Should I Or Shouldn't I?

kthies2 · December 18, 2009

So I just read a book on celiac disease and all of they symptoms sound like my life story. I immediately went to my general doc to see if I can be tested. She ordered the Celiac Panel blood test so I just need to go to the lab and have that done. Here is my concern. Long ago, I removed the obvious wheat containing foods from my diet MOST of the time. I just don't eat them usually because they cause pain. However, I do eat them occasionally in small amounts. I have never removed gluten 100% from my diet but I eat very little of it for the most part. I read on the internet that this test can give inconclusive results if you have removed gluten from your diet prior to taking it. Is this true and what should I do? I hate to go gordge on wheat for 3 months just so I can take this test and actually get a confirmed diagnosis! HELP! I just want to know once and for all what my issue is so I can begin to heal my poor body.

TrillumHunter · December 19, 2009

Yes, you need to be eating gluten to have an accurate test. If you've been reading then you understand that the test measures the level of antibodies produced in response to consuming gluten.

I would consider your results skewed at best if you haven't been consuming gluten. If an official diagnosis is important to you, you've possibly wasted your time with the previous panel.

Sorry to say, but that's where testing stands right now.

kthies2 · December 19, 2009

Yes, you need to be eating gluten to have an accurate test. If you've been reading then you understand that the test measures the level of antibodies produced in response to consuming gluten.

I would consider your results skewed at best if you haven't been consuming gluten. If an official diagnosis is important to you, you've possibly wasted your time with the previous panel.

Sorry to say, but that's where testing stands right now.

kthies2 · December 19, 2009

Thank you for the response and info!

How long do I need to add gluten back into my diet if I want the test to be conclusive? Are we talking a week or two or are we talking months of it?

Jean'sBrainonGluten · December 20, 2009

People list different times but between 6 and 8 weeks on daily gluten. You should check the web to get a sense of how much you need to eat each day. I think, for example, that one slice a day isn't enough to trigger the response.

The thing about not getting tested is that, for me at least, as long as I didn't have a positive diagnosis I felt like I was just a little sensitive and could get away with small amounts of gluten occasionally. I just didn't have the emotional wherewithal to continue to do the extra work it took to eat gluten free at home and at restaurants and other peoples' homes - especially a few relatives who thought it was ridiculous for me to need to eat differently. Sadly, they didn't pay the price for my continuing gluten eating, I did.

If you can manage it eating the stuff and getting the test could be worth it.

Good luck!

kthies2 · December 20, 2009

People list different times but between 6 and 8 weeks on daily gluten. You should check the web to get a sense of how much you need to eat each day. I think, for example, that one slice a day isn't enough to trigger the response.

The thing about not getting tested is that, for me at least, as long as I didn't have a positive diagnosis I felt like I was just a little sensitive and could get away with small amounts of gluten occasionally. I just didn't have the emotional wherewithal to continue to do the extra work it took to eat gluten free at home and at restaurants and other peoples' homes - especially a few relatives who thought it was ridiculous for me to need to eat differently. Sadly, they didn't pay the price for my continuing gluten eating, I did.

If you can manage it eating the stuff and getting the test could be worth it.

Good luck!

Fiddle-Faddle · December 21, 2009

At this point, your results will likely be negative until you've been on the equivalent of 3-4 slices of bread per day for at least a couple of months.

If you KNOW this causes you pain, that might be your answer right there.

You do not need a diagnosis to try a 100% gluten-free diet, nor do you need a doctor's permission, or even approval.

You DO need to keep track of your symptoms, and how diet affects them. You may need to eliminate other things from your diet, like dairy products, at least temporarily, as they can prevent the healing of gluten-damaged intestines).

If your intestinal symptoms do not resolve by diet alone,, then I think that you ought to be prepared to look further for answers. At that point, you might need to consider an endoscopy/biopsy, which is an invasive procedure, not to rule celiac in or out, as it is not the most accurate diagnostic tool, but to see what else might be going on.

Finally, be aware that some people choose to avoid an official diagnosis of celiac, as insurance companies have denied people coverage based on celiac status ("pre-existing condition"). Given the value system of the insurance companies ($$ being more important to them than health or even life), that might be something to consider.