Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Did The Lab Run The Right Test?


Coleslawcat

Recommended Posts

Coleslawcat Contributor

I was diagnosed with celiac a few weeks ago. My GI doctor recommended I talk to our pediatrician about testing the kids. My son has always had whitish stools and my daughter complains about stomach aches frequently. They are both big for their age so they don't show the classic failure to thrive signs, but I am concerned given my lack of obvious symptoms. Anyway I had them tested and the office told me they came back negative. I have no idea what blood test was done. All I know is that the lab only billed the insurance for $4.35 for each kid. My blood tests for celiac ran closer to $800 (there was also a pregnancy test in that batch of lab tests). Now that I see the explanation of benefits I'm worried they weren't tested properly. Can a celiac test really only cost $4.35?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Squidge Newbie

Two things. If asked, the lab must provide you with what tests were done and exactly what the results were. Second, oftentimes the blood tests come back negative even if somebody does have Celiac's. Get the actual test results and what tests were done and ask your gastroenterologist. He will know if the right tests were done. He should also know if it could be a false negative and what to do.

Coleslawcat Contributor

Two things. If asked, the lab must provide you with what tests were done and exactly what the results were. Second, oftentimes the blood tests come back negative even if somebody does have Celiac's. Get the actual test results and what tests were done and ask your gastroenterologist. He will know if the right tests were done. He should also know if it could be a false negative and what to do.

Thanks for the info. I just tried calling the lab. The most they could tell me was that it was a "celiac panel". I asked which test that meant and he said "the normal one". He would not give me a more specific answer, but did say it was just 1 test. Then when I asked for results he said he could only release them to a doctor in the state of Arizona. Talk about useless! My daughter has her 3 year well check tomorrow so I will ask the doctor for more info then.

AvatarOfChaos Newbie

Thanks for the info. I just tried calling the lab. The most they could tell me was that it was a "celiac panel". I asked which test that meant and he said "the normal one". He would not give me a more specific answer, but did say it was just 1 test. Then when I asked for results he said he could only release them to a doctor in the state of Arizona. Talk about useless! My daughter has her 3 year well check tomorrow so I will ask the doctor for more info then.

This doesn't strike me as correct given your patient's rights. Check out the HIPAA Consumers Page (Open Original Shared Link). If your doctor ordered the tests, you may be able to get the detailed results from them as well. These test details are a part of your children's health records and you are entitled to a copy of them as their guardian.

- Maura

mushroom Proficient

I think when it comes to labs, x-rays, all tests ordered by a doctor, the results are released to the ordering doctor who then has the duty to release to the patient. I may be wrong, but that is what I have run into.

momxyz Contributor

Thanks for the info. I just tried calling the lab. The most they could tell me was that it was a "celiac panel". I asked which test that meant and he said "the normal one". He would not give me a more specific answer, but did say it was just 1 test. Then when I asked for results he said he could only release them to a doctor in the state of Arizona. Talk about useless! My daughter has her 3 year well check tomorrow so I will ask the doctor for more info then.

Please don't berate the laboratory unnecessarily. Let me explain, as I work in one!

First of all, in terms of the question of "did the lab do the right test" - Laboratories do not determine what tests will be done. That is the responsibility of the physician. The laboratory is obligated to perform those tests that the physician orders. Now, if we suspect that the most appropriate test has not been ordered, we may try to advise the physician, and give him the opportunity to change his orders, but ultimately, we perform only those tests that the caregiver orders.

Now in terms of the info you did (or did not) receive when you called the lab. When you called, you may have spoken not to the testing personnel, who are most knowledgeable about the exact type of test performed, but to a client support representative, whose technical knowledge is more limited. Still, that person should have been able to give you a little more info on the specific type of test performed. (At least in my lab they do; they have a complete test catalogue available to them that would provide more specifics for these types of questions.)

However, in terms of giving you the test results - labs are highly regulated entities, subject to all kinds of government laws and regulations. The fact that the lab could only release the results of the test to the physician is not an unusual restriction. I have had to reply this way to patient requests myself.

Your best bet is to ask your physician, and your kids doctor, for a copy of the complete lab report on both you and your kids. That way you will have the specific name of the test as well as the result for future reference. I hope you have the opportunity to discuss all the results with your physician!

Squidge Newbie

The fact is, according to HIPPAA, somebody has to give you the results. Also, they may not be able to share them over the phone. They have to be able to cover there buts, and might not share them if you can't verify your identity.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



momxyz Contributor

The fact is, according to HIPPAA, somebody has to give you the results. Also, they may not be able to share them over the phone. They have to be able to cover there buts, and might not share them if you can't verify your identity.

its not so much "cover our butts" as "comply with regulations". HIPPAA is very specific. If I had a patient request their results over the phone, you're right, I could not do that. I would first refer them to their physician. If they wanted to pursue obtaining the results directly from the laboratory, that would be possible (I am speaking from the perspective of my state specifically). But they would have to come to the lab in person, and we would require them to sign specific documentation. We would just be doing our jobs in following the letter of the law.

elle's mom Contributor
All I know is that the lab only billed the insurance for $4.35 for each kid. My blood tests for celiac ran closer to $800 (there was also a pregnancy test in that batch of lab tests). Now that I see the explanation of benefits I'm worried they weren't tested properly. Can a celiac test really only cost $4.35?

I have seen a similar charge on our EOB's which is simply for the process of the lab (or whoever) taking the blood, it would not include any of the cost for the actual test that was run. I think, someone can correct me if I'm wrong.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,953
    • Most Online (within 30 mins)
      7,748

    ramonaja
    Newest Member
    ramonaja
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
      Yes, his A1C was 4.9.  Fasting blood sugar and insulin was tested in the hospital in August and he was told it was excellent.  He has never had a problem with blood sugar.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.