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

Test Results - Help - I Need The Gluten Smartie Police

jmd3

Recommended Posts

jmd3 Contributor
jmd3
Posted

My DH had a test several weeks ago, and we were finally called today.

The nurse told me that they don't understand the test and had to call someone to figure out what it meant. And they are still confused.

On the paper with the test results it says :

" Tell patient he has a genes found in people + celiac disease (gluten allergy) However, it can be found in the normal population as well If having diarrhea or joint pain Try gluten - free diet otherwise NTD " I can't believe he called it a gluten allergy - ???? The doc wants me to call the hospital lab for interpretation ( they are closed )

Now we don't eat gluten in our house anymore - because of myself being celiac and my daughter too. So he shouldn't have any antibodies?? Now he does occasionally eat gluten when out, but very, very rarely.

It has the two genes - off to the side Celiac Genetic HLA-DQ2/DQ8

But the other tests they took :

HLA Class II

Donor DNR

DR Locus - 7, 12

DRW Locus 52, 53

DQ Locus 2, 7

Method PCR

Can someone tell me what the test results mean, and what Locus is please? When I had the test results it came back in different form.

thanks in advance!

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

HLA Class II =

major HLA antigens are essential elements in immune function:

Different classes have different functions

Class I antigens (A, B & C) - Present peptides from inside the cell (including viral peptides if present)

Class II antigens (DR, DP, & DQ) - Present phagocytosed antigens from outside of the cell to T-lymphocytes

Locus: In biology and evolutionary computation, a locus (plural loci) is a fixed position on a chromosome, such as the position of a gene or a biomarker (genetic marker). A variant of the DNA sequence at a given locus is called an allele. The ordered list of loci known for a particular genome is called a genetic map. Open Original Shared Link

Looks to me like he is positive for HLA DQ 2.

Open Original Shared Link

Which lab did the tests?

jmd3 Contributor
jmd3
Posted
  • Author
HLA Class II =

major HLA antigens are essential elements in immune function:

Different classes have different functions

Class I antigens (A, B & C) - Present peptides from inside the cell (including viral peptides if present)

Class II antigens (DR, DP, & DQ) - Present phagocytosed antigens from outside of the cell to T-lymphocytes

Locus: In biology and evolutionary computation, a locus (plural loci) is a fixed position on a chromosome, such as the position of a gene or a biomarker (genetic marker). A variant of the DNA sequence at a given locus is called an allele. The ordered list of loci known for a particular genome is called a genetic map. Open Original Shared Link

Looks to me like he is positive for HLA DQ 2.

Open Original Shared Link

Which lab did the tests?

Thank-you, I will check out the urls

The mayo clinic ran the test for our local hospital

Does this mean he does have celiac, or just the gene, we are so confused. He doesn't really have any symptoms, but we were trying to figure out just how bad our kids could be by putting our genes together. He asked the doc for the test, and he said ok, but noone knows what it means....humm

The doctor doesn't know what to say to him or what to do unless he has joint pain or diarrhea. i guess he's done his job. He had the blood work drawn back in Oct, he has had the test results since 11/1 back, we just found out today.

Our hospitial lab doesn't usually give results, the day he took the test, they didn't even know what the test was.

aikiducky Apprentice
aikiducky
Posted

It just means he has the genes for potentially developing celiac. It doesn't mean he will necessarily ever actually have celiac, just that he has the right genes for it. About 30% (or something close to that number) of the population has these genes, but obviously not all of those people have celiac.

Celiac doesn't get inherited in a straightforward way like blue or brown eyes, so you can't really tell from parents genes how much of a risk your children have of developing it.

They didn't test for antibodies at least from what you posted above, just the genes.

Pauliina

nora-n Rookie
nora-n
Posted

Sounds like he has DQ2 and 7 and no other tests were done. They do not mean much as 30-40% have these genes.

nora

ravenwoodglass Mentor
ravenwoodglass
Posted
" Tell patient he has a genes found in people + celiac disease (gluten allergy) However, it can be found in the normal population as well If having diarrhea or joint pain Try gluten - free diet otherwise NTD " I can't believe he called it a gluten allergy - ???? The doc wants me to call the hospital lab for interpretation ( they are closed )

I would interpret this as saying:

"Tell patient he has a genes found in people + celiac disease (gluten allergy)"

We found the gene and also the antibody reaction.

This:

"However, it can be found in the normal population as well"

Or in forms of illness that we don't yet recognize as gluten induced.

and this:

"If having diarrhea or joint pain Try gluten - free diet otherwise NTD"

If your not having symptoms that we clearly recognize as gluten just eat gluten till you do. Once you do get noticeablly sick then you can do the diet.

Unfortunately the damage done to nervous systems, brain, liver and other body functions can be seriously effected long before GI symptoms get severe or before doctors recognize that the joint pain is more than 'normal' with aging.

You say your DH is gluten light? He may want to try being totally gluten free for a bit. He may end up being amazed how many 'annoying' little things are not there anymore.

jmd3 Contributor
jmd3
Posted
  • Author
If your not having symptoms that we clearly recognize as gluten just eat gluten till you do. Once you do get noticeablly sick then you can do the diet.

Unfortunately the damage done to nervous systems, brain, liver and other body functions can be seriously effected long before GI symptoms get severe or before doctors recognize that the joint pain is more than 'normal' with aging.

HOW TRUE -This is me - AND so many others here on this site! Thanks - you interpreted everything they said just perfect, I understand that! And amazingly how true it was! Thank-you again!

You say your DH is gluten light? He may want to try being totally gluten free for a bit. He may end up being amazed how many 'annoying' little things are not there anymore.

Yes, hubby is gluten light, we have no gluten in the house...but he does eat wheat at work - however - he will be off work for several months - His buddies sent him a care box of gluten goodies with cheeses and meat snacks because I make nothing or have anything with gluten here!! We already removed those goodies to send back to his work to put into the cafeteria for others to snack on.

He will not have gluten for at least 2 full months, we will see what happens

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

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,393
    • Most Online (within 30 mins)
      7,748
    HeckelCrazy
    Newest Member
    HeckelCrazy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.