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

[Barcino]

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!
 

[trents]

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 July 19, 2023 by trents

[Barcino]

  On 7/19/2023 at 7:32 PM, 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!
 

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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]

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

[Barcino]

  On 7/19/2023 at 8:50 PM, trents said:

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

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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]

  On 7/19/2023 at 9:04 PM, 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. 

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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]

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

[frieze]

  On 7/19/2023 at 9:04 PM, 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. 

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

[Barcino]

  On 7/20/2023 at 6:34 PM, frieze said:

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

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thank you - I am pretty feisty! 😁

[Barcino]

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

[trents]

  On 7/22/2023 at 7:52 PM, Barcino said:

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

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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]

  On 7/22/2023 at 8:09 PM, 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.

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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]

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 July 22, 2023 by trents

[Barcino]

  On 7/22/2023 at 8:50 PM, 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.

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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]

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]

  On 7/22/2023 at 9:52 PM, 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

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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 July 23, 2023 by trents