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GlutenFreeManna

Tricked Into The Blood Test And I Need Resources!

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For those that don't know me I have been gluten free for over a year now. I never had any testing because even a tiny bit of gluten makes me very sick. I'm well aware from reading here that if I do a blood test without consuming gluten for weeks in advance it will come back false negative. I have been having some new non-gluten related symptoms that I suspect to be thyroid issues. I try to get my thyroid checked every year because my mom and grandmother have hypothyroidism. I moved to a new city two years ago and never found a new doctor until recently. I have a bad memory when it comes to dates of all the testing I had done and I like to have my husband with me to back me up on why I am eating gluten free without a formal diagnosis. he has always been supportive of me eating gluten free and has seen the miraculous change in health I have undergone. Anyway we get in the new doctor's office, she listens to all my past medical history, my reasons for eating gluten free, my other food allergies and my reasons for requesting a thyroid panel be done. She agrees to do the thyroid panel but ALSO says she thinks I should be tested for celiac. (as an aside, this is the first doctor in my life that ever wanted to test me--why I couldn't have found to her before getting desperate and going gluten free first I don't know, but I digress). I tried to explain to her twice that it was useless to test me because I refuse to go back on gluten. She kept on insisting that I could have the blood tests and they would be accurate even if I didn't have any gluten. My husband backed me up while I was in the room and explained to the doctor how strict I really am about the diet--she was implying that she thought I was still probably eating a little bit here and there--like I was someone that probably just cut out bread and pasta and called it good--and therefore she thought I would have enough gluten in my system to be tested. It was so frustrating but I carefully explained to her that this was not just a fad I was doing most of the time, but that I don't allow any gluten in my home, I cook from scratch, eat out very rarely, eat very few packaged gluten-free products, etc. Finally she said if I didn't want to be tested that was fine since the treatment was the same either way, but she was concerned that my symptoms from consuming accidental gluten could be something else besides celiac and she wanted to rule out celiac. Double head smack from me here, because you really can't rule it out by doing the blood tests. So I asked what else she would test me for assuming this was not celiac. I agreed to be tested for other things and went to the lab for a blood draw for those things and my thyroid panel. Here is the part that has me downright ANGRY! As I left the room, my husband mouthed to the doctor "test her". In other words he told her to test me for celiac without my permission. He admitted this to me later when we left. I was ranting and raving about how ignorant of celiac testing this doctor was and I told him how glad I was that I convinced her to not waste the testing, since our insurance may not cover it and it could be expensive. So my hubby was forced to confess to me that he asked her to add on a celiac test. Apparently despite my telling him MULTPILE times that the test will be false negative he still believed the doctor knew more than me and hoped there was some new test I didn't know about. So....Now the damage is done-- I was tested without my permission! I need some simple, authoritative resources to show to my doctor and my husband to back up my claims that tests will be inaccurate if I have not consumed gluten for an entire year. Please help!

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The first two references indicate that your blood test will be negative if you have not been eating gluten. The third indicates that you test compliance with the diet by testing for the antibodies. If you are gluten free compliant the readings should be negative.

http://celiacdisease...acdiagnosis.htm

Before undergoing any celiac disease test (blood test or biopsy), it is important to continue to eat a regular gluten-containing diet. If you stop eating gluten and then get tested for celiac disease, the results may be falsely negative –- that is, the test results might say you do not have celiac disease, even if you really do.

Wm. K. Warren Medical Research Center for Celiac Disease

Patients already eating a gluten-free diet may have negative blood tests (serology) ... These tests have not been validated for diagnosing celiac disease. ...

http://celiaccenter.ucsd.edu/aboutcdadults.shtml

http://www.celiacdis...lowUpTests7.pdf

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Oh, they'll be accurate, all right. Just negative.

Oh, goody, now Ms. Doctor will have successfully tagged you with a "negative for celiac" label for the rest of your life, and she can then take your insurance on a guided spending spree of testing for every other possible thing.

or....

she wanted to see if you were cheating on the gluten free diet.

" she implied I was eating a little here and there.... "
:angry: I hope she doesn't tell you to go enjoy a clambake next with glutentypical green bean casserole on the side and a tofutti ice bar. :blink:

If she actually wanted to test you for celiac or gluten intolerance, other ways, she could have done the genetic testing for the HLA DQ 2 and 8 stuff- to see if you are in the roughly 30% of the population who are carriers of the genes - making your diagnosis more likely - are you sure that this is not what happened, by any faint chance ?

Or she could have ordered a biopsy, but you are supposed to have the positive results from a blood test first, or be having other severe symptoms of some other disease that they would be doing a biopsy for diagnosis. And likely the biopsy would come back negative, too.

Hopefully you got the thyroid antibodies test instead of just the levels because the levels might be not low while the thyroid is working like crazy.

The only way to partially salvage this is that you can look at the (likely) upcoming negative numbers and say, look, proves that I am sticking to the diet.

Re: Husband. Leave him at home if he can't behave himself.

Here is a very good link from the Mayo Clinic about celiac disease, especially as it pertains to the undiagnosed. Mentions testing while eating gluten.

Mayo Clinic. Discovery's Edge.mayo.edu/celiac-disease July 2010

http://discoverysedge.mayo.edu/celiac-disease/

He also urges people who suspect they have the disease to be tested before eliminating gluten from their diet, as that can cause a false-negative test result. At Mayo, patients considered at risk for gluten intolerance are routinely screened. At-risk patients include celiac patients

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If you have been on the gluten-free diet for a year, any medical tests will come back negative. They measure the reaction to gluten. No gluten--no reaction. Your doctor, and your husband, don't seem to grasp this. Perhaps you should find a new doctor...

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I agree - you should find a new doc. You two are obviously not on the same page and she's made it clear that she doesn't trust you. And, I think your DH could use some education as well.

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The first two references indicate that your blood test will be negative if you have not been eating gluten. The third indicates that you test compliance with the diet by testing for the antibodies. If you are gluten free compliant the readings should be negative.

http://celiacdisease...acdiagnosis.htm

Before undergoing any celiac disease test (blood test or biopsy), it is important to continue to eat a regular gluten-containing diet. If you stop eating gluten and then get tested for celiac disease, the results may be falsely negative

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I cannot understand how any doctor who takes five seconds to *THINK* about what the test is testing for fails to understand that a test on a gluten free diet will come back negative regardless of celiac status. /facepalm!

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Oh, they'll be accurate, all right. Just negative.

Oh, goody, now Ms. Doctor will have successfully tagged you with a "negative for celiac" label for the rest of your life, and she can then take your insurance on a guided spending spree of testing for every other possible thing.

or....

she wanted to see if you were cheating on the gluten free diet.

:angry: I hope she doesn't tell you to go enjoy a clambake next with glutentypical green bean casserole on the side and a tofutti ice bar. :blink:

If she actually wanted to test you for celiac or gluten intolerance, other ways, she could have done the genetic testing for the HLA DQ 2 and 8 stuff- to see if you are in the roughly 30% of the population who are carriers of the genes - making your diagnosis more likely - are you sure that this is not what happened, by any faint chance ?

Or she could have ordered a biopsy, but you are supposed to have the positive results from a blood test first, or be having other severe symptoms of some other disease that they would be doing a biopsy for diagnosis. And likely the biopsy would come back negative, too.

Hopefully you got the thyroid antibodies test instead of just the levels because the levels might be not low while the thyroid is working like crazy.

The only way to partially salvage this is that you can look at the (likely) upcoming negative numbers and say, look, proves that I am sticking to the diet.

Re: Husband. Leave him at home if he can't behave himself.

Here is a very good link from the Mayo Clinic about celiac disease, especially as it pertains to the undiagnosed. Mentions testing while eating gluten.

Thanks for the links. I'm pretty sure she was talking about the celiac panel tests, not the gene tests. She didn't bring up the gene testign at all, but she did question me carefully about my family's medical history. I may end up finding a different docotr once my blood tests for the thyroid come back. She did do a more indepth thyroid testing than the typical screening because of my symptoms and strong family history. I will be requesting copies of the results when they come in so I can see what tests were run. She WAS very thourough and took lots of time to listen to me--something not many doctors do. I just felt like she was ignorant about celiac testing. She claims she has tested and diagnosed lots of celiacs and she beleived it was common rather than rare. When it comes back negative I have no intention of undergoing anymore expensive tests. I'm really just hoping my thyroid tests turn up something. And my husband will NOT be going to my next appointment. Beleive me he got and earful from me and he won't do that again.

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I cannot understand how any doctor who takes five seconds to *THINK* about what the test is testing for fails to understand that a test on a gluten free diet will come back negative regardless of celiac status. /facepalm!

I don't know either, perhaps she thinks its like testing for a vitamin deficiency or something. I tried to explain how the tests look for antibodies and since I had not been eating gluten I would not have any antibodies in my blood. She just gave me a bewildered stare. :o

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What the what?

I really don't have much faith in doctors when it comes to Gluten Intolerance/Celiac disease...whatever you want to call it. I took my daughter off gluten/dairy and corn 6 weeks before her scheduled appointment with her pediatrician because neither of us could take one more day of her being so sick. So when he wanted to do the celiac test I told him it would be negative because she hadn't been eating gluten, and I wasn't willing to do the gluten challenge with her. He insisted that the fact she had been gluten free for weeks would not effect the tests. Well, everyone here knows that her blood test was going to be negative.

My mother, who is allergic to wheat and very intolerant has a wonderful GI (in Denver). They say the best way to test for food allergies and intolerance is through an elimination diet and dietary response. They admit the tests are pretty inaccurate. Imagine that...trusting the patient to tell the doctor how he/she is feeling? It's CRAZY. At one point the nurse was trying to convince my mother to do a gluten challenge so she could do the biopsy. Well, of course after one day she was sick as a dog. So she argued with the nurse about doing the challenge. Finally the doc got on the phone and said "Why would you keep eating something that's making you so sick?"

I've decided that if I do track down a GI I want someone who has PERSONALLY dealt the celiac, or better yet the ever elusive Gluten Intolerance that no test can seem to detect. It's frustrating. Hopefully your husband will step off. I think my husband would be shaking in his boots if he pulled that nonsense. Holy cow.

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Technically, the doc ordering a blood test you don't want is battery. I really doubt the D.A. Would prosecute it. The only time it is OK for a doctor to order a blood test or other test without the patient's knowledge or permission but because the next of kin ( hub) asks for it, is if the person appears to have something like Alzheimer's. Even then, it's a thin line between standard good medical practice, morality and the law.

Good luck.

Did you see the animation that was put up a week ago on here about thyroid tests?

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It's really scary how ignorant doctors are to all this. I too had a doctor insist on doing the bloodwork after I'd gone gluten free. Of course the results were negative. I kept telling him that I quit eating gluten and almost all my symptoms went away and that I didn't need further testing but he kept insisting it was fructose not gluten and that I felt better because I was eating less fructose. I kept pointing out all the fructose containing items I ate without issue to no avail. He insisted on doing a test. So I went to two different labs and neither had the solution I needed to drink for the fructose test. So I called his office to tell him no one in town could do the test and he said to come in and he'd take the blood and urine samples. So I asked if he had the solution I needed and he said "what solution"!!! I immediately canceled all further appointments and found a new doctor. If he can't understand that there are no gluten antibioties if you don't eat gluten and that you can't test for fructose malabsorption without ingesting fructose then he isn't someone I trust my health to!

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Does it bother anyone that she was tested for something that she clearly told the doctor she did not want to be tested for? That the doctor followed her husband's request, in her absence, against her will? :angry:

Sounds like a clear violation of professional ethics to me and that alone, aside from the doctor's evident lack of understanding of celiac disease, would be reason enough for me to find another doctor.

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Technically, the doc ordering a blood test you don't want is battery. I really doubt the D.A. Would prosecute it. The only time it is OK for a doctor to order a blood test or other test without the patient's knowledge or permission but because the next of kin ( hub) asks for it, is if the person appears to have something like Alzheimer's. Even then, it's a thin line between standard good medical practice, morality and the law.

Good luck.

Did you see the animation that was put up a week ago on here about thyroid tests?

No, what animation? Could you post a link for me please?

As far as the testing without my permission, it may technically be some form of malpractice but what can you do about it besides find another doctor and tell all your friends to stay away? I have had other docotrs do tests without my permission in the past as well. I went to the doctor as a teenager in college one time complaining that I was having nauseua and couldn't stop vomiting. They asked if I could be pregnant and I told them no that was impossible. They said, well let's do a pregnancy test anyway. I then told them "I'm a virgin. I don't even have a boyfriend. It's impossible for me to be pregnant." They said, okay we'll test you for food poisioning. They gave me a cup to pee in and two weeks later I received a bill for $40 for the pregnancy test my insurance didn't cover. I called and complained and told them I wasn't paying the bill. It didn't matter. They eventually turned it over to collections and finally I just paid it to get the people calling me off my back. But what could I have done differently? I don't know. I was not in a position to sue and I don't beleive in bringing petty lawsuits anyway. I have hated doctors and avoided going unless really sick ever since then.

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It's really scary how ignorant doctors are to all this. I too had a doctor insist on doing the bloodwork after I'd gone gluten free. Of course the results were negative. I kept telling him that I quit eating gluten and almost all my symptoms went away and that I didn't need further testing but he kept insisting it was fructose not gluten and that I felt better because I was eating less fructose. I kept pointing out all the fructose containing items I ate without issue to no avail. He insisted on doing a test. So I went to two different labs and neither had the solution I needed to drink for the fructose test. So I called his office to tell him no one in town could do the test and he said to come in and he'd take the blood and urine samples. So I asked if he had the solution I needed and he said "what solution"!!! I immediately canceled all further appointments and found a new doctor. If he can't understand that there are no gluten antibioties if you don't eat gluten and that you can't test for fructose malabsorption without ingesting fructose then he isn't someone I trust my health to!

Oh my that's terrible! It's like he was just ordering tests to say he did them. The doctor I saw was asking me all these question like "do you have bloting, gas, diarhea, etc." Everytime my answer was "Only if I have accidental gluten." As long as I'm gluten free I don't have any celiac symptoms. Imagine that! :D

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If that was my husband he would be sleeping on the couch for a month. Do look for another doctor and when you get the results of the thyroid tests do give her a piece of your mind. I would also report the doctor to head of the medical organzation she works for.

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As far as the testing without my permission, it may technically be some form of malpractice but what can you do about it besides find another doctor and tell all your friends to stay away?

Send a formal letter of complaint to the office, the insurance company and try to find a medical ethics board or something that you can also report this to. Inform the office AND the insurance company that you will NOT be paying for a test you refused, and you will pursue legal recourse if the physician/office doesn't waive all costs for the test and remove it from your record.

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No, what animation? Could you post a link for me please?

As far as the testing without my permission, it may technically be some form of malpractice but what can you do about it besides find another doctor and tell all your friends to stay away? I have had other docotrs do tests without my permission in the past as well. I went to the doctor as a teenager in college one time complaining that I was having nauseua and couldn't stop vomiting. They asked if I could be pregnant and I told them no that was impossible. They said, well let's do a pregnancy test anyway. I then told them "I'm a virgin. I don't even have a boyfriend. It's impossible for me to be pregnant." They said, okay we'll test you for food poisioning. They gave me a cup to pee in and two weeks later I received a bill for $40 for the pregnancy test my insurance didn't cover. I called and complained and told them I wasn't paying the bill.

Actually ER tests are a bit different. When you sign permission to be treated, you usually are agreeing to all the standard procedures of the ER. Pregnancy tests are standard in the ER for many reasons and illness & injuries.

I would get my results in hand and then tell the doctor, in writing if that's easier, that you did not agree to the celiac disease tests and I would send it to the insurance company, too.

I know that getting tested every year or 2 is done by some docs to just make sure you are complying with the diet and to help the patient tighten things up if some gluten is sneaking by. That doesn't sound like her reasoning.

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And find out what the laws are in your state. I suppose it's possible that your hubby has permission to agree to testing you against your will....

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And find out what the laws are in your state. I suppose it's possible that your hubby has permission to agree to testing you against your will....

Actually, only if she is mentally incompetant. Maybe suspected incompetant. May still be some states, if she is under 18, a older husband could. I think that has been done away with.

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Actually ER tests are a bit different. When you sign permission to be treated, you usually are agreeing to all the standard procedures of the ER. Pregnancy tests are standard in the ER for many reasons and illness & injuries.

I would get my results in hand and then tell the doctor, in writing if that's easier, that you did not agree to the celiac disease tests and I would send it to the insurance company, too.

I know that getting tested every year or 2 is done by some docs to just make sure you are complying with the diet and to help the patient tighten things up if some gluten is sneaking by. That doesn't sound like her reasoning.

I wasn't in an Er for the pregnancy test. I was in a regular doctor's office. We haven't received a bill yet for the celiac test so we will just have to decide what to do if/when we get one. If my insurance covers it I may not do anything except find another doctor. This doctor clearly did not do the test to check for my compliance to a gluten-free diet. She is under the impression that if it's neg then I have something else that responds to a gluten free diet.

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I think that has been done away with.

I would hope so, but not all states are as progressive as Kansas.

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Send a formal letter of complaint to the office, the insurance company and try to find a medical ethics board or something that you can also report this to. Inform the office AND the insurance company that you will NOT be paying for a test you refused, and you will pursue legal recourse if the physician/office doesn't waive all costs for the test and remove it from your record.

Well, I wish I had known about things like this when I was 18 or 19. We will wait to see how much the bill is for the celiac test. I DID sign something at the doctor's office giving my husband permission to recieve medical information about me if I'm in an accident or something like that. But I don't think it gave him permision to make medical decisions for me.

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I would hope so, but not all states are as progressive as Kansas.

I think in the US this is Federal. If a husband could force his wife to get medical procedures done....Scary!

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Well, I wish I had known about things like this when I was 18 or 19. We will wait to see how much the bill is for the celiac test. I DID sign something at the doctor's office giving my husband permission to recieve medical information about me if I'm in an accident or something like that. But I don't think it gave him permision to make medical decisions for me.

No it doesn't give him permission to agree to treatment. That is part of HIPPA. It just says that if they call your house to give the results, they can tell him. Or if he calls with a question, they could talk to him about it. When we starting writing this law 20 years ago, we intended it to be more protective of your medical info. For some reason, this is the main thing that's come out of it. Federal Gov't! :angry:

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