Advice on celiac testing?

[alyssa-w94]

Hi there! I need some advice. I have been on a gluten free diet for four years since my previous doctor suggested I do an elimination diet for my stomach issues. I had dealt with frequent nausea, abdominal cramps, heartburn, diarrhea, fatigue, and iron-deficient anemia since I was a young child. I eliminated gluten and quickly stopped experiencing those symptoms and my iron levels rose to a normal level. My doctor never did any kind of test for celiac but suggested I continue to eat a strict gluten-free diet.
Recently, I have been experiencing a lot of heartburn, acid reflux, nausea, constipation, diarrhea, and bloating. I went to a gastroenterologist he did an upper endoscopy and didn't find anything. He is insisting that I take the gluten-antibody blood test before he continues treatment. He wants to know if I actually have celiac disease. He said for the test that I have to eat moderate amounts of gluten for a week before the test. I am extremely nervous about getting the blood work done because I have a horrible reaction when I have accidentally had gluten (nausea, abdominal cramps, diarrhea, bloating, and fatigue). I also am confused by what I have read about the antibody test and whether or not a week of gluten will even cause the antibodies to show up on the test. I don't want to take it and don't see the purpose but am afraid that he will not continue to treat me if I don't get the blood work done. I wish I had known this test existed when I first stopped eating gluten!
Anyone have any advice?

[kareng]

8 hours ago, alyssa_w94 said:

Hi there! I need some advice. I have been on a gluten free diet for four years since my previous doctor suggested I do an elimination diet for my stomach issues. I had dealt with frequent nausea, abdominal cramps, heartburn, diarrhea, fatigue, and iron-deficient anemia since I was a young child. I eliminated gluten and quickly stopped experiencing those symptoms and my iron levels rose to a normal level. My doctor never did any kind of test for celiac but suggested I continue to eat a strict gluten-free diet.
Recently, I have been experiencing a lot of heartburn, acid reflux, nausea, constipation, diarrhea, and bloating. I went to a gastroenterologist he did an upper endoscopy and didn't find anything. He is insisting that I take the gluten-antibody blood test before he continues treatment. He wants to know if I actually have celiac disease. He said for the test that I have to eat moderate amounts of gluten for a week before the test. I am extremely nervous about getting the blood work done because I have a horrible reaction when I have accidentally had gluten (nausea, abdominal cramps, diarrhea, bloating, and fatigue). I also am confused by what I have read about the antibody test and whether or not a week of gluten will even cause the antibodies to show up on the test. I don't want to take it and don't see the purpose but am afraid that he will not continue to treat me if I don't get the blood work done. I wish I had known this test existed when I first stopped eating gluten!
Anyone have any advice?

 

I get the feeling this GI doesn't think you have Celiac and wants to " prove it" to you?  If he really thought you had Celiac, you would need a much longer gluten challenge.  I think I would say " I eat strictly gluten-free, if I have Celiac, that would not be the current problem.  Find out what is really the problem"

If you decide to keep this doctor, you can show him this link to other doctors who are Celiac experts

Open Original Shared Link

[alyssa-w94]

2 hours ago, kareng said:

 

I get the feeling this GI doesn't think you have Celiac and wants to " prove it" to you?  If he really thought you had Celiac, you would need a much longer gluten challenge.  I think I would say " I eat strictly gluten-free, if I have Celiac, that would not be the current problem.  Find out what is really the problem"

If you decide to keep this doctor, you can show him this link to other doctors who are Celiac experts

Open Original Shared Link

 Thanks so much! I agree with you, I think he's trying to maybe prove I don't? Which is irrelevant and is just setting me back on finding the real answer.

[cyclinglady]

I completely understand your hesitation about testing for celiac disease if it means consuming gluten.  My hubby went Gluten Free 12 years prior to my celiac disease diagnosis per the poor advice of two doctors.  The diet worked.  Now, no one knows if he has celiac disease or even NCGI and he will NEVER do a challenge to find out.  Consuming gluten will make it too hard for him to work and frankly, we like eating and feel duty-bound to pay our bills.  

Karen is right about the challenge.  But think about just getting the test anyway without consuming gluten.  If negative, you should investigate other issues like Crohn's.  If positive, you might have been Glutened and he missed areas of damage.  How many tissue samples  did he take anyway?  

My niece tested negative on all celiac tests a few times.  Both a colonoscopy and an endoscopy revealed nothing, however, a pill camera did reveal Crohn's damage located at just the lower end of her small intestine.  It was severe, yet she did not display typical Crohn's symptoms.  I am not saying you have Crohn's, but that you should never stop advocating for yourself.  Something is wrong!  

Then find a new GI.  Your current one is not celiac-savvy (nor does he keep up by reading medical journals or following algorithms specified by the American GI Association).  This alone tells me to fire him!  My neighbor  is an ER doctor.  He does not know everything, but he says a good doctor will do the research.