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

It's Not What I Expected To Hear.


Gentleheart

Recommended Posts

Gentleheart Enthusiast

While I do have some definite gastro symptoms (but not D) mixed in with my main complaints, one problem I have had from the beginning is that my symptoms don't seem to follow any pattern. As much as people with uncomfortable, instantaneous D won't think so, it is honestly a bit of a help. At least you can reasonably monitor and troubleshoot when you have been glutened and also pretty much know when you have not. With me, I just feel continuously lousy most of the time for goofy reasons yet to be diagnosed. I might say that some foods seem to cause more bloating than others, but I can't honestly pinpoint anything. Add the fact that I pretty much didn't get any relief in 2 years, and I don't feel much closer to solving my problem than I did when I first started.

Except for a couple of minor tests which indicated it as well, I have based my gluten intolerance/celiac assumptions soley on my Enterolab tests. That is why I said that some people are basing their entire lifestyles on his research. I've been one of them. That's a whole lot of trust, especially if you don't observe any tangible results. Maybe that's why I'm starting to weaken a bit now.

I guess I choose to believe that the stool tests must have some validity. My results were all solidly positive, with significant malabsorption as well. I just don't know exactly what that means anymore. As much as some of us might be mad at medical doctors sometimes, as a group we have to admit that they do know some things and some are even quite brilliant. And most of them, even the experts, just don't endorse Enterolab's results. But I can certainly hang in there a little longer with my dietary restrictions until I figure out what's what.

I really appreciate all your counsel. And I plan to follow through, if I can possibly afford it and see if Lyme's might be it. It would be so refreshing to go to a medical doctor who would honestly try to find out what is wrong, without patronizing me, refusing to think outside the box or assuming I was whacko. :blink:


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



Celiac.com Sponsor (A8-M):



Gentleheart Enthusiast

Just read your post, mftnchn.

One comment. For all my discomfort, I really don't have any joint pain whatsoever. Does that cast serious doubt on a Lyme's diagnosis? I've heard that it is a major symptom of the disease. Thanks.

CarlaB Enthusiast
Just read your post, mftnchn.

One comment. For all my discomfort, I really don't have any joint pain whatsoever. Does that cast serious doubt on a Lyme's diagnosis? I've heard that it is a major symptom of the disease. Thanks.

I didn't have any joint pain whatsoever until five years ago, so, no it's not always there. Even though I did have joint pain eventually, it never played a big role in my disease, other issues significantly outweighed the joint pain.

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. - captaincrab55 replied to Dawn Meyers's topic in Related Issues & Disorders
      9

      Vaccines

    2. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      9

      Vaccines

    3. - ShariW replied to glucel's topic in Coping with Celiac Disease
      5

      potato chip cross contamination

    4. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      9

      Vaccines

    5. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      9

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,843
    • Most Online (within 30 mins)
      7,748

    Gabriela Fraser
    Newest Member
    Gabriela Fraser
    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

    • captaincrab55
      Hi Dawn,   Back in the Fall of 2019 with Covid looming I considered getting a pneumonia vaccine.  I went as far as getting in line and reading the pamphlet and saw the warning about not getting it if you ever had a reaction to diphtheria.  I instantly recalled a tetanus booster shot in 1971 that caused a severe reaction.  Tetanus booster shots include diphtheria.  I haven't had a tetanus shot since, but recent lab results show that I have many timed the immunity required.  Good Luck.  
    • trents
      Since we don't know what you reacting to when you get vaccinated, we can't say whether or not the pneumonia vaccine will cause a reaction. Is there some common ingredient in these vaccines that is causing a reaction. I mean, with many vaccines the antigen is delivered via a solution containing albumin (chicken egg protein). Some people are allergic to chicken egg protein so they can't take those vaccines. That kind of thing. When you say your "numbers are off the chart", what numbers do you refer to? Are you referring to celiac disease antibodies?
    • ShariW
      Cape Cod potato chips are gluten-free, according to the company. I've never had a problem with these.
    • Dawn Meyers
      I'm 63  Thank you for the article. I have worked with Dietitian at Mayo and also had breath testing done. They felt I was following a strict gluten-free diet along with eliminating sugar alcohol and chicory root. Also don't eat a lot meat, eggs and peppers. Because I get so sick I use only gluten-free products for my skin food medicine my pet food is gluten-free and I live alone so all my cooking stuff is all brand new prior to being diagnosed.  I buy only organic certified gluten free products and if not sure  look up or just don't eat or use. The Dermatologist at Mayo gave me a list of gluten-free products that I can use. ( personal products,  laundry detergent, I use vinegar and baking soda for cleaning ) . I ask family and friends to not bring  anything  in to my home that has gluten in it. I have tried  everything and my numbers still off the charts.   So as for the pneumonia vaccine I question if it has anything in it that will react negative in me? 
    • trents
      Dawn, yes, once the genes that give the potential for the development of celiac disease are "turned on" so to speak, they will be on for the rest of your life. It is not something that is cured or comes and goes but something that must be managed. Eliminating major sources of gluten from one's diet is pretty straight forward but many don't realize the multitude of places and ways gluten is hidden in the food supply and sneaks its way into our eats. So, eating "lower gluten' is easy but attaining a consistently and truly gluten free state is much harder and requires diligence. I am linking this article that might be of help to you in that regard:  
×
×
  • Create New...