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FaithInScienceToo

Casein Antibodies

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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


"Get busy living

or get busy dying."

From: The Shawshank Redemption

--------------------------------------------------------------

gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point

-------------------------------------------

Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.

------------------------------------------------------------------------------------------

ADDTIONALLY:

I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days

gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit

---------------------------------------------------------------------

I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)

and

"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!

**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts

again!)

SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

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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:

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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


"Get busy living

or get busy dying."

From: The Shawshank Redemption

--------------------------------------------------------------

gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point

-------------------------------------------

Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.

------------------------------------------------------------------------------------------

ADDTIONALLY:

I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days

gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit

---------------------------------------------------------------------

I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)

and

"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!

**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts

again!)

SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

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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: http://www.mdheal.org/leakygut.htm

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.


Lee

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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.

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