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I Got Bloodwork Today To Check For Celiac

UpbeatPete

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UpbeatPete Explorer
UpbeatPete
Posted

My doctor accepted my request to be checked for celiac. I went and got my blood drawn. How long did it take for you guys to get your results back?

What happens if it comes back positive? More tests?

What should I do if it comes back negative? I know there is a high chance of a false negative.

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mushroom Proficient
mushroom
Posted

Good for you for taking the first step. You should have the results back within a week depending on the lab. Make sure you get a copy of the report.

If the test is positive your doctor may refer you to a gastroenterologist for an endoscopy with biopsy of the small intestine to check for damage to the gut - this is the "gold standard" of celiac disease diagnosis, with most of the medical profession regarding the blood tests as merely "indicative." It is up to you whether or not you have this test done. Some people feel that with their symptoms and the positive blood work that is enough for them; others want the further testing as proof. If you think you might be one of those you should probably go ahead with the endoscopy. Then, if you have the endoscopy, is that test positive or negative? It is possible to have positive blood test and negative biopsy. See what a can of worms this is! And to make matters worse, there is a 20% false negative rate on both tests. In the endoscopy it depends on the skill of the doctor, whether he takes enough samples, and from the right places, since the damage is generally not uniform throughout the small intestine but often occurs only in patches. Sometimes they can see it through the scope that is inserted; other times they have to wait for the samples to be viewed under a microscope.

Now that you have been thoroughly confused :P , I will add that regardless of whether the testing is negative or positive, once all testing is completed you should give the gluten free diet a strict three month trial anyway, because there is such a thing as non-celiac gluten intolerance, where you do not have celiac disease but you still do not tolerate gluten. So ridding yourself of gluten and seeing if it makes a difference is really the only way to find out if you are non-celiac gluten intolerant, because the tests are only for actual celiac disease. There is currently no test for non-celiac gluten intolerance, although they are working on it.

UpbeatPete Explorer
UpbeatPete
Posted
  • Author

Thanks for the reply Mushroom, you've been incredibly helpful these last couple of days.

I asked my doctor only yesterday to send in a order for lab work and he was more than willing; changing doctors was the best thing I've ever done.

Regardless of the results I will definitely go gluten free for a few months. At this point what have I got to lose?

IrishHeart Veteran
IrishHeart
Posted

Cannot add anything more to the "shrooms" answer except to say..My doctor feels there is almost a 40% false neg rate (not sure where he got that data) but in any case, it happens a lot!! He was really upset about it and said there needs to be a better test....many us of agree!

For most, the Proof is in the healing!!

Best wishes, Pete...great name by the way..being upbeat is a very good thing!! :)B)

UpbeatPete Explorer
UpbeatPete
Posted
  • Author

Thanks for the advice and words of encouragement IrishHeart.

I am really excited/anxious to hear what my results are. You know you aren't feeling good when you hope they come back positive.

I want to stop eating gluten so bad right now, but I know I should wait until after I get my results back.

IrishHeart Veteran
IrishHeart
Posted

Thanks for the advice and words of encouragement IrishHeart.

I am really excited/anxious to hear what my results are. You know you aren't feeling good when you hope they come back positive.

I want to stop eating gluten so bad right now, but I know I should wait until after I get my results back.

(chuckling) Yes, I understand!!....I was HAPPY to know I had celiac. I was so sick and in pain for so long...and for me, it was proof I wasn't insane and a total relief!!

Are you waiting because they wish to do a biopsy as well??

UpbeatPete Explorer
UpbeatPete
Posted
  • Author

Yeah, I thought he might; but I guess I could call up there and make sure.

These last three of years have been pretty miserable for me. Going from super fit and active to super fatigued and a lazy. I tell my mom about being so tired and fatigued and her common response is, "all college students are tired."

I replied, "if that were the case, all the bars would have been out of business a long time ago."

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IrishHeart Veteran
IrishHeart
Posted

Yeah, I thought he might; but I guess I could call up there and make sure.

These last three of years have been pretty miserable for me. Going from super fit and active to super fatigued and a lazy. I tell my mom about being so tired and fatigued and her common response is, "all college students are tired."

I replied, "if that were the case, all the bars would have been out of business a long time ago."

:D

hmm....maybe all the "tired" college kids are gluten intolerant...all that pizza, subs and beer....no one your age should go from active and fit to being that tired.

I nose-dived in health that way myself, although I am a lot older than you are, but it still made no sense!!

I see a lot of guys and girls your age on here, kiddo!!

Make sure you DEFINITELY ask for a copy of the test results. Always keep copies of any lab work, etc. from a doctor's office for your files. (We all learned that lesson.)

Good luck! Let us know!

UpbeatPete Explorer
UpbeatPete
Posted
  • Author

It can become pretty frustrating when all your friends are asking you to go out and you'd rather lay on the couch all nite. You know that something isn't right, but you are unable to put a finger on it and your doctors look at you like your crazy when you mention some of your symptoms.

I fear that more and more people are going to start suffering from this because it is in everything we eat. It's never good to eat so much of one thing, even "whole grains."

Thanks, I'll defintely get a copy.

I'll let you guys know as soon as I do. They said they were sending them to the Mayo clinic in MN and expect to get results in 5 days. Longest 5 days of my life :)

IrishHeart Veteran
IrishHeart
Posted

Actually many people already suffer the many effects of gluten, but they just don't know their fatigue, depression, eczema, anxiety, insomnia, "IBS" or joint and muscle pain, etc. is related to gluten intolerance. (there are over 300 symptoms/other conditions associated with it).

They are just "unwell" and symptom-treated and given drugs for insomnia or depression or anxiety and told it is "stress" or something else and sent home to continue feeling lousy.....If only more doctors would RECOGNIZE these symptoms and acknowledge gluten intolerance as the CAUSE and test for celiac, the number of DIAGNOSED people would be substantially larger and the number of unhealthy people sitting in doctor's offices would be substantially lower :)

But, gee whiz, there's no money in that... :blink:

I am very glad your doctor was willing to Listen to you and test you right away!! Many of us went undiagnosed for YEARS.

and You were very wise to take charge of your health, kiddo! Whatever your results, if you feel better off gluten, that's the way to go!!

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