost here now and I will be glad to know if they see any damage down there. 

 

Eight weeks is a long gluten challenge for the biopsy.  Most doctors go with two to four weeks, with a few going with six.  Because yours is so long, you can probably eat the minimum amounts of gluten needed - don't overdo it and make yourself sicker than needed.

 

Most doctors ask for 1/2 to 4 slices of bread (or equivalent) be eaten per day.  I think you could probably go with the 1/2 to 1 slice per day, but if you are worried about getting a false negative, and since you are close to the procedure date, you may want to stay the course.  Just make sure they take at least 6 samples when they are in there - false negatives happen more often when 4 or fewer samples are taken.

 

Hang in there.