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

"no Symptoms" And Gf Diet


kaylee

Recommended Posts

kaylee Rookie

Hi all,

after a period of refusing to get tested because she "knew" she didn't have celiac disease, my mother has just been diagnosed. Her doctor has made the suggestion to her that since she has no symptoms (only osteoporosis, hypothyroidism, arthritis, chronic allergies and sinusitis, balance problems and chronic fatigue), she doesn't have to go gluten free. She agrees. Obviously in the long term it will be her decision, but I would like to give her something to read on the subject, since my telling her what I have learned about this issue clearly isn't persuasive enough.

So, could anyone point me in the direction of a medical journal article that covers the subject of what people with no classic celiac symptoms should do regarding the gluten free diet? Any input will be most appreciated. Thanks,

Kaylee


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



Celiac.com Sponsor (A8-M):



jenvan Collaborator

Uh! What a stupid doctor ! I'm sure you're frustrated right now! Does your mother know about some of the other long-term effects, regardless of "symptoms"? Such as diabetes, cancer, lymphoma, serious nerve damage...

Perhaps these articles would be a good for her to read. They do each affirm that fact that some Celiacs will notice no symptoms, and those noticed are widely varied...and that the consequences if you ignore the disease, are serious. And they show that whether you have symptoms or not, your actions to go gluten-free should be the same. Good luck !!

Open Original Shared Link

Open Original Shared Link

KaitiUSA Enthusiast

What an ignorant doctor...sounds like rest of the doctors that we've had experiences with. He doesn't know anything obviously about celiac and the problem is alot of these people take what the doctor says like gospel. She needs a new doctor...I can't believe that diagnosed but o you have no symptoms so don't follow the diet...wow now how smart is that <_<

There is a current thread on here with percentages of risks if not adhering to the diet, if you can't fid it email me and I'll send you the link.

Does she know that she has now things that are connected with untreated celiac?

kaylee Rookie

Hi and thanks for your replies-

I'm going to send my mother the links you provided. Also thanks Kaiti for the heads-up about the other thread. Lots of people are obviously dealing with symptom issues not to mention doctor issues. The two are clearly linked. Having a doctor who is uninformed can make it very hard for the patient to feel committed to the only available treatment when symptoms are (ambiguous (a little knowledge is a very dangerous thing ...). More info may do the trick in my mom's case, but I think there's also some kind of strong urge on her part to discount the whole thing that's running pretty deep, for a reason I just can't quite grasp. Anyway, as many have already said, it's a personal journey and a personal choice.

Thanks,

Kaylee

Eliza13 Contributor

No symptoms??? I quote: "she has no symptoms (only osteoporosis, hypothyroidism, arthritis, chronic allergies and sinusitis, balance problems and chronic fatigue)". Sounds like symptoms to me!!!

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. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    2. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Dried Chickpeas

    4. - ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

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

    • Total Members
      133,434
    • Most Online (within 30 mins)
      7,748

    LexiBusch
    Newest Member
    LexiBusch
    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

    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
×
×
  • 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.