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

3 Yrs gluten-free, What Tests To Do?


lcarter

Recommended Posts

lcarter Contributor

Been gluten-free for 3 1/2 yrs [and DF for 25yrs] except for rare accidents. I went on the diet on my own out of pure desperation and frustration with doctors after years of their neglect and lack of knowledge about digestive disorders. The final motivation to hunt for an answer on my own was an ER visit with intestines almost totally swollen closed -- fortunately, I talked the surgeon out of removing part of my intestine at the time. Before starting the gluten-free diet, I could check off nearly all the Celiac symptoms listed, including seizures and peripheral nueropathy. I feel very certain that it is Celiac, and not just Gluten Intolerance, because my symptoms were so dramatic and varied. But, sometimes I think it would be nice to have medical verification. Enterolab looks like a possible alternative to having to go back on gluten for 4-6 weeks so that an endoscopy can be done...but which test do you all recommend in a situation like mine?


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

After 3.5 years gluten free, you can't test for celiac disease. Because, technically (if you're gluten free), you're in remission. (Celiac disease being the only autoimmune disease we can *stop occurring*, by eating strictly gluten free.) The tests all look for antibodies (whether in the blood or in the stool) or the damage caused by the antibodies (via biopsy). If there are no antibodies circulating (and haven't been for a while, in the case of stool testing), there's nothing to detect. It's not that you don't have celiac disease, it's that you can't test for it, because it's only active if you eat gluten.

You can do a genetic test, but there are severe limitations for using that to determine if you've got the known genes, but there is a small percentage of biopsy proven celiacs who do not have the currently known genes, and most people who have the genes do not test positive for celiac disease. (30% of the population have the genes, only 1% of the population has celiac disease.) And, that doesn't even begin to cover trying to determine if you're "merely" gluten intolerant, which seems to be a similar, but slightly different beast.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,792
    • Most Online (within 30 mins)
      7,748

    AthinaGR
    Newest Member
    AthinaGR
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jordan23
      Ok so know one knows about cross reactions from yeast,corn, potatoes, eggs, quinoa ,chocolate, milk, soy, and a few more I forgot.  There all gluten free but share a similar structure to gluten proteins. I use to be able to eat potatoes but now all of a sudden I was stumped and couldn't figure it out when I got shortness of breath like I was suffocating.  Then figured it out it was the potatoes.  They don't really taste good anyways. Get the white yams and cherry red 🍠 yams as a sub they taste way better. It's a cross reaction! Google foods that cross react with celiacs.  Not all of them you will cross react too. My reactions now unfortunately manifest in my chest and closes everything up . Life sucks then we die. Stay hopeful and look and see different companies that work for you . Lentils from kroger work for me raw in the bag and says nothing about gluten free but it works for me just rinse wellllll.....don't get discouraged and stay hopeful and don't pee off god
    • K6315
      Hi Lily Ivy. Thanks for responding. Did you have withdrawal? If so, what was it like and for how long?
    • trents
      Welcome to the forum, @Doris Barnes! You do realize don't you that the "gluten free" label does not mean the same thing as "free of gluten"? According to FDA regulations, using the "gluten free" label simply means the product does not contain gluten in excess of 20 ppm. "Certified Gluten Free" is labeling deployed by an independent testing group known as GFCO which means the product does not contain gluten in excess of 10 ppm. Either concentration of gluten can still cause a reaction in folks who fall into the more sensitive spectrum of the celiac community. 20 ppm is safe for most celiacs. Without knowing how sensitive you are to small amounts of gluten, I cannot speak to whether or not the Hu Kitechen chocolates are safe for you. But it sounds like they have taken sufficient precautions at their factory to ensure that this product will be safe for the large majority of celiacs.
    • Doris Barnes
      Buying choclate, I recently boght a bar from Hu Kitchen (on your list of recommended candy. It says it is free of gluten. However on the same package in small print it says "please be aware that the product is produced using equipment that also processes nuts, soy, milk and wheat. Allergen cleans are made prior to production". So my question is can I trust that there is no cross contamination.  If the allergy clean is not done carefully it could cause gluten exposure. Does anyone know of a choclate brand that is made at a facility that does not also use wheat, a gluten free facility. Thank you.
    • trents
      @Manaan2, have you considered the possibility that she might be cross reacting to some food or foods that technically don't contain gluten but whose proteins closely resemble gluten. Chief candidates might be dairy (casein), oats (avenin), soy, corn and eggs. One small study showed that 50% of celiacs react to CMP (Cow's Milk Protein) like they do gluten.
×
×
  • Create New...