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      Frequently Asked Questions About Celiac Disease   09/30/2015

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DChelleD

Quest Diagnostics' Turnaround Time For Hla Typing For celiac disease Gene Test?

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I have no patience and will drive myself insane waiting for the phone to ring with my results. Blood draw was on Wednesday at noon. Anyone have experience with Quest Diagnostics' (in the US) turnaround time for the HLA Typing for celiac disease gene testing? How long does it typically take to do the test? I wish my state allowed me to get the results directly, but no, only the doctor can release it :(.

 

By the way, I had my family doctor order the test for me since my insurance will cover it 100% and I would have had to wait until November to see a GI doctor.  My family doctor was not familiar with the HLA testing and was hesitant to order it, so I brought her Quest's explanation of the test and their test code ordering info.  ;)   Big help!  She agreed and wrote up the request form.

 

Why I chose to go with the HLA Typing for celiac disease test:  I've had the celiac panel done (in 2006 and then again recently) and biopsies taken (in 2006), but I have doubts with the accuracy and the doctors knowledge of celiac at the time. Rather than continuing a gluten challenge and repeating the celiac panel or EGD, I decided to just go with the HLA testing and let that be my determining factor with how I continue. I myself will be gluten-free indefinitely regardless of the results. I KNOW I am intolerant and Allergy IgG testing shows high “allergy”/intolerance to wheat, rye and gluten (among quite a few other foods).  This challenge has really taken a toll on me.  Besides my increased GI, skin, fatigue, brainfog and hair loss symptoms, I think it also caused an RA flare and my blood glucose has seemed a bit on the higher side lately. I had gestational diabetes 14 years ago with second child and prediabetes 3 years ago with third child.  My BG returned to normal after the pregnancy but given it has been three years and I’ve had some recent symptoms of what I used to get with high BG, I just had a recheck along with a recheck of my vitamin D (deficiency was found a year ago, brought back up with high dose tablet then switched to lower dose for maintenance for the past several months).  Both tests came back in normal range.  A1c was 5.3 so not in “prediabetes” range but still think it is a little higher than it needs to be. I don’t want to risk a prolonged gluten challenge pushing me over.  So, I am pretty confident that my only choice is to go 100% gluten-free.  BUT, I have 3 kids who are all on the small side. All of them have always been on the lowest (and sometimes fell off) the standard growth chart.  My older kids are on the later end of puberty and they all have occasional tummy troubles and other minor ailments. I have other family members who have GI problems too. I just need to know if I do carry the celiac disease genes then I know to keep a closer eye on my kids and have them screened from time to time and notify my family who may want to look into it for themselves.  If no genes, then maybe I can relax a little.

 

I hate waiting…..

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I go through Quest and mine usually come back the same day/next day. However, it takes a few days for my doctor to get a hold of me and let me know the results. I think the total turn around time for my last batch of tests was 4 days.

Edit: Let me clarify that it also depends on the test and the number of tests Quests gets in a day. 

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It likely depends on the test.  Genetic tests seem to take longer.   I was told that, they only ran certain tests once or twice a week.  That can make a difference, too.  Relax.  I doubt your doc will have them until late next week at the earliest.

 

Could you call Quest and ask?

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I didn't use Quest.  I used a mail in lab and had a wait time of 3 weeks.  At first I obsessed about it, but after a few days I kind of forgot about it.  Perhaps that will be harder when you think it could come so soon.  I would call the doctor's office and ask what the processing time estimate is.  I have looked from catalogs from labs and they included such estimates in them.  I would wait until that amount of time expired and then I would allow myself to call for results once daily until you receive them.  With this plan I would think you will get the fastest possible answer.  The doctor will know you are anxiously waiting and will likely contact you as soon as they see your results.

 

Then the phone will ring.  Perhaps you will have to catch your breath and flashes of what will happen next will go through your mind.  I sure did before I opened the e-mail.

 

I hope you will receive as definitive answer as possible.

 

D

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Do you mean that your state prohibits any other person at the doctor's office (besides the doctor) to give results?  

 

What I usually do is request that a duplicate report is sent directly to me from the lab as well as to the doctor.  This way, I sometimes even get results before the doctor sees them.  Plus I don't have to bug the doctor for a copy either.  I can't imagine it'd be illegal to get the results to you in this way no matter what state you live in.  

 

There's a little section on the lab request form that says "Send Duplicate Report to:" and then a space for a name and address.  That's for Quest but I've done it with other labs too - each seems to have it's own method (some you need to request and fill out a quick form with your address)

 

In any case, it's too late to do that now I know.  I usually get results mailed to me within a week, often only a few days, but I'm not sure if the genetic test takes longer - it might.  Our doctor also says to wait for one week as well before calling for results.

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Appletree, I mean that I can not get the results directly from the lab. My state (Florida) does not allow the lab to provide me with the results at my personal request, nor can I partcipate in any app/service to get results sent to me directly. I was unaware of any option for the doctor to give authorization for me to receive a duplicate copy. I will have to check into that for next time. I usually get a call from the nurse with results and doctor instructions and then I go by and pick up a copy.

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are testing the other half of the equ.? ie Dad?  and remember that not all celiacs are DQ2 or DQ8, just most.

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We have kaiser, and they have online posting, so any lab work results are posted within two days, usually the first day,  It sure is handy.  Sometimes the results are posted before I remember to go in and look for the results.   Doesn't mean I always know what they mean, I often have to go to the Dr and have him interpret them for me. :)  

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Just wanted to come back and update. I got my results on Tuesday (nearly 2 weeks after the draw).  I should have received them a few days earlier considering the specific lab that was doing the test said they have a pretty reliable turnaround of 8-9 days, but my Dr’s office was closed for a long holiday.

 

In any event, my HLA gene test results were negative.  I don’t have the written report yet but the nurse should be mailing it to me. I am very relieved to finally have a clearer answer as far as true Celiac or not. Regardless, I know for absolute certainty that I am gluten intolerant. Considering all that I mentioned in my original post and the fact that it appears to me that my RA is starting to act up after my gluten challenge (bloodwork a week ago shows RF is up but CCP is still down so staying off meds for now other than Ibuprofen), I am self diagnosing NCGI and will commit myself to a strict gluten-free diet. As far as my kids, I can rest a little easier now and not have to constantly worry about whether or not they have or can develop celiac disease. On the other hand, I'm sure I'll find something else to worry about with them. For instance, I still can't explain why they are much smaller/skinnier than their peers, including their cousins whose parents are shorter/smaller than DH and I.  

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