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

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

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
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

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

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
" 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
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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.