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

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
      131,064
    • Most Online (within 30 mins)
      7,748

    Lexxi Hartless
    Newest Member
    Lexxi Hartless
    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

    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...