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

Gene Questions?


momof2sn

Recommended Posts

momof2sn Apprentice

My daughter was diagnosed in May with Celiac Disease, she has the HLA-DQ8 and we just found out today that so does my husband. He is having no symptoms and is always the healthiest in our house. I want to know what the next step is? Does he have his levels checked?? What have you done?? Any opinions??


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



Celiac.com Sponsor (A8-M):



~alex~ Explorer

It's probably a good idea for both your husband and yourself to get a celiac panel since you have a diagnosed first degree relative. I think celiac genes are quite common and having one doesn't assure having celiac but makes it a possibility. If your husband tests negative he can always keep in mind that celiac is a possibility and if he ever becomes ill he can be retested.

momandgirls Enthusiast

If he's healthy, I would do nothing. Upwards of 50% of this country's population carries the gene for celiac disease - many will never actually develop the disease. Just because you carry the gene for celiac does not mean that you have the disease. Gene testing can rule out a diagnosis of celiac but cannot rule one in.

kevieb Newbie

since we have 3 girls with celiac disease, our doctor has recommended that we test everyone in the family every 3 years or so. only one of our kids has had gene testing done---and he carries one of the celiac genes but has no active disease. our doctor's recommendation with him is that we test him yearly----or sooner if he develops symptoms.

happygirl Collaborator

All Celiac experts recommend that ALL first degree relatives are tested, REGARDLESS of symptoms. Lack of symptoms does not mean "no" Celiac. Dr. Peter Green says that most Celiacs are actually silent Celiacs.

momof2sn Apprentice
All Celiac experts recommend that ALL first degree relatives are tested, REGARDLESS of symptoms. Lack of symptoms does not mean "no" Celiac. Dr. Peter Green says that most Celiacs are actually silent Celiacs.

Yeah, that is what I am worried about. I don't want us to not know about his levels, because I would hate for him to be 50 and finally have symptoms and then he has really damaged his body and put himself at risk for even more problems. Would he need to see a GI or can he just go to a regular doctor?? Our ped GI recommended the gene testing and is now kind of holding up her hands and letting us figure out what to do since she only deals with kids. I don't want her to treat my husband just give us the direction we need to take next.

Archived

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

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    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

    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
×
×
  • 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.