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

Questions About My Moms Tests


Stacy0w

Recommended Posts

Stacy0w Enthusiast

I've had stomach issues my entire life, but was just diagnosed with celiac at 38. My mom has had health issues for years. Hypothyroid now hashimotos, chronic fatigue, fibro, connective tissue disorder and raynauds and constipation. She's also been deficient in D and B vitamins for years and years with no long term improvement despite megadoses and injections so she quit. So I told her to get tested for celiac. She told them to run a full celiac panel. They agreed. Then called and said all was normal. I had her go get the results and a few things weren't normal. Her cholesterol was high which it has never been before. Her T4 was a 2 (thinking it is messing with her cholesterol), but they didn't change her meds. Then for their celiac panel they ran

total iga which was 514 (norm 91-414)

Ttg iga <2 (norm 0-3)

Deamidiated gliadin igg 2 (norm 0-19)

Didn't they miss something in the celiac panel? Should they have run the deamidiated gliadin igA? I think I've convinced her to try gluten free based on all the autoimmune issues she has, but I wanted to know what others think about the labs done. Thanks in advance.


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Yes, they missed a few: tTG IgG, DGP IgA, and maybe the EMA IgA (but that is usually negative if the ttG IgA was).  They could also do the endoscopic biopsy - some people have negative tests but a positive biopsy.

 

I wish her luck with the gluten-free diet (after all testing is done).

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. - MoniqueCham replied to MoniqueCham's topic in Related Issues & Disorders
      3

      Celiac Disease, Lymphocytic colitis and Bowel rupture

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

      Malt vinegar

    3. - Scott Adams replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      55

      Supplements for those Diagnosed with Celiac Disease

    4. - Scott Adams replied to MoniqueCham's topic in Related Issues & Disorders
      3

      Celiac Disease, Lymphocytic colitis and Bowel rupture

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

    • Total Members
      133,550
    • Most Online (within 30 mins)
      7,748

    TNV
    Newest Member
    TNV
    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

    • MoniqueCham
      Thanks for your reply Scott! A long time ago I realized I didn’t fit neatly into uncomplicated celiac disease. Over the years I’ve been diagnosed and treated for SIBO, pancreatic insufficiency and diagnosed with Stage 2 liver fibrosis. I think all the complications occurred because of the refractory celiac disease. When I hit menopause my gut issues seemed to calm down and because I was stable I made the mistake of not following up with my gastroenterologist. Then other autoimmune problems flared and I tried the methotrexate. It worked like a charm for my skin condition… then my sigmoid colon ruptured. Strange but my autoimmune skin condition remains in remission after 6 months off the medication. We have a very long waiting list to get back into see my GI doctor… I was an emergency referral but am still waiting 6 months after the perforation. I need more surgery to fix a fistula that has formed and to reconnect my colon… I have a colostomy at present. I became a dietitian who specializes in bowel diseases but have never met anyone who’s had so many complications with celiac disease. I have a brother and son who also have been diagnosed. My mother had 4 autoimmune diseases including a vasculitis that eventually resulted in her death and it was my father who had the HLA DQ2 gene. Think I inherited some tendencies from each of them. Thanks again for your response… it feels a little lonely dealing with GI issues when I work so hard to remain gluten free.   
    • HelenH
      Thank.you both
    • Scott Adams
      Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction because your body is no longer accustomed to exposure. Many people report significant symptoms after accidental ingestion, including abdominal pain, diarrhea, fatigue, or flu-like feelings. You’re not alone in that experience. It may help to be especially cautious with salad dressings, chips, sauces, and restaurant foods, where malt vinegar is sometimes used.
    • Scott Adams
      A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination with hematology because of the immune cell changes involved. Focusing on nutrition is absolutely important — many people benefit from working with a registered dietitian who specializes in celiac disease to help address malabsorption, weight loss, and vitamin or mineral deficiencies. You’re doing the right thing by seeking information and support. Make sure you feel comfortable asking your care team direct questions about your biopsy results, treatment plan, and monitoring strategy — you deserve clarity and a coordinated approach.
    • Scott Adams
      I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 mg weekly is extremely uncommon. In people with celiac disease — especially refractory celiac — there can already be underlying intestinal inflammation or altered mucosal integrity, which might theoretically increase vulnerability, but there isn’t strong published evidence clearly linking stable celiac disease to a markedly higher risk of methotrexate-related bowel perforation. Other factors such as concurrent inflammation, vascular compromise, infection, steroid use, or microscopic colitis may also contribute. It would be reasonable to review the case with a gastroenterologist familiar with refractory celiac and possibly a rheumatologist, and to report the event as a potential adverse drug reaction. I’d also be very interested to hear if others in the community have had similar experiences.
×
×
  • 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.