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

Gluten Challenge Survival


baggotlane

Recommended Posts

Guest nini

Andrew, you are on a Celiac support board, so obviously our radar is going to be on Celiac and gluten intolerance as the cause of most everything.

I know this is not always the case, but in a lot of cases it is the most likely scenario.

I do believe that in all cases the first place you should look is your diet, sure it may not be gluten that is the problem, it very well may be something else entirely. But always look at diet first as the root cause behind health issues. If after thoroughly checking out your diet for allergens or intolerances and you still don't have the answer, look at environmental or structural causes.


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

While I'm sorry to hear that you don't yet have an answer to the difficulties you're facing, I agree with you - this board does too often state that it's celiac disease. I'd like to point out, however, that you too a much more complete path to determining that it wasn't than the vast majority of people on this board. ;-) You played by the rules for getting a more realistic "negative".

A true negative for celiac disease *is* elusive, but you did the right things to try to track it down. Coming in with an incomplete blood work panel, a week trying the diet with uncertain change, and a single biopsy spot that showed no damage is VERY different from having a full panel of negative antibody tests, a half-dozen negative biospy spots, and half a year to learn and implement the diet; the last of those items being the most important. Most people coming here are in the first boat, with the shaky work, and the only point is that they haven't actually done much to get a solid no. Your approach is the, unfortunately, right way to go to absolutely rule it out when there are celiac-like symptoms. (I say unfortunately because it takes so long and is so complicated.)

But you are right - if 1% of the population has celiac, 99% doesn't. Some of that 99% are bound to find their way here as well, and we all have to be careful not to call every complaint the same.

loraleena Contributor

Hi Andrew. I am not sure what all the physical problems you have are, but I think it is good you are looking into bacterial issues. You may also want to look into parasites and yeast (candida overgrowth) Good luck!

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Manaan2 replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Hidden Gluten in distilled vinegar

    2. - BIg Nodge replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Opinions on my test results/symptoms

    3. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    4. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    5. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,854
    • Most Online (within 30 mins)
      7,748

    Keithyboy
    Newest Member
    Keithyboy
    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

    • Manaan2
      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
    • Dawn Meyers
      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
    • Dawn Meyers
      Mayo is great and yes I had the same experience.  They take you seriously and they check everything.  I to wish other Dr's cared that much. I sure hope it's not refractory celiac also.  
×
×
  • Create New...