Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

How long does it take to get results back, typically?


Barcino

Recommended Posts

Barcino Rookie

Hello, 

My son (19) was diagnosed with celiac last week. It has been a whirlwind. The rest of the family tested. My husband was tested by his endocrinologist and bloodwork sent to a local lab and came back negative in 3 days. My daughter and I got bloodwork done that got sent to quest, like my son. For my son's positive we had to wait a week and a half.  We are now on day 5 and I am starting to get nervous we are also going to have positives. I think my daughter will be positive, because she had a very low ferritin level a year ago and low vitamins. I have had low vitamins in the past but they correct with supplementation so I am not as sure that I would have it. 

Mostly, wondering how long did your negative and positive tests take. 

Thank you!
 


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



Celiac.com Sponsor (A8-M):



trents Grand Master
(edited)

Welcome to the forum, Barcino!

How long it takes depends in part on what tests and how many were ordered for each person. Speaking of tests, you say your husband was negative. For which antibody test or tests? I wonder how thoroughly he was tested. Most doctors who aren't GI docs (and even some GI docs) are pretty lacking in their knowledge about celiac disease and how to properly test for it. Many will order only the tTG-IGA test and some people who actually have celiac disease will test negative and are missed. Do you have access to the test results and would you be willing to post them? Here is an overview of blood antibody tests that can be run:

I wish more docs would order a full celiac panel in the first place. It would also be helpful to order genetic testing for you and your husband so as to know whether or not your husband has the genetic potential to develop celiac disease or if you do.

Edited by trents
Barcino Rookie
1 hour ago, Barcino said:

Hello, 

My son (19) was diagnosed with celiac last week. It has been a whirlwind. The rest of the family tested. My husband was tested by his endocrinologist and bloodwork sent to a local lab and came back negative in 3 days. My daughter and I got bloodwork done that got sent to quest, like my son. For my son's positive we had to wait a week and a half.  We are now on day 5 and I am starting to get nervous we are also going to have positives. I think my daughter will be positive, because she had a very low ferritin level a year ago and low vitamins. I have had low vitamins in the past but they correct with supplementation so I am not as sure that I would have it. 

Mostly, wondering how long did your negative and positive tests take. 

Thank you!
 

Hi there! Thanks so much :) we are part of a club we didnt want to really be but we are thankful for the support. I had my husband ask for a comprehensive celiac panel and he was tested for multiple things (just like my son was) all negative. My son was ALL positive and through the roof. I am originally from Spain, and my cousin and her daughter have celiac so I was pretty aware. In fact I was the one pushing for testing. My son has terrible acne and I pushed for a deep bloodwork workup that came back with insanely low ferritin and very low folate and I just knew. Then I had to push the pediatrician to test and begged my way into a GI seeing him right away because at first they told me end of Nov. Sadly, I was right. My daughter had similar ferritin values last year and her neurologist dismissed me but when my son's test were the same I just knew and got the ball rolling :(  Sure enough blood + and marsh 3b with gastritis and a benign nodule to boot that was also removed. 

trents Grand Master

Kudos to you! You really are on top of it it seems. Keep up the good advocacy for your family.

Barcino Rookie
11 minutes ago, trents said:

Kudos to you! You really are on top of it it seems. Keep up the good advocacy for your family.

Thank you. The first nurse practitioner is fabulous and she runs my thyroid panels and does all this extensive bloodwork - thats the first person I saw. She thought it was odd but just suggested retesting in 3 months. The pediatrician was "NOT THAT WORRIED" - I told her well, I AM. I mean you have to be a bully sometimes to get through the system but we got it done. I knew that iron and folate were absorbed in the small intestine. I am a homeschool mom and teach biology haha - I know enough between that and my cousin of this to have been on my radar and was like a dog with a bone. 
I am now just really antsy to get results for my daughter and I. Pretty sure quest sends to California for this test and they hold results for a while by state law... and I know that if something is positive then something else gets tested etc etc...  I JUST WANT TO KNOW UGH. Patience is not my greatest virtue, which I guess worked nicely to get my son diagnosed. 

trents Grand Master
14 minutes ago, Barcino said:

Thank you. The first nurse practitioner is fabulous and she runs my thyroid panels and does all this extensive bloodwork - thats the first person I saw. She thought it was odd but just suggested retesting in 3 months. The pediatrician was "NOT THAT WORRIED" - I told her well, I AM. I mean you have to be a bully sometimes to get through the system but we got it done. I knew that iron and folate were absorbed in the small intestine. I am a homeschool mom and teach biology haha - I know enough between that and my cousin of this to have been on my radar and was like a dog with a bone. 
I am now just really antsy to get results for my daughter and I. Pretty sure quest sends to California for this test and they hold results for a while by state law... and I know that if something is positive then something else gets tested etc etc...  I JUST WANT TO KNOW UGH. Patience is not my greatest virtue, which I guess worked nicely to get my son diagnosed. 

Yes, you definitely have to be assertive when it comes to getting proper testing for celiac disease. Many doctors are insecure when you come to them with your own research data and they dig their heels in or get dismissive. We hear this all the time on the forum and we urge people to get a new doc if theirs behaves that way.

RMJ Mentor

As others have said, good for you for pushing for the testing/diagnosis!

You might be able to call Quest and ask for the turnaround time. Looking at their website shows two Quest labs (basically East and West coast) that could run the test. I’ve added the link for the test with reflex, which could take longer.

Quest link


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



Celiac.com Sponsor (A8-M):



frieze Community Regular
21 hours ago, Barcino said:

Thank you. The first nurse practitioner is fabulous and she runs my thyroid panels and does all this extensive bloodwork - thats the first person I saw. She thought it was odd but just suggested retesting in 3 months. The pediatrician was "NOT THAT WORRIED" - I told her well, I AM. I mean you have to be a bully sometimes to get through the system but we got it done. I knew that iron and folate were absorbed in the small intestine. I am a homeschool mom and teach biology haha - I know enough between that and my cousin of this to have been on my radar and was like a dog with a bone. 
I am now just really antsy to get results for my daughter and I. Pretty sure quest sends to California for this test and they hold results for a while by state law... and I know that if something is positive then something else gets tested etc etc...  I JUST WANT TO KNOW UGH. Patience is not my greatest virtue, which I guess worked nicely to get my son diagnosed. 

There is being impatient, and there is NOT BEING a door mat,  you fall in second category 

Barcino Rookie
2 hours ago, frieze said:

There is being impatient, and there is NOT BEING a door mat,  you fall in second category 

thank you - I am pretty feisty! 😁

Barcino Rookie

I was negative / my husband negative.  BOTH KIDS POSITIVE! How can this be? 

trents Grand Master
13 minutes ago, Barcino said:

I was negative / my husband negative.  BOTH KIDS POSITIVE! How can this be? 

Because the development of celiac disease requires not only the genetic potential but also a triggering event, such as a viral infection or other stress event. 40% of the population have the genetic potential to develop celiac disease but only about 1% actually develop it. Without a triggering event, the genes do not produce an active form of the disease. It is latent until triggered.

Barcino Rookie
28 minutes ago, trents said:

Because the development of celiac disease requires not only the genetic potential but also a triggering event, such as a viral infection or other stress event. 40% of the population have the genetic potential to develop celiac disease but only about 1% actually develop it. Without a triggering event, the genes do not produce an active form of the disease. It is latent until triggered.

Thank you - it seems hard to believe that we would have both kids with it but no parent - but I guess we can both carry the gene, in fact we think we both do. I have a cousin and her daughter with celiac / and my husband has a nephew with the gene on his side - he actually was taken off gluten because he has issues with behavior while on gluten, he has autism. They are now wondering if he might have celiac. 

 

trents Grand Master
(edited)

And remember, you can develop celiac disease at any age. Just because you and your husband don't have it now doesn't mean you will never develop celiac disease if, in fact, you both have the genetic potential. Have you considered getting genetic testing done to sort that out? You can order home test kits for around $200 U.S. You just do a nasal cheek swab and send it off to the lab used by the test kit manufacturer.

Edited by trents
Barcino Rookie
58 minutes ago, trents said:

And remember, you can develop celiac disease at any age. Just because you and your husband don't have it now doesn't mean you will never develop celiac disease if, in fact, you both have the genetic potential. Have you considered getting genetic testing done to sort that out? You can order home test kits for around $200 U.S. You just do a nasal cheek swab and send it off to the lab used by the test kit manufacturer.

Yes, we are going to go ahead and do genetic testing. We have more than met our deductible this year with my son's diagnosis so we are going to test for EVERYTHING and I am considering doing an endoscopy for peace of mind. We will see, probably not necessary.  I am still somewhat shocked that no parent has it even if you make the logical point of it is a gene that we pass and not everybody expresses. Just feels crummy when you give your kids bad genes :(

Wheatwacked Veteran

Take a look at vitamin D levels. I venture to say those of you who are asymptomatic and testing negative have higher 25 Hydroxy vitamin D plasma levels.

There are over 200 other symptoms linked that improve with gluten free diet.  My son was diagnosed as soon as he was weened.  I stayed in denial until I was 64.  Going over my wifes illnesses from childhood, though she passed in 2005, I am convinced she also had it.

 

trents Grand Master
(edited)
6 hours ago, Barcino said:

Yes, we are going to go ahead and do genetic testing. We have more than met our deductible this year with my son's diagnosis so we are going to test for EVERYTHING and I am considering doing an endoscopy for peace of mind. We will see, probably not necessary.  I am still somewhat shocked that no parent has it even if you make the logical point of it is a gene that we pass and not everybody expresses. Just feels crummy when you give your kids bad genes :(

Keep us posted about the genetic testing results. There are three genes that have been tied to the development of celiac disease. For a long time we thought there were only two but another one has recently been discovered IIR. It could be that both you and your husband only have one or the other but you gave your kids more than one which may have increased their chances of developing celiac disease.

Sounds like you intend to get insurance to pick up the tab on the genetic testing. Do you think your physician will go for that?

Edited by trents

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,103
    • Most Online (within 30 mins)
      7,748

    shereej
    Newest Member
    shereej
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      My mother also has celiac disease, and one of her symptoms for many years before her diagnosis was TMJ. I believe it took her many years on a gluten-free diet before this issue went away.
    • Jeff Platt
      Ear pain and ringing your entire life may or may not be TMJ related but could be something else. A good TMJ exam would be helpful to rule that out as a potential cause from a dentist who treats that. I have teens as well as adults of all ages who suffer from TMJ issues so it’s not a certain age when it shows up.   
    • cristiana
      Not sure if related to coeliac disease but my ear ringing  has stepped up a notch since diagnosis.  Even since a child silence really hurts my ears - there is always a really loud noise if there is no other noise in a quiet room - but my brain has learned to filter it out.  Since diagnosis in my forties I also get a metallic ringing in my ears, sometimes just one, sometimes both.  But it comes and goes.   My sister also suffers now, we are both in our fifties, but she is not a coeliac, so for all I know it could just be an age thing.  I do get occasional stabbing pain in my ears but that has been all my life, and I do appear to be vulnerable to outer ear infections too.  So not a particularly helpful reply here, but I suppose what I am trying to say is it might be related but then again it could just be one of those things.   I think in the UK where I live doctors like you to report if you get tinnitus in just the one ear.  I reported mine but no cause was found.  Most of the time it is nothing but sometimes it can have a cause that can be treated, so perhaps worth reporting to your GP.  
    • Scott Adams
      Welcome to the forum, and thank you for sharing your story! It sounds like you’ve been through an incredible journey with your health, and it’s no wonder you’re starting to piece things together and wonder about celiac disease. Your experiences—from childhood through adulthood—paint a picture of symptoms that are often associated with celiac disease, though they can overlap with other conditions as well. The recurring sinus infections, being underweight as a child, chronic gastrointestinal issues, nutrient-related symptoms like cramps, and the persistent fatigue and brain fog are all things that many people with undiagnosed celiac report. Your reactions to gluten also stand out. The improvement in symptoms when you reduce or remove gluten, followed by the resurgence of pain and other problems when you reintroduce it, is a common experience for those with celiac or gluten intolerance. While your frustrations and trials with elimination diets might not have given you concrete answers yet, they’ve provided valuable clues. It’s also worth noting that celiac disease doesn’t always present in the classic way. Many people, like yourself, may not experience severe gastrointestinal distress but instead have “atypical” or extraintestinal symptoms like joint pain, menstrual irregularities, fatigue, and more. It’s a condition that can go undiagnosed for years, especially when symptoms are subtle, sporadic, or mistakenly attributed to other issues. The fact that you’ve sought alternative approaches to feel better shows just how determined you’ve been to find relief, even without a definitive diagnosis. Given your history and how your body responds to gluten, it would be worth exploring celiac disease further with a medical professional. Before removing gluten completely, it’s important to get tested while you’re still eating it, as going gluten-free beforehand can affect the accuracy of the results. A blood test for celiac antibodies (like tTG-IgA) is usually the first step, and if positive, an endoscopy may follow to confirm the diagnosis. If the testing process feels daunting, keep in mind that getting answers could give you clarity and help guide your health decisions going forward. Whatever the outcome, you’ve already made significant strides in identifying triggers and managing your symptoms. Your awareness and persistence are key, and this community is here to support you as you continue to seek answers. This article might be helpful. It breaks down each type of blood test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • More2Learn
      Hi, I am new!  (Although I've used this forum as a reference over the past couple of years.) I'm just looking for some initial reactions to if I actually might possibly have Celiac Disease, or if I'm reaching here.  I have had lifelong health issues and not once has a doctor suggested I look into celiac. I always thought it was basically an extreme allergy that needed an EpiPen, and I know that's not me.  However, I stumbled upon some symptoms, realized I was wrong, and after some research I'm almost shocked at what I have found.  It seems like anything I've ever struggled with has a potential correlation to this disease!  I'm in my 40's, now.  Here is my journey to date... Issues as a Kid: tons of allergies, and had sinus infections all the time... however I didn't have hayfever-like allergies and the scratch tests didn't register much, it was more that when I was exposed to allergens (like say I spent hours with a cat) I was certain to get a sinus infection and it lasted months. was extremely skinny and everyone always said I was anorexic (I wasn't) always getting sick and the illnesses hang on for a long time always cold (my favorite thing to do is sit in front of a space heater or be out in 90 degree weather) intermittent bad constipation (still happens but not as severe) horrible toe cramps that would wake me up in the middle of the night As I got older (teenage/college years): acid reflux diagnosis learned that beer made me EXTREMELY sick, cannot tolerate it horrible issues with menstrual cycle - I wasn't regular, had awful cramps and PMS, sometimes cannot function the first couple of days night terrors/sleep walking more stomach issues - I learned I couldn't have black coffee.  I often had issues especially when traveling.  For example I finally noticed a pattern that I could never, ever eat at a hotel buffet spread - it would always make me sick afterwards. More recent problems: always tired periodic pain on right side that can be so painful I can't stand up straight. Have had all kinds of scans and doctors always say I'm fine.  I was so sure I had gallstones or my liver was failing but... nope. chest pain brain fog not diagnosed but many, many ADHD symptoms lots of inflammation, am overweight now toe cramps evolved into leg/calf cramps None of my symptoms from any era of my life ever really resolved, except I went from being skinny to ~20/30 pounds overweight, and as I got older I got less outright sinus infections.  Largely due to the pain in my right side and the fact that I always, always seem to pick up every illness, especially when traveling, I started pursuing alternative medicine paths... I did the Pritikin lifestyle, I tried an elimination diet, I followed the Root Cause Protocol, I did a Leptin reset.  A lot of these paths recommend removing gluten, and in the past year or so some of my symptoms have gone away!  Specifically less issues with toe cramps, sometimes the side pain would go away for a long time, and my acid reflux got much better.  But, because I was never diagnosed with any specific intolerance, I wasn't militant about the gluten - I had cut out dairy, soy, all kinds of things.  So I would say cross-contamination is ok, or make an exception at a group outing. Then one day, I just got frustrated and ate some normal slices of pizza... and my side pain came back!  I started doing research and now I'm here and wondering... could I have actually had this my whole life??!? Thoughts and observations welcome.           
×
×
  • Create New...