Casein Antibodies

[FaithInScienceToo]

Hi - Lots of questions below - feel free to pick and choose, if you know anything...

I am totally in the dark on casein antibodies and if they can go down, etc, even though I tried HARD to google for info:

Anyway....

I was told by Enterolab, back in Feb, that I had a positive sensitivity to casein.

I only went gluten-free...have put off casein-free...still have loose stools, and some gas (nothing compared to before going gluten-free, though) but no diarrhea...

Is a 'positive' result on casein a permanent state, or can I hope to be able to safely consume small amounts of it, after being gluten-free AND casein-free for a while?

Also, I will be seeing my GI on Tuesday to find out the results of my 9 months-gluten-free Celiac Panel results during my 6-month check up with him. Can I ask him to order a 'normal' BLOOD casein test? has anyone had one done? If so, which one?

Oh...

My York labs finger prick blood test came back positive for casein ....and gluten...but ONLY for those 2, thank goodness, but gluten is hard enough to give up...do I also 'need' to give up casein, too?

Since Entero and York already said casein is not good for my immune system, am I just in denial about the casein thing, and about my hopes that I can 'safely' consume 'some' casein still...parmesan cheese, especially... ?

What exactly can casein do to me, if I keep eating it???

AND, is there a supplement out there that works to break it down, so that it won't harm me? I saw one on-line...do they work? Anyone know?

Should I try it and re-test eventually?

That's my current thought...

Thanks!

Gina

[cornbread]

From what I understand (please anybody correct me if I'm wrong), a casein intolerance (as determined by the enterolab test or similar antibody test) is a life-long thing, just like gluten intolerance. Casein can do the same damage as gluten except it's very rare that it damages the intestinal villi. It can still cause trouble with the immune system though, and I expect therefore going gluten free but not casein free would mean a much slower recovery from the gluten's damage, or maybe you can never properly heal if you're still consuming casein.

The pills you're talking about, I've only ever heard of for lactose. Casein is the milk protein whereas lactose is the milk sugar, and the pills can help break that down, but the casein I don't think we have a pill for. If we did I don't see why we wouldn't have one for gluten too, as the two proteins are apparently very similar in design.

I have read however of some episodes of gluten intolerant people becoming sensitive to casein because the body mistakes the casein protein for gluten, as they're structurally very similar. So in this case I'm not sure if this 'phantom' intolerance would go away.

I became sensitive to casein after I cut out gluten, and yesterday sent off for a second enterolab casein test, just to determine that it's casein and not lactose. I think it is though, the symptoms are exactly like my gluten ones (non-GI) whereas lactose intolerance is very much a GI issue I believe.

Hope this helps! I will try and find a link to the place I read about the casein intolerance being life-long.

[Claire]

Hi -  Lots of questions below - feel free to pick and choose, if you know anything...

I am totally in the dark on casein antibodies and if they can go down, etc, even though I tried HARD to google for info:

Anyway....

I was told by Enterolab, back in Feb, that I had a positive sensitivity to casein.

I only went gluten-free...have put off casein-free...still have loose stools, and some gas (nothing compared to before going gluten-free, though) but no diarrhea...

Is a 'positive' result on casein a permanent state, or can I hope to be able to safely consume small amounts of it, after being gluten-free AND casein-free for a while?

Also, I will be seeing my GI on Tuesday to find out the results of my 9 months-gluten-free Celiac Panel results during my 6-month check up with him. Can I ask him to order a 'normal' BLOOD casein test? has anyone had one done? If so, which one?

Oh...

My York labs finger prick blood test came back positive for casein ....and gluten...but ONLY for those 2, thank goodness, but gluten is hard enough to give up...do I also  'need' to give up casein, too?

Since Entero and York already said casein is not good for my immune system, am I just in denial about the casein thing, and about my hopes that I can 'safely' consume 'some' casein still...parmesan cheese, especially...  ?

What exactly can casein do to me, if I keep eating it???

AND, is there a supplement out there that works to break it down, so that it won't harm me?  I saw one on-line...do they work? Anyone know?

Should I try it and re-test eventually?

That's my current thought...

Thanks!

Gina

<{POST_SNAPBACK}>

Hi there. Congratulations.

The response from cornbread is excellent. Sorry to say that casein is with you for life but that is what all the research I have done has turned up. She is, I believe, right about the villi. I know positively that she is right about the gluten/casein similarity. For that reason it would seem wise to stay away from it. Also anthing that is causing your body to mount an immune reaction has the potential to damage body cells.

I find dairy harder than gluten to give up but I have done so. Claire

[Nevadan]

Gina, your situation sounds all too familiar. I, too, tested positive for gliadin and casein with Enterolab and York. (York testing also found a few more which I've listed on a separate post). The only recognisable symptom I've found related to casein is a very painful splitting of the skin on the tips of my fingers. After researching casein, I found that it is structured much like gliadin; therefore, provides a similar challenge to the body. I also found several references connecting casein to autoimmure diseases such as arthritis, much like gluten proteins. I also found references reporting that casein can cause leaky gut which can open up the door to other food sensitivities and autoimmune diseases. It generally sounds like more bad news for some bodies.

From a more philosophical point of view, humans, and only some, are the only mammal that continues to consume milk after weaning. Maybe there's a message there. Also milk without all those calcium and Vit D additives required by the USDA is a pretty worthless source of nutrition (just like wheat flour) - we've all been sold a bill of goods by the cow/milk/wheat producers in concert with the USDA. Another example of the mythology of milk I found is that drinking milk for treating reflux/heartburn/stomach ulcers is a really bad idea - initially briefly the acid level in the stomach decreases but shortly thereafter, it increases with a vengenance due to the milk.

I went CF about a month after going gluten-free. I find CF somewhat more difficult, but fortunately I am not sensitive to either soy or rice so I alternate soymilk and ricemilk for my morning cereal (gluten-free) which is the only milk I consume in direct form. Just like gluten, casein lurks everywhere, but I've been able to avoid it without too much trouble.

I would like to hear any feedback re dealing with the results of York testing. Did any eliminations resolve any symptoms? etc

George

P.S. I, too, have faith in science - just wish a little more of it was applied to gluten sensitivity and other food sensitivities instead of developing pills to treat symtoms.

[tarnalberry]

If the casein antibodies are caused by a leaky gut caused by the celiac, then perhaps after a number of month off of both of them, your system could tolerate casein again. But, yes, for at least a few months (I'd start with 6), you do need to go casein free. There aren't any supplements that will reliably digest all of the casein you could consume, so I wouldn't rely on those either.

Yeah, giving up casein is tough - I find it harder than gluten, but I don't find gluten *that* hard to go without these days. And I retested again recently (just a dietary challenge, I haven't gone the blood/stool test route) to discover my system doesn't like evenn small quantities, but the benefit you get from feeling better all day long outweights the pleasure of a single piece of cheese! :-)

[FaithInScienceToo]

Hi, ALL (George, Tiffany, Clair, and cornbread ;-) )

Thanks for all of the info -

It's seeming obvious to me that I need to let go of casein, for the time being...

I will have to set a target date for myself as to when to do so.

1/1/05 was the day I went gluten-free, so maybe 1/1/06 should be my CF date...

that way, I can begin to cut back...and find out how to 'replace' it in my diet.

I am very tempted to do a re-test for antibodies to casein, with York, or thru my GI, after a while off of it...

I see my doc tomorrow afternoon, and I will ask him what he thinks...

About the supplement I found on-line that is supposed to help break-down casein...

I am unable to find it now...although I ordered some...and I cannot find any e-mail confirmation

Anyway, when it arrives, I'll look it up again, and tag on about it - just as an 'FYI'...

I just did a search about casein...

I found loads of support sites for going CF

This little article was interesting, in particular:

Open Original Shared Link

Casein...another glue...like gluten

OK...well...

THANKS, AGAIN!!!!

I love this board, and all of those who help out here -

Have a great week,

Gina

PS - Thanks, Claire, for the "Congrats!" note

[Claire]

If the casein antibodies are caused by a leaky gut caused by the celiac, then perhaps after a number of month off of both of them, your system could tolerate casein again.  But, yes, for at least a few months (I'd start with 6), you do need to go casein free.  There aren't any supplements that will reliably digest all of the casein you could consume, so I wouldn't rely on those either.

Yeah, giving up casein is tough - I find it harder than gluten, but I don't find gluten *that* hard to go without these days.  And I retested again recently (just a dietary challenge, I haven't gone the blood/stool test route) to discover my system doesn't like evenn small quantities, but the benefit you get from feeling better all day long outweights the pleasure of a single piece of cheese! :-)

<{POST_SNAPBACK}>

Hi Tiffany - we all do a lot of wishful thinking.

Casein antibodies are not caused by leaky gut. The casein protein gets into the blood stream via leaky gut. The physiology of leakg gut is complex and sort of becomes a viscious circle. I do believe that, as a percaution if nothing else, casein like gluten should go for good if you have tested positve for reaction. Because of the molecular similiarity of the two proteins - i.e. gluten and casein - the chances of triggering an immune response to casein would seem to be high. A classic case of mistaken identity. The potential for cell damage is as real then as the gluten threat. The sturcture of gluten doesn't change. Tcells will always see it the same way. The structure of casein doesn't change either.

In the end it is a personal decision. However, the absence of overt symptoms doesn't mean that there isn't trouble brewing. I had no hint until it was too late, how much damage was being done. Claire

[elisabet]

Gina,now that you are not casein free yet,order a test for both Igg and Ige,If Igg is high you can have casein in moderation(every 4 days),but if Ige is high ,you must eliminate casein for good.

best of luck, and congratulation once more!

[elisabet]

sorry,some times both Igg and Ige are elevated,like my son.and it means you should eliminate it religiously.

[Nevadan]

If the casein antibodies are caused by a leaky gut caused by the celiac, then perhaps after a number of month off of both of them, your system could tolerate casein again. 

<{POST_SNAPBACK}>

While researching casein, I found several references reporting that casein can create a "leaky gut" without any help from celiac disease - it's essentially a parallel path to gut damage. Goggle "leaky gut" and you will find several websites with pretty good evidence that casein is quite damaging to a high percentage of people, even without celiac disease. Put casein and gluten together and for a number of people with the genetic disposition, there's big touble. I'm not so sure it's really a good idea to try to hang onto casein consumption.

I wouldn't doubt that latose intolerance is just the body's attempt to stop people from consuming milk. Taking to lactaids,or whatever, to circumvent LI may just be another case of taking a med to cover up a symptom instead of dealing with the real root cause. Just a thought.

Anyway I found the "leaky gut" search really interesting.

George

[FaithInScienceToo]

Thanks for the new posts.

George - two things:

1) I think that you, and others who tagged on, are probably right about my not being able to safely consume casein once I have had a positive antibody test...and since it it so similar to gluten. I will keep researching, but everything I am now finding seems to tell me to forget about it...

Another reason I now feel that I should give it up is because I have been diagnosed "ADD" - and I have been reading in the past hour that gluten AND casein produce by-products that are morphin-like and mess with the brain and CNS - guess that's why I don't want to 'give it up'...it may also explain why others on here still dream of being able to eat gluten-containing foods ;-)

2) The supplement I ordered was not for lactose-intolerance. It was specifically for casein-protein digestion, and casein-intolerant people...I wish I could find it again. As soon as I get it, I'll be sure to tag the info on to this thread...It said it could help with cases of accidental casein ingestion, so maybe I can still use it after going CF...because I ordered about 4 bottles of it, since it sounded so good...but, if I cannot find it again on the Net...maybe it's not so good?...anyway, I'll let you know what it is when I have it in my hands :-)

THANKS, all... Gina

[FaithInScienceToo]

Gina,now that you are not casein free yet,order a test for both Igg and Ige,If  Igg is high you can have casein in moderation(every 4 days),but if  Ige is high ,you must eliminate casein for good.

                            best of luck, and congratulation once more!

<{POST_SNAPBACK}>

Thanks!

I'll ask my GI doc to order them.

Gina

[tarnalberry]

Goggle "leaky gut" and you will find several websites with pretty good evidence that casein is quite damaging to a high percentage of people, even without celiac disease.  Put casein and gluten together and for a number of people with the genetic disposition, there's big touble.  I'm not so sure it's really a good idea to try to hang onto casein consumption.

<{POST_SNAPBACK}>

I haven't seen any good scientific evidence of that, except for the studies done on the rare (and I do mean *rare*) cases of enteropathy caused by casein. Do you have any scientific studies to back up that idea? (I'm curious to read them.)

[cornbread]

Hi, ALL (George, Tiffany, Clair, and cornbread ;-)  )

Casein...another glue...like gluten

<{POST_SNAPBACK}>

Keep a careful eye on how you are reacting to the other two 'glues' too - soy and corn. I was amazed to read Open Original Shared Link because I have developed intolerances to those exact foods, one after the other.

[skbird]

I have total casein guilt. I tested negative for it from EnteroLab and was eating a ton of cheese/yogurt at the time. But every time I start suspecting something in my diet, I start wondering about dairy. I read all the time that adults are naturally lactose-intolerant, but I don't seem to have that problem myself.

I read often on this board about people who can't have lactose or casein but almost never hear from anyone who can consume these. Am I alone or deluding myself? Is it possible to be an adult with digestive problems and no aparant problems with dairy? I am north European in descent, supposedly the only place on the globe with people who can consume dairy as adults. I have gone on dairy-free trials before and seen no improvement in my condition (one month each time).

Maybe I should just spring for the York tests. They seem to have helped many people here.

Stephanie

[FaithInScienceToo]

Thanks, cornbread...interesting site.

Pardon me now, as I cannot help but ask this...

Have you thought of changing your ID to "ricebread"

Hope that got a giggle

Thanks, again.

Smiles,

Gina

[FaithInScienceToo]

I have total casein guilt.

Maybe I should just spring for the York tests. They seem to have helped many people here.

Stephanie

<{POST_SNAPBACK}>

Wow...not sure what to tell you, Stephanie, other than 'knowledge is power'...

I hope you, too, will find all of the answers you need to find your way out of your maze, and into the light of vibrant good health.

Love, Gina

[Nevadan]

I haven't seen any good scientific evidence of that, except for the studies done on the rare (and I do mean *rare*) cases of enteropathy caused by casein.  Do you have any scientific studies to back up that idea?  (I'm curious to read them.)

<{POST_SNAPBACK}>

I'm looking. I've been doing a lot of research over the last several weeks trying to become more educated re celiac, gluten sensitivity, leaky gut, etc. One article I remember was related to casein's relationship to autism in patients who test negative for celiac disease. They put casein into the "food irritant group causing intestinal irritation leading to leaky gut". Now, if I can only find the article.

Most of the "leaky gut" references I found attributed leaky gut to antibiotics, virial infections, taking of NSAID med's, caffeine and alcohol (gut irritants), stress, parasites such as giardia, etc. Few mention celiac - probably for the same reason so few people w/ celiac disease get timely dx's. I'll post if I can find the examples of the references attributing leaky gut directly to casein.

BTW, thanks for requesting specific references. I think your inquiring/skeptical mind is invaluable for a forum such as this. We need to do some reasonable filtering of all the info that's available.

George

[cornbread]

Thanks, cornbread...interesting site.

Pardon me now, as I cannot help but ask this...

Have you thought of changing your ID to "ricebread" 

<{POST_SNAPBACK}>

I probably should. Or maybe just Meatwad!

[FaithInScienceToo]

Funny, funny...you must be a guy ?

Hey...I thought I'd throw some more comic relief into the middle of this casein thread...

Check out the movie section here:

Open Original Shared Link

I bet he doesn't eat gluten and casein...

Enjoy!

[cornbread]

No I'm female, but I still love my Aqua Teens!

That dog is amazing!...

[Nevadan]

Maybe I should just spring for the York tests. They seem to have helped many people here.

Stephanie

<{POST_SNAPBACK}>

I recently got my York test results back (posted partial results at Open Original Shared Link ) and I'm still trying to figure out their value. My highest reactions were to the grain (wheat, gluten, giadin, etc) family and the milk family (casein, whey, etc) which was consistent with my dietary experiments and Enterolab results. I was already gluten-free and CF, so I decided to eliminate the other high reaction items and after about 1.5 wks, I still cannot identify any new cause/effect relationships. I'm going to start re-introducing these items after 2 wks and see if anything shows up then. From what I already knew by diet experiments, gluten and casein were causing me some problems. There's lots of evidence that there are a lot of people who are not genetically equiped to handle these items, me included. Moreover there is numerous evidence of how these can affect those of us people with a susceptible gene configuration (celiac disease, neuro issues, autoimmune disease, nutrient dificiencies, etc ), so eliminating these two families makes lots of sense. Regarding the other things that show up on a York-type test, I'm not so sure.

I'm beginning to think that a higher number of reactions to the York IgG tests are more indicative of a leaky gut. I'm into a crash course on immunology right now and so far I've concluded that the implications of the body's reaction to things is a lot more complicated than just yes/no. e.g. If a partially digested food particle gets into the bloodstream, then its normal for the body to mount a immune response - whether the particular response causes an observable symptom, or damage, is another issue. Clearly if one has numerous IgG responses, then it's likely that the intestine is leaking. Eliminating each item that shows up in a test such as York does may not be the answer, unless one is suffering from a symptom causes by one (or more) of these items, and even then it may be only a partial answer. I think one really needs to figure out what's causing the leaky gut. The most frequently quoted causes are things like antibiotics, food irritants(caffeine, alcohol, etc), NSAID meds, parasites, stress, etc. I'm beginning to think these are the root cause of various IgG reactions, and these are the things that need to be corrected - then the quantity of IgG reactions should decrease. In other words eliminating the items that give a IgG reaction may be more of a "treating the symptoms" instead of addressing the root cause. Of course this is just my $.02 at this point, and I'm new to all of this. I hope this makes sense. Other viewpoints are welcome.

On the other hand knowing how many things give you an IgG reaction is interesting - and maybe useful, but it's no panacea.

George

[Matilda]

..

[FaithInScienceToo]

Interesting posts -

Glad to see many of us continuing our 'studies' and sharing so much.

Matilda -

I love Kefir...used to drink it years ago...

BTW, I just today read the book about the SCD (specific carbohydrate diet), and saw the part about yogurt. But...I am now too afraid to think that I can have any dairy, even though I haven't even given it up yet...too funny...

I just tossed out some lactose-free milk tonight, and am now planning to not buy anymore casein-containing foods...I hope to be out of any casein-containing items/mixes/etc that are currently in my kitchen by 1/1/06...

All I know right now is that I am looking forward to seeing my GI doc tomorrow, to quiz him about casein...and to ask him to order some more casein blood tests.

I'll post later about what he has to say about all of this...if he says much of anything...

Nite all :-)

Later -

Gina

[Nevadan]

Interesting posts -

Glad to see many of us continuing our 'studies' and sharing so much.

All I know right now is that I am looking forward to seeing my GI doc tomorrow, to quiz him about casein...and to ask him to order some more casein blood tests.

I'll post later about what he has to say about all of this...if he says much of anything...

Nite all :-)

Later -

Gina

<{POST_SNAPBACK}>

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