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Ulcerative Colitis
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Posted 3/3/2015 6:09 AM (GMT 0)
I'm gluten free with UC and mildly anemic (they don't know why) and my doc wants to test for Celiac Disease. Says I need an endoscopy and biopsy, the blood test is only 80 percent accurate. Says I should eat "ideally" two slices of wheat bread for two weeks before the procedure so the results will be accurate.

The only treatment for Celiac Disease is going gluten free, he says.

I feel like I'm going around in circles. And I have to pay for this!

Need some commiseration, others' experiences, or whatever comes to mind.

Thank you.
Posted 3/3/2015 6:52 AM (GMT 0)
isn't the only real treatment for Celiac Disease gluten avoidance ?

oh wait, that's already been established turn

so I guess as usual, I'm totally confused !!!

which came first j2h:

UC
gluten free
anemia
???????

and i call bullsh!t on eating gluten so you can find out if you have a problem, i.e., celiacs, with gluten rolleyes

does being gluten free cause anemia ?

so, how long have you been GF ? and what significant changes have you seen since doing so ?
Posted 3/3/2015 11:58 AM (GMT 0)
In my case, whenever I ate gluten I actually got better so I know that I didn't have a problem with gluten, otherwise I would have gotten worse, not better. Even though the test is only 80% accurate, it's not going to be accurate at all if you don't follow the test instructions. Two piececes of wheat toast is not going to kill you, even if you are Celiac.
Posted 3/3/2015 12:52 PM (GMT 0)
Your doctor is correct, the best way to test for celiac is for patients to eat gluten and then look for the signs of damage in the small intestine. There is also a blood test but it also requires that you eat gluten for it to be most accurate. The only treatment is avoiding gluten, but they need to see damage from gluten to diagnose the disease.
I have a friend who has been GF for three years due to suspected celiac disease and her doctor wanted her to eat gluten for a month before her scope. Two weeks doesn't seem so bad.
It would be worth checking out, pernicious anemia is a common problem in folks with celiac disease.
Posted 3/3/2015 12:58 PM (GMT 0)
The only reason to get tested is so that the doctor, and you, can have a diagnostic test confirm celiac disease. There is a known correlation between iron deficiency anemia and celiac disease. (Correlation, meaning they are both seen together in some patients.)

However, if you are already eating a gluten-free diet and your doctor says that is the only treatment for celiac disease, there is no reason to take the test.

However, if there is some treatment in the future where your insurance requires a confirmation of celiac disease (no idea if that could even happen), or if you plan to reintroduce gluten in the future & would like to know for sure whether or not you have celiac disease, then you'd have a reason to take the test.
Posted 3/3/2015 1:38 PM (GMT 0)
the point here is not exactly to get a celiac diagnosis. the point is that if there is no sign of celiac, then there is need to look elsewhere for cause of anemia.

this is a needed step in treating anemia.
Posted 3/3/2015 2:21 PM (GMT 0)
My former boss was anemic and got regular iron infusions for a period of 5-7 years. Years later the traced it to having celiac disease. Once he cut off the gluten his iron levels have returned to normal and staid there. I have no idea if his case is typical.

He was a great resource when I trialed going gluten free, on how meticulous you must be with food labels, best products to get, brands, etc.
Posted 3/3/2015 8:00 PM (GMT 0)
Just stud, major changes since going gluten free two years ago: elimination of joint pain (the biggie), elimination of eustation tube dysfunction (fluid buildup, softer skin, more hair, feeling much better, weight loss, eat more nutritionally. Did nothing for UC. It's a great lifestyle.

Thanks for all your comments. You can tell how frustrated I am.
Posted 3/3/2015 8:11 PM (GMT 0)
I still just don't see how the anemia could be due to Celiac since you're already gluten-free. Have you point-blank asked your GI this? I'd want a really good answer for that question before I'd agree to the tests he wants to run (and to eating gluten).
Posted 3/4/2015 6:49 AM (GMT 0)
How gluten free are you? To be 100% you have to avoid foods that don't contain gluten ingredients but may be been processed in the same facility as gluten, etc. Oatmeal is a good example of something that's gluten-free but may be contaminated.

If you're really strict, I see no reason to take the test. If not, you could try being really strict and see what happens or do the test.

You could also try eating foods that are high in iron. Sometimes with UC, you flare, get anemic and need a boost to get back to normal. I was anemic after a major flare but one iron infusion did the trick. Got me back to normal and haven't had any problems since.
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