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

"experts Needed"


taterbug

Recommended Posts

taterbug Newbie

WOW - never heard of celiac disease until 20 month old is failing to thrive (20 lbs and counting, backwards) and gluten seems to be final diagnosis (based on blood work and symptoms - endosocpy was inconclusive). Every web site I have been too about celiac has been loaded with valuable information for us. Now, calling all parents who have young children with celiac disease - what are your tips? Easy enough right?! I want to put 100% energy into her diet and getting her healthy. Already joined local support group and going to hear Danna Korn next month. I feel overwhelmed, same as you have felt I am sure. We are just happy to have a treatment plan after 2 months of testing everything from cystic fibrosis, renal tubular acidosis, abnormal kidney, metabolic issue, etc... Thanks! Your help and comments are greatly appreciated!


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



Celiac.com Sponsor (A8-M):



ashlee's mom Rookie

I am so glad you were able to find out what is wrong and now can eliminate gluten! It sounds like you are on the right track! If you are going to see Danna Korn, I assume you have already read her book! That helped me a lot. I also use the Incredible, Edible, Gluten free cookbook for kids a lot. The good news is that even though this is all overwhelming now, it will be second nature soon. The not so good news is that it will probably be frustrating until then!

Some questions so we can help you better...Will your whole family be gluten-free or just your daughter? We are mainly gluten-free, but we adapt things so that they are similar where necessary. Like if we are having spaghetti she has her own noodles. What kind of pots and pans do you have? How well does she eat? Do you need suggestions on trying to get her to eat more?

Anyway, good luck, and hang in there and know it will get easier! It was explained to me like learning to drive. It is overwhelming at first, but then it gets easier. But the minute you stop paying close attention, watch out!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,023
    • Most Online (within 30 mins)
      7,748

    Tubbybooboo
    Newest Member
    Tubbybooboo
    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

    • 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.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.