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Small Bowel Biopsy--have to eat gluten again

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Celiac Disease
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Posted 4/7/2011 11:52 AM (GMT -7)
 

I had the Celiac blood test last year that was positive. I opted not to do the small bowel biopsy and instead just went gluten-free. Immediately I felt better. I've  been gluten-free for 10 months. Recently I was undergoing testing for what my GI thought was Crohn's, but the colonoscopy biopsy didn't show anything. My GI now wants to do the small bowel biopsy for Celiac's, along with the small bowel barium xray for Crohn's. 

Bottom line is I have to start eating gluten again for the next week and a half, which is how long he thinks it'll take for the Celiac's to show in my body. I'm completely terrified to eating gluten again, because I know how awful I'm going to feel. Is there anyway to limit how sick I'll get with the gluten, while still getting a result for the biopsy? If I just eat gluten at dinner, in the comfort of my own home, would that prevent me from getting sick the next day at work? 

Posted 4/7/2011 5:48 PM (GMT -7)
Everyone is different in their reaction to gluten. I feel the effects for at least a week with even a mild glutening.

Did your GI insist on the gluten challenge? Perhaps you should discuss your concerns with him and see if he would do the SBFT first and, depending on the results, do the gluten challenge later.

That's just my opinion and you really need to discuss it with the GI so both of you can agree on your course of treatment.

Thoughts and prayers are with you,
Posted 4/12/2011 5:16 AM (GMT -7)
It's up to you, not the doctor.  You already were diagnosed with celiac, there really is no need to do another test.  There is no need to physically make yourself ill by eating gluten just to prove celiac to the doctor.  Even if you did not have celiac and were gluten intolerant, you know gluten makes you ill.  There is nothing in this world that would make me eat gluten for any test.  I get very sick with just a tiny cross contamination of gluten, less than 5ppm will make me so sick.

It's just my opinion, but I wouldn't allow this test.  You already know gluten is a huge problem for you.

It doesn't matter where or when you eat gluten...the effect will be the same, you will get sick.  The comfort of your home will only make you feel better that you are sick in your own surroundings, and that isn't much comfort to me, not sure about you.

Maybe you could suggest he do gene testing.  Since you already had the blood work done, gene testing could confirm that you have the DQ2 or 8 genes that are considered celiac genes...you do not have to eat gluten for this test, it's just a blood test.

Also, 1 and 1/2 week of eating gluten will not flatten the villi enough for him to find it in testing.  They say at least 6 weeks of eating gluten and I will not do that to myself.

Posted 5/3/2011 6:27 AM (GMT -7)
Most doctors would not ask you to start eating gluten again.  I have been battling to get a diagnosis for 30+ years.  I have had the two old gold standard tests that came back negative.  One blood test and one biopsy.  Now there is a new gold standard or HLA DQ2 or HLA DQ8 genes.  Read Dr Peter Greens book on Celiac Disease written in 2010.  It goes in to other symptoms and diseases that go along with Celiac.  The tests are something new, but much more accurate.  It even tells if it came down one side or the other of your parents.  Lucky me, it came down both sides.  I am now a genuine celiac and would love to tell the 30+ plus doctors I went to looking for the diagnosis that they need to broaden their knowledge!  I am now on the Specific Carb. Diet.  Elaine Gottschall wrote a book called "Breaking the Vicious Cycle".  My last doctor told me to read it and follow it to a tee. Thank you Dr Dorninger!!!!!! If I had not, I shutter to think If I would still be alive.  A hard road to hoe, but I have too much to do to let food win my battle. 
Posted 5/3/2011 10:19 AM (GMT -7)
If you read Dr. Greens book, he still insist on an endoscopy for prove, not blood work.  He's still old school.
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