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

Please Read - No Celiacs Can Have Soy!

srokie

By srokie
in Food Intolerance & Leaky Gut

Recommended Posts

sandsurfgirl Collaborator
sandsurfgirl
Posted

Yes, and by no means am I saying that my doctor is the all-knowing being who could never be wrong.

But don't you guys think that - in the event she is right - I would be quite negligent as a fellow celiac not to share information that could make you all feel better?

I think it's wise to share information when it is proven to be valid. That means lengthy studies on varied populations and all of that scientific jazz. People come up with theories about all sorts of diseases all the time and maybe they look at a few things and say "Eureka! I've found the answer." It may or may not be. You have to be skeptical and careful about what information you take as the truth because ALL doctors (well most anyway) are confused about celiac or at least they don't agree with one another.

Testing is unreliable and if there's anything ALL celiacs know it's that celiacs are not ALL alike. There is such a wide range of symptoms, or lack of symptoms, levels of sensitivity from being able to cheat with no consequences to getting deathly ill from glutened shampoo.

You just cannot make a sweeping statement like that and expect us to all say "Okay, well out with the soy then!" I would bet all the bun-less hamburgers I will ever eat in the future that this research isn't going to turn up to be what this PhD (not medical doctor) is telling people that it is. There is too much anecdotal evidence to the contrary, let alone scientific evidence.

I think your heart is in the right place and it's wonderful that you want to share but people just aren't going to get up in arms about this and they are going to question it especially when it's coming from someone who isn't even a medical doctor. You can get a PhD in all sorts of things but that doesn't make you a "doctor" who treats patients and practices medicine. A PhD student doesn't do residency and work in a hospital, etc. Plus what is her PhD in anyway?

And since so many doctors have misdiagnosed us over the years or been totally clueless about what to do once they do diagnose us, we're all going to be skeptical of doctors period.

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

Celiac.com Sponsor (A8-M):


  • Replies 103
  • Created
  • Last Reply
sandsurfgirl Collaborator
sandsurfgirl
Posted

Well now I feel like a dork. I didn't realize this was such an old thread. I saw it at the top and replied.

:lol::lol::lol:

Lisa Mentor
Lisa
Posted

Well now I feel like a dork. I didn't realize this was such an old thread. I saw it at the top and replied.

:lol::lol::lol:

Not to worry! This is one or our "Young and the Restless" threads...they never die. Hopefully, they just fade away. :blink::D

Might be time to close this one. B)

psawyer Proficient
psawyer
Posted

This topic's "best before" date was about three years ago. I am closing it.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,390
    • Most Online (within 30 mins)
      7,748
    Ozz lock
    Newest Member
    Ozz lock
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...