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

Sometimes I React Sometimes I Dont


Krystens mummy

Recommended Posts

Krystens mummy Enthusiast

Ok so my daughter is gluten intollerant/ celiac no diagnosis but positive dietary response and we have celiac in the family.

I started getting sick in January of this year and went gluten free in July

I feel so much better now and yes like most people without a definate piece of paper to state it I have cheated on my diet to see what would happen.

Sometimes I will have just a quater of a piece of bread and within twelve hours I will vomit and I lose weight with numerous other symptoms

Sometimes though it seems that I can eat a whole weetbix with little or no reaction. This usually happens after I have been good for a while. I wonder if I react when there is a build up in my system. Does anyone else get this. I did have a negative blood test but got too sick while waiting for a doctor to do an endoscopy so gave up


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

There were times when I didn't have as bad a reaction, or it was a different reaction than I expected. That would make me think it was something else, and not gluten. But I established that the reaction was somewhat dependent on the type of grain, origin of the grain, type of product, etc.

I'm also self-diagnosed, and sometimes I do start to wonder - just for a moment. But I only need to remind myself of all the various symptoms I had.

Then again, if you had that piece of paper, but didn't always react, you might think the doctor was wrong. After all, doctors misdiagnose people all the time. Or if the doctor said you didn't have Celiac, but you still react, does that paper really matter more than what your body tells you?

With all your symptoms, and how much better you feel without gluten, can there really be any doubt?

spunky Contributor

I"m self-diagnosed too... and there've been times I've been tempted to try a little and just see what happens.

But then I've read that many diagnosed people can never be sure just how much they might react when exposed... it probably depends on many other factors going on in your gut, general health, etc., at the time of exposure, just how much or little a person might react.

I think the whole gluten thing is a lot more complicated than anyone really understands...so... when I feel tempted to "test," I just compare my worst days now with my best days just about 3 years ago... and I realize I've got a good enough answer without the need to investigate any further. I.e., if you're better off gluten than you were on... that's pretty good indication, and probably more accurate than any test, whether self-induced or medical.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help

    2. - Silk tha Shocker posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help

    3. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    5. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,474
    • Most Online (within 30 mins)
      7,748

    Silk tha Shocker
    Newest Member
    Silk tha Shocker
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • Silk tha Shocker
      What is the best gluten free scanner app? I have the "gluten-free Scanner" app. I scanned an almond joy and it says it contains gluten when the package is labeled gluten free
    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
×
×
  • 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.