Valid Celiac Testing?

[cinderfi]

I have had a major issue with wheat for the past couple years and have been lactose intolerant for almost eight years. I noticed a couple years ago I was getting sick and bloated all the time. I started a food diary and noticed it was after wheat. I cut it out for the most part for a couple months and then saw my doctor for an annual physical. She advised she would test for celiac sprue, at the time I didn't really know what it was. The test came back negative but it was then when I started my research. In addition to getting sick from wheat and being lactose intolerant, I also suffer from osteopenia/mild osteoperosis, vitamin d and calcium deficiency, thyroid issues (enlarged thyroid and nodules), and also knee and ankle problems. I am always constantly hungry and tired and run down. There are a couple cases of gluten intolerance in my family but nothing confirmed. I recently got tested again in my last physical but it came back negative. I feel pretty strongly I may have it but wondering since I stay away from gluten 95% of the time, if that would skew the test results. My doctor recently advised it doesn't matter if I am still eating gluten or not. I don't mean to sound neurotic but I am considering a second opinion. Does anyone know what the most valid/reliable test is for celiac? Any info or advice is greatly appreciated.

[The Fluffy Assassin]

I have had a major issue with wheat for the past couple years and have been lactose intolerant for almost eight years. I noticed a couple years ago I was getting sick and bloated all the time. I started a food diary and noticed it was after wheat. I cut it out for the most part for a couple months and then saw my doctor for an annual physical. She advised she would test for celiac sprue, at the time I didn't really know what it was. The test came back negative but it was then when I started my research. In addition to getting sick from wheat and being lactose intolerant, I also suffer from osteopenia/mild osteoperosis, vitamin d and calcium deficiency, thyroid issues (enlarged thyroid and nodules), and also knee and ankle problems. I am always constantly hungry and tired and run down. There are a couple cases of gluten intolerance in my family but nothing confirmed. I recently got tested again in my last physical but it came back negative. I feel pretty strongly I may have it but wondering since I stay away from gluten 95% of the time, if that would skew the test results. My doctor recently advised it doesn't matter if I am still eating gluten or not. I don't mean to sound neurotic but I am considering a second opinion. Does anyone know what the most valid/reliable test is for celiac? Any info or advice is greatly appreciated.

Second opinion hell; fire that doctor. You have to be eating gluten for testing to be accurate. Maybe not all day at the pizza buffet type gluten (oh wait-- that was just me) but at least several slices of whole wheat bread a day for at least the six weeks before the test. However, there is no law that says that you have to be tested; both blood tests and biopsies are notorious for false negatives. You can just go gluten-free and see if it helps. If you're in fact celiac, it has to be 100%; 95% is as bad as not bothering at all.

That said, if you want testing (find a doctor who knows what s/he is doing and) ask for the celiac panel. What that includes is found here in the second post: https://www.celiac.com/gluten-free/index.ph...mp;#entry480385

Best of luck, and you don't sound neurotic, you sound right.

[cinderfi]

Second opinion hell; fire that doctor. You have to be eating gluten for testing to be accurate. Maybe not all day at the pizza buffet type gluten (oh wait-- that was just me) but at least several slices of whole wheat bread a day for at least the six weeks before the test. However, there is no law that says that you have to be tested; both blood tests and biopsies are notorious for false negatives. You can just go gluten-free and see if it helps. If you're in fact celiac, it has to be 100%; 95% is as bad as not bothering at all.

That said, if you want testing (find a doctor who knows what s/he is doing and) ask for the celiac panel. What that includes is found here in the second post: https://www.celiac.com/gluten-free/index.ph...mp;#entry480385

Best of luck, and you don't sound neurotic, you sound right.

Great, thank you very much for your opinion. I have seen the bread recommendation before. I would imagine any kind of bread with wheat flour would do though? I get more sick with whole wheat rather than with bleached wheat flour. I am going to do some research and get a referral to someone who specializes with celiac. Thank you!

[The Fluffy Assassin]

Great, thank you very much for your opinion. I have seen the bread recommendation before. I would imagine any kind of bread with wheat flour would do though? I get more sick with whole wheat rather than with bleached wheat flour. I am going to do some research and get a referral to someone who specializes with celiac. Thank you!

You'd do well to search the Doctors section of this forum with the name of your hometown. There aren't tons of doctors who specialize in celiac disease anywhere in the US because the number of celiacs is thought (probably incorrectly) to be small.

I've never been tested at all, so have very little insight into the matter, but would assume that you'd have to eat considerably more white bread than wheat to assure a chance of an accurate result. Hopefully someone with more knowledge will turn up momentarily.

(Of course, the other thought is that if you're getting that sick from slices of whole wheat bread, there's your answer.)

[nora-n]

Yes, you have to eat a lot of gluten for the tests to show up positive.

Still people test negative after trying the gluten challenge for some weeks.

I have read some abstracts on pubmed that suggest that sticking with the gltuten challenge for some more time might help with getting a diagnosis.

My doctor was just stupid, he said that they PROVED I could not have celiac (after 5 weeks back on gluten) the shortest recommended time I read was 6 weeks....