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

15 year old

Janwill

Recommended Posts

Janwill Rookie
Janwill
Posted

My son was diagnosed celiac in May 2017 and been gluten free since April. He still has mucus in his bowel movements even though he eats gluten free only. Has anyone else got these symptoms. 

Going to the Dr tomorrow as getting  no answers off his paediatrician. I am wondering if he got intolerance to something else as well. 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I am sorry that your son is ill.  It is time to have his antibodies checked to see if they are coming down as recommended by celiac experts as part of follow-up care.  You might think he is gluten free, but maybe he is getting hidden sources of gluten.  

Open Original Shared Link

If his result are fine and celiac disease is not the cause, your GI can look into other issues (e.g. IBD: Crohn’s or Ulcerative Colitis).  Consider a food and symptom diary.  Is he off dairy?  Lactose Intolerance is common in celiacs.  It can be temporary.  Of course he can react to any food.  I hope you and your doctor can figure it out.   

 

Janwill Rookie
Janwill
Posted
  • Author

No we still.on gluten free and yes that s the plan to ask Dr for blood test. And see if it's high still. 

He year 11 high school and exams soon. He missing school and get no help from school. Will ask Dr tomorrow for blood test. 

Thanks 

cyclinglady Grand Master
cyclinglady
Posted

My daughter, who does not have celiac disease, is also in the 11th grade.  Since you said exams instead of finals, I assume you are not in the US where a 504 plan can accommodate anyone with a disability (celiac disease counts).  This includes tudors, more time to complete tests, etc.  Do you have a comparable plan? 

Honestly, our school lunches (public) are horrid.  My kid has not purchased a lunch since the 1st grade.  I would NOT trust them to keep a celiac child safe.  Sad but true!  My girl who has celiac disease even works for the district’s food service and does not eat their food.  If course it might be different where you live.  

I hope you find answers.  

The learning for celiac disease is VERY steep.  Teens also like to fit in.  

May was just a few months back. It can take a up  to a year or longer to heal.  So patience is necessary.  Hang in there Mom!  

Janwill Rookie
Janwill
Posted
  • Author

We in the UK he takes a pack lunch and have asked for a health plan so wait and see. Not easy when he taking his gcse and he wants to do well. Thanks for the advice 

cyclinglady Grand Master
cyclinglady
Posted

I would stick to a very basic gluten-free diet as recommended by Dr. Fasano and other celiac experts.  It would not hurt for a short amount of time and might get him through his exams.  

This is the study about dealing with Trace Amounts of Hidden Gluten (not saying your son has non-responsive celiac disease) Look at Table 1 found a few pages into the report.  The diet is basically, plain meats and fish, veggies, fruit, rice, etc.  — nothing really processed.  It is what I do when I get “glutened” until I recover.  

Open Original Shared Link

 

Archived

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

Go to topic listing

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

      Confused about HLA-DQ Celiac gene test result

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

      Confused about HLA-DQ Celiac gene test result

      Thank you, that is helpful!
    3. Scott Adams
      - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

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

      Dried Chickpeas

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

      Confused about HLA-DQ Celiac gene test result

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

  • Member Statistics

    • Total Members
      133,433
    • Most Online (within 30 mins)
      7,748
    emmelyn
    Newest Member
    emmelyn
    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
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      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
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you, that is helpful! 
    • Scott Adams
      Confused about HLA-DQ Celiac gene test result

      By Scott Adams · Posted

      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
      Dried Chickpeas

      By Aretaeus Cappadocia · Posted

      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
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      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.