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

What To Do Please Need Your Help!


Mama Melissa

Recommended Posts

Mama Melissa Enthusiast

Hey everyone, i recently was diagnosed with celiac disease after a bout of stomach issues and severe constipation, i am a 27 year old mom of 2 children. Of course my first reaction when finding out this disease is herditary was to have my 2 children blood tested which both came out negative,my 3 yr old daughter has for months and months now and even before tested displayed symptoms of this disease constipation complaining her belly hurts her and very moody personality with irrability.I have however made the whole house gluten free but there are times she does have gluten when out with family or if husband orders food etc .My question is do you suggest i push her peditrician for biopsy???I feel so helpless when she is hurting and there is nothing i can:(Thank you for listening!


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



Celiac.com Sponsor (A8-M):



Leah's Mom Rookie

First things first, you are Not Helpless in the matter. You are your child's best advocate. Since the biopsy is an ordeal . . .my suggestion is that since your household eating habits are already gluten free for the whole family, make sure she follows the same diet when away from home too(no cheating). Make sure you know her vitamins and meds are also gluten free. If her symptoms stop after a few months of being on a strict diet, you can assume she does have Celiac Disease or a gluten intolerance. I wish I had taken that advice 8 years ago when my daughter was three.

Best of Luck!

-Marcie

srall Contributor

First things first, you are Not Helpless in the matter. You are your child's best advocate. Since the biopsy is an ordeal . . .my suggestion is that since your household eating habits are already gluten free for the whole family, make sure she follows the same diet when away from home too(no cheating). Make sure you know her vitamins and meds are also gluten free. If her symptoms stop after a few months of being on a strict diet, you can assume she does have Celiac Disease or a gluten intolerance. I wish I had taken that advice 8 years ago when my daughter was three.

Best of Luck!

-Marcie

I wholeheartedly second this.

Skylark Collaborator

If she is mostly gluten-free the biopsy may not show anything without a few months of gluten challenge. Even if she is only gluten intolerant and not celiac, current thinking is that keeping her off gluten can keep her from eventually developing celiac. She is at risk since you're celiac and she's symptomatic. You need to put your foot down and stop her family from feeding her gluten for a while. Make it clear how much she is hurting, and that you're pretty sure gluten is the problem. As Marcie says, if her symptoms clear up on a strict diet you can be reasonably sure it's a gluten reaction.

Mama Melissa Enthusiast

thank you everyone:)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    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
      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
      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
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      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
      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.