Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Got The Gene Test Back For Daughter


TrillumHunter

Recommended Posts

TrillumHunter Enthusiast

She is HLA DQ 2,3 subtype 2,7 So that means she has the most common celiac gene and the sensitivity gene. A double whammy. I'm not surprised at all as she was one point under the cutoff with her blood work and she has lots of symptoms. Even she said she thought it would be positive. Still, she cried a lot and was pretty upset. Luckily I was diagnosed in April and I've been doing really well. She has been able to see there are lots of yummy gluten free meals. We are opting not to do the biopsy and will just take her gluten-free. If she is not any better in six months we'll investigate her symptoms.

I don't understand what the subtypes mean. I've been reading this evening but I haven't made sense of it yet. Also, it said that each of her parents carry the sensitivity gene. So I wonder if I should share that with my sister in law? Her son has lots of issues that are unexplained.

Thanks for listening. My boys are next....


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



Celiac.com Sponsor (A8-M):



Darn210 Enthusiast

Just a comment that my daughter's GI said during an evaluation of my son's blood work (which had mixed results). The ranges for what is diagnosed as Celiac were established based on data from adults . . . just something to think about . . . why so many kids with symptoms may not get the diagnosis.

mykidsmommy Rookie
She is HLA DQ 2,3 subtype 2,7 So that means she has the most common celiac gene and the sensitivity gene. A double whammy. I'm not surprised at all as she was one point under the cutoff with her blood work and she has lots of symptoms. Even she said she thought it would be positive. Still, she cried a lot and was pretty upset. Luckily I was diagnosed in April and I've been doing really well. She has been able to see there are lots of yummy gluten free meals. We are opting not to do the biopsy and will just take her gluten-free. If she is not any better in six months we'll investigate her symptoms.

I don't understand what the subtypes mean. I've been reading this evening but I haven't made sense of it yet. Also, it said that each of her parents carry the sensitivity gene. So I wonder if I should share that with my sister in law? Her son has lots of issues that are unexplained.

Thanks for listening. My boys are next....

I did Enterolabs for my DD. Your DD has the same exact genetic result as my 2 1/2 DD. Yeah, I'm not thrilled at all about that double whammy; there is history on my side but none that we knew of on my husband's side. He is Hispanic and eats a LOT of corn based whole food meals so I thought we really had nothing to worry about there or we would have heard of some family history by now. He was somewhat in shock. He and I show no symptoms and have no digestive problems - are in good health.

I'm interested in reading any more responses to this thread about the subtypes because I don't understand it at all myself.

We have an appt with a ped. gastro in 2 weeks and I plan on asking her then - will share any info I get.

Juliet Newbie

Just to let you know, according to Enterolab there is really only one gene set (I think it's HLA-DQ4) that isn't related to gluten sensitivity or Celiac Disease, and it's linked only with people of Asian or Native American descent. So, if you are not full blooded Asian or Native American, you will have at least one gluten sensitivity gene. But this doesn't mean that a gluten sensitivity will definitely present itself if someone has these genes. Same goes for Celiac Disease - 30-40% of the population has a Celiac Disease gene, but only 1% of the population will actually contract the disease. The doctor who runs Enterolab theorizes that gluten (and casein) isn't good for anyone - not even for the people who have no gluten sensitivity or Celiac genes. But there are several doctors and insurance companies who do not agree with this theory. I have my own opinions, and although I think the position may be a bit extreme, at the same time, I wouldn't be surprised if he is proven correct.

mouth Enthusiast
She is HLA DQ 2,3 subtype 2,7 So that means she has the most common celiac gene and the sensitivity gene. A double whammy. I'm not surprised at all as she was one point under the cutoff with her blood work and she has lots of symptoms. Even she said she thought it would be positive. Still, she cried a lot and was pretty upset. Luckily I was diagnosed in April and I've been doing really well. She has been able to see there are lots of yummy gluten free meals. We are opting not to do the biopsy and will just take her gluten-free. If she is not any better in six months we'll investigate her symptoms.

I don't understand what the subtypes mean. I've been reading this evening but I haven't made sense of it yet. Also, it said that each of her parents carry the sensitivity gene. So I wonder if I should share that with my sister in law? Her son has lots of issues that are unexplained.

Thanks for listening. My boys are next....

I am sorry to say that my daughter hasn't had the HLA'S. her doctor for some reason thought my insurance wouldnt cover it. well if found out it is and that means more blood work for her.. You need to do the endoscopy- for 1 reason- if only to follow up. it is to check to see if the damage the glutens caused is getting any better.

my daughter was not happy with this but understood this.. it is to keep her healthy and make sure everything is working the way it should..

What state r u in?

I am in NY and there is a good dr here and I know of a good one in MD.. a friend of mine needed to use he is a celiac dr and researcher.. her daughter was not responding to gluten-free diet.. and they new she was celiac. he found the problem quite quickly..

yes, you need to share it w/your sister in law and have yourself and your husband tested.

vvvvvvglglg

lynn

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Travel Celiac's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Test says no, but body says Yes?

    2. - Scott Adams replied to DMCeliac's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Canned tomato sauce, ricotta?

    3. - PlanetJanet replied to Travel Celiac's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Test says no, but body says Yes?

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

      Modified Food Starch

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

      Modified Food Starch


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,714
    • Most Online (within 30 mins)
      7,748

    mariah311
    Newest Member
    mariah311
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @PlanetJanet, Sorry to hear about your back pain.  I have three crushed vertebrae myself.  I found that a combination of Thiamine, Cobalamin and Pyridoxine (all water soluble B vitamins) work effectively for my back pain.  This combination really works without the side effects of prescription and over-the-counter pain meds.  I hope you will give them a try. Here are articles on these vitamins and pain relief... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ And... Role of B vitamins, thiamine, pyridoxine, and cyanocobalamin in back pain and other musculoskeletal conditions: a narrative review https://pubmed.ncbi.nlm.nih.gov/33865694/
    • Scott Adams
      Here is the info from their website. If you don't trust them, you may find products that are labelled "gluten-free," but I don't see any reason to believe there is any gluten in them. Hunt's Tomato Paste: https://www.hunts.com/tomato-sauce-paste/tomato-paste   Hunt's Tomato Sauce: https://www.hunts.com/tomato-sauce-and-paste/tomato-sauce  
    • PlanetJanet
      Hi, trents, Thanks for responding! One book I read is called, Doing Harm, by Maya Dusenbery.  She has wonderful perspective and insight, and it's all research-based.  It's about how women can't get treated.  Everyone should read this!  I wouldn't mind reading it again, even.  She believes that women are so busy taking care of families, working, etc., that we are more likely to ignore our pain and symptoms for longer.  Men have women bugging them to go to the doctor.  Women don't have anyone telling us that.  We don't have time to go.  Providers think we are over-emotional, histrionic, depressed, have low tolerance to pain...Men get prescribed opioids for the same symptoms women are prescribed anti-depressants.  My car crash in January 2020 made going to the doctor a full-time job.  I grew up with 2 rough and tumble brothers, played outside, climbed trees.  I was tough and strong, pain didn't bother me, I knew it would heal.  But do you think I could get treated for back pain--as a woman?  I am so familiar now with the brush-offs, the blank looks, the, "Take your Ibuprofen," the insinuation that I am just over-reacting, trying to get attention, or even, "Drug Seeking."  Took almost 2 years, but what was happening was Degenerative Sacroiliitis.  I couldn't walk right, my gait was off, effected my entire spine because gait was off.  I had braced myself with my legs in a front-impact, slightly head-on crash with someone who made a left turn in front of me from the opposite direction.  I finally had SI Joint Fusion surgery, both sides.  It's not a cure. I have given up on trying to get properly treated.  There is so much pain with these spine issues caused by bad gait:  scoliosis, lithesis, arthropathy, bulged disc, Tarlov cysts.  And I can't take anything because of my bad tummy. Not that I would ever hurt anyone, but I can relate to Luis Mangione who couldn't get treated for his back injury. I feel so alone.
    • PlanetJanet
      They say maltodextrin is gluten-free, even if it's made from wheat, because the gluten is processed away.  It makes no difference to my body.  I still get uncontrollable flatulence and leakage.  Happens every time, even if I refuse to believe it will happen.  Once I was taking Gas-X chewables to hang around with people I was visiting and staying with, to make sure I would feel safer and more comfortable.  WRONG.  I forgot to read the label. I didn't realize it till after I left and went home--MALTODEXTRIN.  I was miserable the whole time. The second gastroenterologist I saw made the tentative diagnosis of microscopic colitis.  Usually occurs in women over 60, I was 59, had been in a crash, (2020) was taking alot of NSAIDS, muscle relaxants.  Had constant diarrhea, gas, leaking.  Unbearable, and I didn't know it was NSAIDS.  I was scheduled for two-way endoscopy, mouth to butt, but they wanted $2,000 up front.  Finally, had a colonoscopy in 2022, 10 biopsies, didn't find a thing!  MC can go into remission, which I was, of course, desperate to do.  No more NSAIDS, tried to cut down on all the other pain killers, everything, chemicals that I knew triggered me.  So, no, they didn't find anything.  So sad that we have to make ourselves sicker and more injured to get a proper diagnosis! Microscopic colitis is being seen concurrently with gluten problems.  MC can be triggered by NSAIDS, SSRI's, all kinds of things. https://my.clevelandclinic.org/health/diseases/17227-microscopic-colitis Some links for maltodextrin health effects: https://pmc.ncbi.nlm.nih.gov/articles/PMC6409436/#:~:text=Altogether%2C these findings show that,the development of intestinal inflammation. https://www.mdedge.com/internalmedicine/article/193956/gastroenterology/maltodextrin-may-increase-colitis-risk  
    • PlanetJanet
      Titanium dioxide is that chemical in vitamins, toothpaste, and processed white foods that is the whitener for the pill coloring.  It is inflammatory for me.  I have an intestinal reaction to it, every time. https://www.webmd.com/diet/titanium-dioxide-in-food https://pmc.ncbi.nlm.nih.gov/articles/PMC11295244/#:~:text=EFSA concluded that titanium dioxide,uncertainties in recent toxicological studies.
×
×
  • Create New...