Gluten Re-challenge

[RebeccaAlys]

My gastroenterologist in college (in NY) diagnosed me with celiac disease due to clear symptoms, family history, and blood test results. He informed me to go on a gluten-free diet and all would be well. I did and I have kept strictly to it since then (6 years). 6 months ago my GP (now in MA) recomended that I see a gastroenterologist here in New England.

I did and he was uncomfortable with the fact that I never had an endoscope diagnosis. I told him that I felt comfortable with it because I would be on a gluten-free diet anyway since my symptoms are so severe. He seemed to be ok with that.

I went for a checkup on Friday and now he really wants me to do a gluten challenge (10g of bread 4-6 weeks) and have an endoscope done. The only issue is my main symptoms are constipation (5-6 days) and incredible intestine pain. (I had appendicitis 4 years ago and didn't go to the hospital for 2 days because I thought I had eaten some hidden wheat.)

What do I do? Do I need a new doctor? Do I take the challege? What if it hurts so bad I can't go to work? Please help.

[Ursa Major]

Hi Rebecca, and welcome to this board.

Your new GI is wrong. You have your diagnosis, you know gluten makes you ill, and there is NO POINT in making you ill again, just because this doctor doesn't agree with the previous one!

Constipation and intestinal pain are common celiac disease symptoms. Your new GI seems to be one of those ignorant doctors who think that you can't have celiac disease if you don't have diarrhea and weight loss. In fact, the minority of celiacs have those symptoms!

You have been on a gluten-free diet for 6 years. Your villi have healed. If you do a gluten challenge now, you would destroy your villi again (and it would likely be more like three months to a year before that happens and your blood work and biopsy MIGHT be positive), which could result in permanent damage and could trigger other autoimmune diseases. Not to mention that you would likely end up very ill.

Please don't do it. If he insists, switch doctors.

[lizard00]

Would he settle for running a genetic test on you? Thankfully this was the option my GI came up with and my bloodwork was negative. He just really wants to know if I have Celiac or not to monitor me down the road. I told him I really didn't need a diagnosis, and I wasn't going to eat gluten to have it. So, he suggested the DNA test and that was good enough for both of us. I understand his concerns in having a diagnosis, although the truth be told I really DON'T want a dx in my records. But... he is comfortable with whatever the DNA results are and the positive dietary response.

Did he say why it was so important for him to do an endoscopy on you with your previous GI's dx and your dietary response?

[Phyllis28]

I agree with Ursa Major. I have only an upper GI and response to a gluten free diet that was the basis for my diagnosis and I would run, not walk, away from any doctor who was insistant on doing a gluten challege.

I have had enough accidental glutenings in the last 30 years to know gluten makes me sick.

Simply say, no. Find another GI if this one will not accept your decision not to do a gluten challege.