Blood Test Results Question

[Esch]

This is long winded, my apologies in advance...

I am under the opinion that I have celiac disease, and possibly have had it for over 6 years now. I first heard about celiac disease last year and most of the symptoms were the same ones I was having. Anyway, I changed my diet and things are working good (despite me cheating and eating stuff I shouldn't every once in awhile, but that's another story...)

A couple weeks ago I finally got around to getting the blood tests needed to diagnose this to be 100% positive I had celiac disease. The results came back negative. Out of the 4 tests, 3 were negative, 1 was borderline. I have no clue off hand what test came up borderline since my doctor didn't provide specific information. *mumble*

Anyway, I read that you have to eat gluten the day before the blood is drawn so the antibodies are in your system. I did this but the next day when I went to the doctor, he told me to come back another day to take the tests because I ate breakfast that morning and he wanted me to fast 10 hours previous to the blood being drawn. Of course I wasn't told this initially so I was slightly annoyed by him telling me this. *mumble*

Anyway, I wanted to get a few more other tests done besides for celiac disease since it's been a while since I've been to the doctor, so I had to come back for those as well. He also added that he thought the celiac blood tests were a waste of money and rarely proved anything and that I shouldn't do those. He suggested I jump straight into a colonoscopy to find out.. (I'm REALLY trying to avoid this.)

Anyway, I came back the next day for my other blood tests and he told the nurse to mark down the celiac tests as well. I'm not sure why he changed his mind the next day but I didn't question it. However, because when I left the first day and thought I wasn't going to be taking the celiac tests, I didn't eat gluten for the following day's tests. I assumed that any antibodies in my system would still be there when I did take the tests 2 days later.

Would this be the reason the tests came back negative? How accurate are these tests? Should I get retested for it and eat gluten the day before again? Is there any other medical conditions that have similar symptoms as celiac disease that I may be missing? Could I have gluten intolerance without having celiac disease? Any help on this is really appreciated. Thank you very much for your time!

Esch

[KaitiUSA]

You should not be on a gluten free diet when you get tested. If you have been on a gluten-free diet I would def. be against the biopsy. If there has been damage due to celiac alot of it would have healed. Sometimes biopsies miss because of not enough damage to the intestine. If one was elevated while on the gluten-free diet chances are you do have celiac. You have to be on gluten more than a day before you get tested or it will come back negative most likely. As for you not cheating now and then that hurts yourself more then you think. Even if you don't necessarily feel the effects of it (some people have symptoms after eating gluten and some do not) you are doing damage to your intestine. Ok well hope this helps let me know if I can help any more

[jmengert]

I was only diagnosed by the blood tests simply because I had to leave town for a month before they could get me an appointment for the biopsy. I figured, there was no way I was going to eat gluten for a month and keep feeling awful when my blood tests (all levels) were pretty high, proving enough to me that I had celiac disease.

So, when I went to the gastroenterologist a few days ago, I asked if I needed to have the biopsy now (it's now been about 2.5 months since my blood test results), and she said no because the diet seems to be working--in fact, she said that would be "cruel" to make me go back on gluten--I liked that response!

So if your blood tests show any of the four levels that is higher than normal, AND eating strictly gluten-free seems to help, I would go with that. The biopsy scares me because several people I've heard about will come back negative and had to get retested because there wasn't enough damage to get results from the first biopsy. And from all the info I've read (and boy, I've read a lot since my diagnosis), not all doctors firmly believe a biopsy is necessary.

Good luck! If you have any other questions, please let me know!

[tarnalberry]

You need to eat gluten for much more than just the day before the test. The recommendations I've heard are for a minimum of 8-12 weeks before the blood test. Not only does you're intestine need to start producing antibodies to the protein, but it has to have enough damage to release those antibodies into the bloodstream.

[Esch]

Thank you everyone, I appreciate your responses. My wife is the one who dug up info online about having to eat gluten 1 day before the tests, so obviously that site is grossely inaccurate if it's 8-12 weeks constantly instead of just 1 day.

Now the question I have is, is it a roll of the dice who gets celiac disease in your family or will everyone get it sometime down the line? I've never heard of anyone else in my family having this problem, but looking back, my Grandpa very well could have had this and didn't know about it. From what I know my Dad doesn't have any symptoms, so it may have skipped a generation and hit me instead.

Thank you again!

Esch

[KaitiUSA]

Not everyone in the family has it but they probably do have a gene for it. It is a genetic autoimmune disorder. My mom has a severe wheat allergy and we think my grandma, uncle and 3 cousins may have it as well but they have not been tested...we hope they will. Also, not everyone with celiac disease has symptoms so people in your family could very well have it and not even know while their intestines get chewed up.

When someone in the family is diagnosed everyone in the family shoud get tested because of it running in families.

Hope this helps