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

Casein Antibodies

FaithInScienceToo

Recommended Posts

FaithInScienceToo Contributor
FaithInScienceToo
Posted
  • Author
Gina - just don't forget that even if you can get casein under control there is still the issue of mimicry that i have mentioned - probably to the point of boredom.  The two proteins gluten and casein are virtually identical. The implication for celiac disease patients that the immune system would read these two as being the same the way it reads food protein and similarly structured body protein - i.e. cells - as being the same.  Read up on mimicry.  I will stay away from dairy. I don't have brain cells to spare.  Claire

<{POST_SNAPBACK}>

Hi, All -

Thanks, Claire for continuing to push these concerns -

I now plan to retest for antibodies to casein after about 6 months of both gluten-free/CF...

If they come back positive, I'm off casein forever...

If they are 'negative' at that point, though, I will then do a 4-day rotational intro of dairy WITH enzyme usage...If symptoms return, it's good-bye casein...

If symptoms do NOT return at that point, I will AGAIN retest for casein antibodies (via Enterolab's stool test) to make sure the antibodies didn't come back (even if I am symptomless)... If the antibodies are positive, 'good-bye casein'...

If they come back negative, I plan to continue to re-test a few times per year, to make sure of it. Plus, I still would keep to the 4-day rotational plan religiously 'forver.'

Obviously, I very much want to find out if those enzymes can allow me to have dairy occasionally...As far as I can tell....the enzymes are supposed to break it down so that it no longer mimics gluten...... that's my understanding of why 'enzyme therapy' can help people re-introduce foods (EXCEPT GLUTEN)...

If it works for me, I'll be happy to not have to worry about accidental casein-poisoning, too...Plus, it would make it easier to eat out if I don't need to eliminate 100%.

It'll be 'some time' before I have my answers...in the meantime...I have joined the ranks of the gluten-free/CF ...and am learning more inventive ways to cook ;-)

Gina

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

Celiac.com Sponsor (A8-M):


  • Replies 54
  • Created
  • Last Reply
Claire Collaborator
Claire
Posted
Hi, All -

If it works for me, I'll be happy to not have to worry about accidental casein-poisoning, too...Plus, it would make it easier to eat out if I don't need to eliminate 100%.

It'll be 'some time' before I have my answers...in the meantime...I have joined the ranks of the gluten-free/CF ...and am learning more inventive ways to cook ;-)

Gina

<{POST_SNAPBACK}>

Hi Gina,

Well you wait for your thing and I'll wait for mine. All the way to January for the NIH results. I suppose it will go quickly but it looks a long way out there right now. I don't see any way out of Gluten-free Casein-free for me regardless of diagnosis. I actually eat very healthy but I am fighting weight loss because all my healthy food is low calories.

I don't need to tell you to ' hang in there' - this woman is llike a dog with a bone! Claire :lol:

FaithInScienceToo Contributor
FaithInScienceToo
Posted
  • Author
I don't need to tell you to ' hang in there'  -  this woman is llike a dog with a bone!    Claire :lol:

<{POST_SNAPBACK}>

LOL....Yep...that decribes us both to a t...a t-bone, that is ;-)

Love, Gina

  • 9 months later...
lindalee Enthusiast
lindalee
Posted
Gina,

Since you have a GI appt shortly, you might want to read up a bit on Leaky Gut Syndrone in case that might raise some questions you could ask. There are many LGS sites; this one is pretty typical in terms of viewpoint: Open Original Shared Link

The interesting thing re LGS for me is that it is a slightly different view of the causes of a lot of our symptoms and their treatment. If you have good insurance there is a rather simple test for LGS that only involves drinking a few oz's of a sweet tasting liquid and then providing a urine sample for analysis a few hours later. Supposedly it works pretty well. The test is sometimes referred to as the lactulose/mannitol test. I've never had it done, but it sounds like it could provide some interesting info.

George

Thank you for this info.

Nancym Enthusiast
Nancym
Posted

Casein is very glue-y! I ordered some pure casein from a company that sells various protein powders and it was nasty stuff to work with.

I wonder if anyone gets intolerance to whey? That's the other protein in milk.

Gina, I would advise not trying to replace the dairy with something else, like soy. Soy is pretty tough for a lot of us too and it'd be yucky if all your hard work came to naught because of soy.

Archived

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

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


  • Member Statistics

    • Total Members
      127,986
    • Most Online (within 30 mins)
      7,748
    Vickie Clancy
    Newest Member
    Vickie Clancy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
×
×
  • Create New...