I had a dq2/dq8 test

[wildwitchnz]

I recently had the dq2/dq8 test done and the rests have come back but I am super confused and I was wondering if anyone could tell me what it means? I have attached a screenshot of the results. Many thanks in advance

[trents]

  On 6/4/2021 at 2:47 AM, wildwitchnz said:

I recently had the dq2/dq8 test done and the rests have come back but I am super confused and I was wondering if anyone could tell me what it means? I have attached a screenshot of the results. Many thanks in advance

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Did you leave out something in your post? There has got to be something more to the report than what you posted unless we are to take that as saying you do have the celiac genes. DQ2/DQ8 are the primary genetic markers for celiac disease. However, just having the genes doesn't mean you have or even will have celiac disease. It takes some kind of stress event for the genes to be expressed in active celiac disease. Many or most times this does not happen. Having the genes just speaks to the potential for the disease.

[Scott Adams]

If you are positive for both, as I am, you likely got one from each parent, and some experts think going gluten-free would be a wise choice (Roger Deutsch, the owner of the company that does ALCAT food sensitivity testing believes that everyone with both DQ2 and DQ8 markers should be gluten-free.)

At the very least you should get a blood panel done for celiac disease. Are you having symptoms of celiac disease or gluten sensitivity?

[wildwitchnz]

This is all that came back as a result and I don't know what the 4 markers mean, that's what I am confused about, there's no numbers or anything, just those four '||||' lines? 

This was a blood test done as part of a general medical exam I had done, I had a lot of other blood tests done too, is there another one that I should be looking at as well? I can screenshot the ones that came back as being 'wrong' (they come back in red if they are outside the normal numbers)

I have all the symptoms but my Dr has always just brushed it off as IBS

[wildwitchnz]

  On 6/4/2021 at 3:13 AM, trents said:

Did you leave out something in your post? There has got to be something more to the report than what you posted unless we are to take that as saying you do have the celiac genes. DQ2/DQ8 are the primary genetic markers for celiac disease. However, just having the genes doesn't mean you have or even will have celiac disease. It takes some kind of stress event for the genes to be expressed in active celiac disease. Many or most times this does not happen. Having the genes just speaks to the potential for the disease.

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Are those four '||||' lines genetic markers? There was nothing else in the report other than that screenshot I posted

  On 6/4/2021 at 6:00 PM, Scott Adams said:

If you are positive for both, as I am, you likely got one from each parent, and some experts think going gluten-free would be a wise choice (Roger Deutsch, the owner of the company that does ALCAT food sensitivity testing believes that everyone with both DQ2 and DQ8 markers should be gluten-free.)

At the very least you should get a blood panel done for celiac disease. Are you having symptoms of celiac disease or gluten sensitivity?

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So those four lines are genetic markers? This is the result from the blood test I had done, is there more blood tests I should have done now? Sorry I'm just really confused!

[trents]

I don't blame you for being confused. A very deficient report from an information standpoint. What lab did this testing? Was this a home test kit that you sent off or was it something ordered by a physician?

[wildwitchnz]

  On 6/5/2021 at 2:00 AM, trents said:

I don't blame you for being confused. A very deficient report from an information standpoint. What lab did this testing? Was this a home test kit that you sent off or was it something ordered by a physician?

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This was a test orderded by my Dr, the blood test form says "Coeliac antibodies (TTG's). It was sent to Medlab Central at the hospital

[wildwitchnz]

  On 6/4/2021 at 3:13 AM, trents said:

Did you leave out something in your post? There has got to be something more to the report than what you posted unless we are to take that as saying you do have the celiac genes. DQ2/DQ8 are the primary genetic markers for celiac disease. However, just having the genes doesn't mean you have or even will have celiac disease. It takes some kind of stress event for the genes to be expressed in active celiac disease. Many or most times this does not happen. Having the genes just speaks to the potential for the disease.

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So I've had digestive issues for years, constant 'flare ups', always stress or anxiety related, and always been told by Drs that it's IBS. Recently, it got really bad, and I'm wondering, as you said it takes some kind of stress event, I injured my arm at work and had to go on ACC, which was hugely stressful financially, my boss was, and is, a not nice person and made my life miserable because I was not working and she was short staffed, then I started getting sick, not being able to keep food in (loose stools constantly), lost a large amount of weight very quickly, along with all the other symptoms, bloating, nausea, headaches, stomach pain etc and when I started back at work, I found I couldn't physically or mentally cope with my workload so my Dr then told me I had to stop working. Again, huge stress financially. Things have not improved health wise at all. This all started at the end of Feb this year and I had to stop work at the end of March. I had the blood tests done on the 25th of May as part of a general medical exam.

These are the blood results that came back 'iffy' I'll attach screenshots 

 

[trents]

  On 6/5/2021 at 9:39 PM, wildwitchnz said:

This was a test orderded by my Dr, the blood test form says "Coeliac antibodies (TTG's). It was sent to Medlab Central at the hospital

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Are you saying the genetic test was ordered by your Dr. along with a celiac antibody test? That is not normally done.

[wildwitchnz]

  On 6/5/2021 at 11:07 PM, trents said:

Are you saying the genetic test was ordered by your Dr. along with a celiac antibody test? That is not normally done.

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I don't know? I'm very confused. Is the dq2/dq8 the genetic test? The one where I got the four '||||' lines? If so, then I guess maybe my Dr has done both? The antibody test is what's written on the blood test form, so I'm unsure what's what I'm sorry 🤷🤦 are you saying that the four '||||' are positive genetic markers? 

[trents]

Yes, the dq2/dq8 is from a genetic test. I think you need to schedule a follow-up appointment with your doctor and get some clarification of what was actually ordered and what it mean.

[wildwitchnz]

  On 6/6/2021 at 12:14 AM, trents said:

Yes, the dq2/dq8 is from a genetic test. I think you need to schedule a follow-up appointment with your doctor and get some clarification of what was actually ordered and what it mean.

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Yes I think I will do that as I don't know what any of it means. Thanks so much for giving me your help, I appreciate it .

[frieze]

  On 6/5/2021 at 9:39 PM, wildwitchnz said:

This was a test orderded by my Dr, the blood test form says "Coeliac antibodies (TTG's). It was sent to Medlab Central at the hospital

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Where is the TTG result??

[GF-Cate]

  On 6/4/2021 at 2:47 AM, wildwitchnz said:

I recently had the dq2/dq8 test done and the rests have come back but I am super confused and I was wondering if anyone could tell me what it means? 

Expand Quote  

Ask your doctor's office to send you a copy of the complete lab results. You could also try contacting the lab directly for help interpreting the results. What you posted from your doc doesn't have enough info to interpret.

This is a link to a sample report for the DQ2/DQ8 test from a lab in the US and how it might read. The DQ2/DQ8 genetic test is also called HLA DQ2/DQ8 (HLA is human leukocyte antigen) as it is on this lab report:

https://www.questdiagnostics.com/dms/Documents/Other/17135X.pdf

This also offers a pretty decent explanation of the genetic testing/genotyping:

https://www.labcorp.com/tests/related-documents/L9048

As others have mentioned, basically what the genetic test is telling you is the likelihood of the possibility of you developing celiac disease, based on your genes - your risk factor. So if you have both DQ2 + DQ8, you have the highest risk of developing celiac at some point in your life. Having just one of those or other variations (or "alleles" - "versions of the same gene at the same place on a chromosome" - this starts to get beyond my scientific understanding :-), puts you at even lower risk. However the genetic test is best used to rule out celiac, it is not a diagnostic test.

[wildwitchnz]

  On 6/6/2021 at 4:40 PM, frieze said:

Where is the TTG result??

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This is all that is on my test results, I thought this was the ttg result? 

[wildwitchnz]

  On 6/6/2021 at 5:08 PM, GF_Cate said:

Ask your doctor's office to send you a copy of the complete lab results. You could also try contacting the lab directly for help interpreting the results. What you posted from your doc doesn't have enough info to interpret.

This is a link to a sample report for the DQ2/DQ8 test from a lab in the US and how it might read. The DQ2/DQ8 genetic test is also called HLA DQ2/DQ8 (HLA is human leukocyte antigen) as it is on this lab report:

https://www.questdiagnostics.com/dms/Documents/Other/17135X.pdf

This also offers a pretty decent explanation of the genetic testing/genotyping:

https://www.labcorp.com/tests/related-documents/L9048

As others have mentioned, basically what the genetic test is telling you is the likelihood of the possibility of you developing celiac disease, based on your genes - your risk factor. So if you have both DQ2 + DQ8, you have the highest risk of developing celiac at some point in your life. Having just one of those or other variations (or "alleles" - "versions of the same gene at the same place on a chromosome" - this starts to get beyond my scientific understanding :-), puts you at even lower risk. However the genetic test is best used to rule out celiac, it is not a diagnostic test.

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Thanks! I'm wondering if maybe there is more to my results and it hasn't come back from the lab yet. We have an app at the Drs that I can use to check all my results, get repeats etc so when my Dr adds my results to my file it then goes to the app, and the dq2/dq8 result that I posted is all she has uploaded, so it's possible that there is more to come.

[wildwitchnz]

So it turns out that I do indeed have Coeliacs. I carry the genes and all the other blood work was conclusive that it was Coeliacs. Nice to have an answer, but again my Dr isn't the most on to it. When I get 'glutened' I get all the nasties, diarrhea, bloating, wind, stomach cramps, headaches, muscle and joint aches, fluid retention (bad!) Like so bad I can even wear my shoes my feet get that swollen my last test came back not so bad, but my CRP markers were sitting at 95 😳 Dr asked if I was unwell and I said yes and explained about being 'glutenend' and she just told me to elevate my legs and rest, with paracetamol and buscopan and cyclizine until the inflammation has gone as there wasnt anything she could do to help 🤷🏼‍♀️ so yeah, not much help happening for me and it's so frustrating cos it's not just a 'sore tummy' like ppl think it is, it's my body ATTACKING itself and it's horrible and painful. After that very first post I made, those many months ago, I ended up in hospital, being tube fed, as I couldn't hold any food down and lost too much weight and my body wasn't absorbing any nutrition. Was put on a strictly gluten-free diet whilst in hospital and I've never felt better and haven't gone back, except the odd gluten mistake made by other ppl 😐

[trents]

Get a different doctor!

[wildwitchnz]

  On 11/4/2022 at 6:26 PM, trents said:

Get a different doctor!

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Where I live, getting a new Dr is like having yr toenails pulled out one by one lol they are very few and far between and my Dr is considered to be one of the best in my region, so I have to consider myself lucky I am under her and just do my own research when I need to and ask others, like on here, for their opinions and puzzle things out that way. At least knowing I can't have gluten/wheat etc has made a huge change in my life and I finally feel able to do the things I used to enjoy doing. Until some kind family member makes me a 'gluten free' dinner and forgets to tell me they used a packet gravy etc and then I'm down for the count for the next few weeks 😗

[trents]

Yeah, you really have to learn how to graciously say "Thanks, but I just can't risk it because I have been made ill too many times by well-meaning friends and family who tried to accommodate my gluten free need but were not aware of the many ways gluten is hidden in food." Either that or insist on seeing the list of ingredients used. Over time, you will develop a list of friends and family you can trust to make stuff that is truly gluten free because they "get it".

[wildwitchnz]

  On 11/4/2022 at 7:14 PM, trents said:

Yeah, you really have to learn how to graciously say "Thanks, but I just can't risk it because I have been made ill too many times by well-meaning friends and family who tried to accommodate my gluten free need but were not aware of the many ways gluten is hidden in food." Either that or insist on seeing the list of ingredients used. Over time, you will develop a list of friends and family you can trust to make stuff that is truly gluten free because they "get it".

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Absolutely! Funnily enough I trust my mother-in-law's cooking more than my own parents! Only because she bakes for a cafe in Wellington and her cookies that are gluten-free get sold along with all the other baked items she sells there, so she's really 'on to it' and I've eaten meals at her place and she's really gone the whole 9 yards to make sure everything is gluten-free. Otherwise it's my own cooking or my partners and that's it. It's just too awful spending a solid 2 weeks being sick, and not just 'ugh I have a sore tummy' sick either, it's my whole body hating on itself and it's painful and horrid and I wouldn't wish it on my worst enemy