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

Will The Doctor Insist On A Biopsy?

NoName33

Recommended Posts

NoName33 Newbie
NoName33
Posted

My husband was diagnosed with Celiacs Disease in February. My 6 year old daughter has no symptoms, however, I asked her pediatrician to test just to put my mind at ease. Unfortunately her results came back positive, they were:

Tissue Transglutamin IgA - 121 (>20 is positive)

Deam Gliadin Pep Abs - 31 (>20 is positive)

She has an appointment with the ped. GI next month. My question is - based on your experience will the doctor pressure me to do a biopsy?

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

It really depends on the doctor...I was never biopsied either. Her numbers are quite high, and we know it is genetically linked so with her dad having it, I on't see a need. She has celiac. ((Hugs)) to you mom. That's great you had her checked, you have probably saved her many complications and health problems that could have arisen had she continued as an untreated celiac. Yay Mom!

Best wishes.

tom Contributor
tom
Posted

...

She has an appointment with the ped. GI next month. My question is - based on your experience will the doctor pressure me to do a biopsy?

Not sure I understand the 'pressure me' part. It's a pretty easy procedure that 6 yr olds can handle just fine.

Are you thinking of a downside that I'm missing?

shadowicewolf Proficient
shadowicewolf
Posted

Because generally they have to knock a patient out when they do that test.

ravenwoodglass Mentor
ravenwoodglass
Posted

The choice to biopsy or not is really up to you. If your ped will give her the diagnosis she will need for schools to take her need to be gluten free seriously then if you are reluctant to endo her you could choose to forgo it. Talk to your ped about your concerns. If you are going to choose to do the endo do be sure to keep her on gluten until that test is done and make sure that the GI is celiac savvy and will take enough biopsies. Damage can be patchy especially in children.

NoName33 Newbie
NoName33
Posted
  • Author

Not sure I understand the 'pressure me' part. It's a pretty easy procedure that 6 yr olds can handle just fine.

Are you thinking of a downside that I'm missing?

Sorry, I should have explained better. *I* think it is unnecessary based on the fact that her Dad has it and her blood test results. Also, she is a very high anxiety kid and will probably not handle it well.

NoName33 Newbie
NoName33
Posted
  • Author

The choice to biopsy or not is really up to you. If your ped will give her the diagnosis she will need for schools to take her need to be gluten free seriously then if you are reluctant to endo her you could choose to forgo it. Talk to your ped about your concerns. If you are going to choose to do the endo do be sure to keep her on gluten until that test is done and make sure that the GI is celiac savvy and will take enough biopsies. Damage can be patchy especially in children.

I am very lucky in regards to her school - it is a small private school and they are familiar with the disease already based on my conversation with her teacher (there are staff members with it). They do not have a lunch program, you have to supply a lunch every day. And the tables are cleaned every day right before they eat lunch. They do not allow treats to celebrate birthdays either.

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

I am very lucky in regards to her school - it is a small private school and they are familiar with the disease already based on my conversation with her teacher (there are staff members with it). They do not have a lunch program, you have to supply a lunch every day. And the tables are cleaned every day right before they eat lunch. They do not allow treats to celebrate birthdays either.

there is always college to look forward to, even a public HS, or bigger private school.

There may be issues of accomadation.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748
    bostonbell
    Newest Member
    bostonbell
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.