Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Shouldn't We Be Better By Now?


Gluten Free Girls

Recommended Posts

Gluten Free Girls Apprentice

My 6 year old, 12 year old and I were all diagnosed with Celiac disease at the end of June. We will be meeting with our doctor at the end of this week to see if our numbers have dropped at all. I am scared to death that we will go to this visit and find out that we aren't doing things correctly. My girls immune systems seem to be worse rather than better and my youngest still has the extremely dried and cracked lips as well as thinning hair. I think I'm desparate for a sign that we're headed in the right direction. My girls and I have never suffered any gastrointestinal symptoms so we haven't been able to use this as a measurement. Any insights? I know that in general it could take a year to repair our intestines, but I need some sign that we're heading in the right direction.


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



Celiac.com Sponsor (A8-M):



Booghead Contributor

Well all I know is that: Perhaps your daughter has thinning hair and dry skin(cracked lips) from a thyroid problem. Which is very commonly associated with gluten intolerance. The good news is that you don't have any gastrointestinal symptoms because they are awful.

I will give you the general rundown of things a lot of people don't know have gluten in them or gluten on them. (Because you are new I don't know how much you know).

Toasters-gluten lives in toasters you may need a new one.

Pills, Medications, and Supplements-very commonly have wheat in them. Benefiber has gluten in it.

Lotions, Shampoos, and Conditioners- All 3 of mine had "hydrogenized wheat product" which is gluten. Made me itchy all the time.

Any food fried in a fryer that has breaded food fried in it has gluten contamination.

Thats the things I think people look over quite frequently, maybe more info and we can help you!

Jenny (AZ via TX) Enthusiast

Booghead has a lot of good advice. It may also be because the damage to all of your intestines was severe. It took me longer than 6 months to feel good again so it really just depends on the person. Unfortunately, there is only so much you can do as the body simply needs time to heal. Continue to be diligent in not letting gluten sneak in and hopefully you will all feel better soon! Hang in there. It really does get better.

rosetapper23 Explorer

It sounds as though you might all be suffering from vitamin, mineral, and/or hormonal deficiencies. Your daughter with the thinning hair and dry lips should be checked for all deficiencies, especially B12, zinc, and manganese. If she hasn't been checked for diabetes, this should also be done since celiacs share a gene with diabetics. Doctors should alwayscheck each disease when a child presents with one of them.

As for doing things "right," it takes time to discover all the ways that we can get cc'd. Your daughters would especially be at risk because they probably visit friends and attend school. All you can do is your best....and, over time, your health should improve.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,658
    • Most Online (within 30 mins)
      7,748

    DML2493
    Newest Member
    DML2493
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @ARutherford! Have you considered that your child may have gluten intolerance/celiac disease? It's not an allergy, it's an autoimmune response to the ingestion of gluten. It cannot be diagnosed by allergy testing but there are some specific antibody blood tests that any physician can order to check for it. Ask for a "total IGA test" and a "TTG-IGA" test. 
    • ARutherford
      My child keeps getting rashes & stomach aches & l think it’s an allergy to gluten but l need to get a general allergy test done to confirm for sure what it can be. Getting an allergy test seems difficult, l keep hitting dead ends! I live in Christchurch & want to know if anyone can help with who to go to? Thanks
    • trents
      Good idea, @LynnM! That would be helpful to other celiacs who find themselves on the more sensitive end of the spectrum. You might also want to send them information about how to initiate the process with GFCO. But just a word of caution here, don't be surprised if the company is reluctant to pursue this certification as it can tie their hands with regard to changes in formulation in the future. Manufacturers often make ingredient decisions not only based on desired product outcomes but on cost factors. It can also put them at a liability risk should some ingredient supplier introduce an ingredient that was cross-contaminated with gluten without knowledge and cause someone to have a reaction. Testing for gluten-free certification is not done as frequently as consumers imagine and products can and do get out of spec at times. And once you slap a gluten-free certified label on a product, you are instantly open to possible liable suites. 
    • LynnM
      Hi Everyone. I just heard back from my son's GI doc and nutritionist. SHIELD products ARE gluten free. I am going to ask the company to Pursue gluten-free certification. 
    • Scott Adams
      Your experience highlights a common frustration in celiac disease diagnosis—discrepancies between lab results, biopsy findings, and clinical symptoms. The "localized mild nodular mucosa" noted in your duodenal bulb could indeed be significant, even if the overall pathology was deemed negative. Nodularity in the duodenum is often associated with lymphocytic infiltration, a feature seen in early celiac disease (before villous atrophy develops) or in conditions like H. pylori infection, chronic inflammation, or even food sensitivities (e.g., gluten or dairy). Since you had strongly positive celiac labs (e.g., TTG-IgA, EMA, or DGP), this nodularity might reflect an early or patchy immune response to gluten that wasn’t severe enough to meet traditional biopsy criteria (Marsh 3 damage). Some studies suggest nodular mucosa can precede classic celiac changes, especially in seropositive patients. Given your lab results and symptoms, it’s possible you have non-celiac gluten sensitivity (NCGS) or are in an early stage of celiac where damage isn’t yet widespread. False-negative biopsies aren’t uncommon due to sampling error (celiac can be patchy) or misinterpretation of subtle changes. If you’re still symptomatic, you might discuss repeat testing (e.g., HLA-DQ typing if not already done, or a gluten challenge with both serology and biopsy) or consider a capsule endoscopy, which can visualize more of the small intestine. Alternatively, H. pylori testing or a trial of strict gluten-free diet with symptom monitoring could provide clarity. Your case underscores the importance of correlating labs, histology, and clinical response—not just relying on biopsy alone. A second opinion from a celiac-savvy GI could be worthwhile!
×
×
  • Create New...