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

Hello Everyone!

jswog

By jswog
in Coping with Celiac Disease

Recommended Posts

jswog Contributor
jswog
Posted

Hi! I'm sure many of you are new enough to not remember me. I've lurked a bit, but haven't really posted much for quite a while now. I've been busy visiting the boards at Babycenter.com! I'm now 36 weeks pregnant and give all the credit to going gluten free (and, thereby, to you all here as well for all of the help and support you gave me in doing so). If anyone is interested, I can share the whole testimonial (I have posted it on the pregnancy board here...), but there are definately too many things to think it's coincidence. Hubby and I have a little boy due August 19 who looks to be developing 100% perfectly, despite my age and a few other potential issues. I'm also maintaining iron and other levels even throughout the pregnancy better than I have at any other point in my life. I have had severe morning sickness and am still on prescription meds to keep it under control. We're totally looking forward to meeting our new little man in just a few short weeks!

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

Congratulations and welcome back!! I do remember you. I'm so happy for you and your husband. You are going to be so busy now you won't believe it! But feel free to post your testimonial because you had quite a road as I recall and it may be of help to someone who is struggling like you did. Hope all continues to go well for you and thanks for letting us know how you are doing!

lynnelise Apprentice
lynnelise
Posted

I do remember you being on the boards! Congrats on your pregnancy! :)

1974girl Enthusiast
1974girl
Posted

Congratulations! Fertility issues is the main reason that keeps me going gluten-free with my silent celiac dd. So glad it all is working out. I hope you will try to breast feed. There is a lot if research that shows that may help protect the development of celiac and type 1 diabetes. I did not do it with my 1st and she got celiac. I did for a year with #2 and she is fine despite still having the genes. So just try! No regrets like me!

Jestgar Rising Star
Jestgar
Posted

Yay!!!!

We really should have a bulletin board or sumpin' of all 'our' babies. :huh:

GottaSki Mentor
GottaSki
Posted

Thanks for sharing your great news.

Welcome Back and Congratulations!

IrishHeart Veteran
IrishHeart
Posted

I remember you very well --and I am so very happy for you, J!!!

yaaaay!! Congrats!

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

Yay!!!!

We really should have a bulletin board or sumpin' of all 'our' babies. :huh:

I second that!

Roda Rising Star
Roda
Posted

I remember you too. I was wondering when the baby would come. He'll be here before you know it!! So happy for you.

Roda Rising Star
Roda
Posted

Congratulations! Fertility issues is the main reason that keeps me going gluten-free with my silent celiac dd. So glad it all is working out. I hope you will try to breast feed. There is a lot if research that shows that may help protect the development of celiac and type 1 diabetes. I did not do it with my 1st and she got celiac. I did for a year with #2 and she is fine despite still having the genes. So just try! No regrets like me!

I'm very pro breastfeeding and think it was the best choice for both of my boys. I cherrish the times we had alone bonding. My youngest son would nurse and play with my hair. To this day when he is tired or not feeling well he plays with it. So sweet.

Well, I breast fed my celiac son for 16 months. In hindsite I think he had celiac as a baby but didn't show positive on blood work until he was almost 6 years old. He was first tested when he was 3 after I was diagnosed. All his symptoms as a baby and toddler make sense now. I was unknowingly gluten light while breastfeeding for the first 10 months. I avoided dairy, rice, oats, and tree nuts. He reacted to all of those. I ate a lot of fresh fruit/veggies and meat but was not gluten free. I also fed him barley cereal.

Oldest son was breastfed for 14 months. He is not celiac but is non celiac gluten intolerent.

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
      133,434
    • 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
      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.