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
  1. cnazrael89

    cnazrael89


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,673
    • Most Online (within 30 mins)
      7,748

    Joan Stein
    Newest Member
    Joan Stein
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I just want to add that many celiacs do not have any obvious symptoms, but still have the same health risks if they continue to eat gluten. Unless all of her first-degree relatives, including yourself, are screened for celiac disease, there is not way to be sure that other relatives don't also have it (some studies have shown that up to 44% of first degree relatives also have celiac disease). This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      I don't know of any that are certified gluten-free.
    • Pua
      Aloha, could use a little insight from those who are familiar with celiac. I’m starting to think my dad , me and my son all have it As a kid I had severe stomach cramps and constipation. I would sleep on the bathroom floor all night often and the pain waves would end in diarrhea. I vomited often. Easy bruises, vitamin d&b12 deficiencies, asthma,  iron deficient anemia, chronic sickness, fluid in ears, hearing loss, adhd, depression, and as I got older extremely heavy periods, mood swings, and severe allergies where doctors would prescribe me epipens saying  I had a reaction but allergists would say I’m not allergic to anything. I’ve been so sick my whole life until I randomly decided to cut out our gluten because I was so tired of doctors. Felt great and all my symptoms started going away.    when my son was born people started making us meals and I ate gluten again and was breastfeeding. My son was always projectile vomiting, colic, acid reflux, screaming all night and day and doctors did what they did with me and treated symptoms separately. He’s 14 months now and always severely constipated, has stomach pains, poor sleeping, always had red eyes, loses weight, fluid in ears, rashes, 4 ear infections in 2 months. we don’t feed him dairy but started giving gluten when he was about 11mo old.  doctors just say to give him formula still , MiraLAX, acid reflux meds, no dairy and I feel like I’m symptom chasing just like I was my whole life.  has anyone had experience with toddlers having celiac? I didn’t do the blood test because poor guy has been under so much testing and er visits and I stopped giving him gluten 2 weeks ago so I didn’t want to do it for a negative test.  I also had all the same issues he’s having when I was a baby    I don’t want to eat gluten for long periods just for a positive test but has anyone been in this boat? Does celiac get progressive because I believe my dad has it too and his health is even worse than mine  mahalo       
    • trents
      Welcome to the forum, @MomofGF! I know you said you are not looking for a dx but the symptoms you describe scream of celiac disease as opposed to NCGS (Non Celiac Gluten Sensitivity). Celiac disease does not damage the stomach lining but rather the lining of the small bowel, i.e., the intestinal area right below the stomach. This is the area where all of the nutrition from what we eat is absorbed. This lining is made up of millions and millions of microscopic finger-like mucosal projections that create an enormous nutrient absorbing surface area. Celiac disease causes chronic inflammation of this lining (when gluten is consumed) that wears down the finger-like mucosal projections or causes "blunting" of them as we say. This greatly reduces the nutrient absorbing surface area of the small bowel. All this explanation to make the point that long term undiagnosed and untreated (by a gluten free diet) celiac disease typically results in vitamin and mineral deficiency related medical problems and other symptoms, even for those who are eating well. Several of your daughter's symptoms and health issues, such as hair loss, fatigue and irregular menses could well be caused by celiac nutrient malabsorption. And nausea and diarrhea are certainly classic celiac disease symptoms. The problem is, as she has already been eating gluten free, an official diagnosis of celiac disease would require her to undertake a "gluten challenge" for a period of weeks. Given the severity of her reaction to gluten consumption, that does not seem advisable. I would suggest you consider getting her genetically tested for possessing the genes that have been connected with celiac disease. We know that two genes, RLDQ 2 and RLDQ 8, are primary markers associated with the development of celiac disease. Since 40% of the population possesses one or both of these genes, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and, therefore, push the diagnosis toward NCGS instead.  To answer your original question, let me assure you, as a moderator and one who has participated on this forum for many years, all of the symptoms your list in connection with your daughter's gluten-related disorder are common to the celiac/gluten sensitive community with the possible exception of the epidermal brown spots. Oh, yes, for an adult in often takes two years or more for thorough healing of the small bowel lining once going gluten free. Less for young people, probably. Regular mistakes in gluten exposure will extend that of course. I also wanted to add that it sounds like your daughter should be on some high potency vitamin and mineral supplements. And I'm talking about more than a multivitamin. All supplements must be gluten free as wheat starch can be used as a filler in pills.
    • MomofGF
      I also forgot to add, her menstrual cycle is not regular. She gets maybe 5 periods a year. 
×
×
  • Create New...