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

I had a dq2/dq8 test


wildwitchnz

Recommended Posts

wildwitchnz Apprentice

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 :)

Screenshot_20210604-141252.png


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



Celiac.com Sponsor (A8-M):



trents Grand Master
22 minutes ago, 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 :)

Screenshot_20210604-141252.png

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 Grand Master

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 Apprentice

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 Apprentice
22 hours ago, 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.

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

7 hours ago, 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?

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 Grand Master

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 Apprentice
19 hours ago, 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?

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


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



Celiac.com Sponsor (A8-M):



wildwitchnz Apprentice
On 6/4/2021 at 3:13 PM, 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.

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 

 

Screenshot_20210605-140729.png

Screenshot_20210605-140723.png

Screenshot_20210605-140649.png

Screenshot_20210605-140636.png

Screenshot_20210605-140714.png

trents Grand Master
1 hour ago, 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

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

wildwitchnz Apprentice
33 minutes ago, trents said:

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

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 Grand Master

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 Apprentice
Just now, 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.

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 Community Regular
19 hours ago, 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

Where is the TTG result??

GF-Cate Enthusiast
On 6/3/2021 at 10:47 PM, 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? 

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.

image.png.0dc8d800ef200f17e1a084a1129aab24.png

wildwitchnz Apprentice
10 hours ago, frieze said:

Where is the TTG result??

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

wildwitchnz Apprentice
10 hours ago, 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.

image.png.0dc8d800ef200f17e1a084a1129aab24.png

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.

  • 1 year later...
wildwitchnz Apprentice

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 Grand Master

Get a different doctor!

wildwitchnz Apprentice
5 minutes ago, trents said:

Get a different doctor!

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 Grand Master

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 Apprentice
Just now, 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".

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

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
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
×
×
  • 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.