Casein And Enterolab Question

[holiday16]

My daughter tested positive for gluten as well as the casein. The gluten I understand, but with casein is it a permanent reaction like with gluten or can you add it back in at some time in the future? Also, do you have to be as careful as with gluten? I know even the smallest amount makes us react, but I don't know if casein is the same way. Any help would be greatly appreciated as I'm really trying to understand the casein aspect.

She has never done well with dairy even as a baby so it fits that she's having trouble with casein. I gave her goats milk when she was little and she had trouble even with that and she had terrible reflux. I'm wondering with her history if she has always just been incapable of digesting the casein in dairy and she may alway have to be casein free. She also does not like any dairy except cheese and has avoided it to the point of not putting butter on anything. Cheese and ice cream are the only exceptions, but she pretty much doesn't want anything else dairy.

[gffamily]

Holdiay16,

I'm sorry to say that I don't know the answers to your questions, but my daughter and I also came back with other food sensitivites in addition to gluten when we tested through Enterolab. I haven't been able to figure out the nature of the other food sensitivities exactly, since information about allergies to these foods doesn't seem to apply.

As far as casein goes though, my daughter has a terrible behavioral reaction whenever she ingests any amount of casein, so we have to be as careful as we are with gluten.

Personally, I was kind of hoping that after a while on the gluten-free (and soy and casein free) diet, that her belly would heal, and then the other sensitivities would go away. I don't have any real evidence to back this up I'm afraid. I just theorize that if she developed the other sensitivities because of food molecules passing through a "leaky gut", then maybe healing the stomach would eliminate the immune reactions to other foods.

I am very confused about this myself, and would love to get some answers!

[Mayflowers]

I was born with a milk allergy and my Enterolab tests came back positive for caseine.

Look at the bright side...we can still have whey. Enterolab said it's the caseine that causes the problem.

[pedro]

Hi I laso have the same allergies aswell as one of my daughthers. When I was tested I called EnteroLabs and talked to the nurse the allergies are forever. In my case I react to Casein the same way as gluten so therefore I cannot ingest any gluten and casein forever. You can call them and they will tell you exactly everything with regards to the allergy. My understanding is that you can never ingested again. Sorry.

Take care and best regards to you.

[confused]

I react very bad to casein, i always knew i had a problem with lactose and casein before i was ever tested. I could not eat ranch and sour cream, i woud be so sick. But i would still eat it and suffer. Now that i gave it all up, i feel the best i have ever felt unless if iaccidently eat gluten or casein. I know for me it is for life. But i will try after an yr andsee what happens. even tho i know i will have an severe reaction to casein.

It is hard to give up, but the end is so much better.

paula

[Piccolo]

Dear Holiday,

I can not have any dairy at all. I do react. If I get a lot i'm on the pot within 2 hours. If it is a small amount I don't know it for a while. My bathroom habits change and I wonder why. Casein is the protein if one is sensitive to it it is life long avoidance.

After a few of the reactions I've had I'm happy to avoid it.

Susan

[confusedks]

I heard that whey isn't acceptable either? Maybe I'm wrong? Wouldn't casein be found in whey? Now I'm confused.

As far as for life or not, I believe it is for life. There are a lot of great ice cream substitues for ice cream. We bought one called rice divine- Mudd Pie Flavor....OMG it was to DIE FOR!!! It had gluten free brownie bites and chocolate and caramel...it was amazing! It is also gluten free. Just make sure that if you're going to keep her casein free, don't overload her with soy replacement products, because that's what I did and now I can't tolerate soy either!

Good luck!

Kassandra

[EBsMom]

I was born with a milk allergy and my Enterolab tests came back positive for caseine.

Look at the bright side...we can still have whey. Enterolab said it's the caseine that causes the problem.

There's no casein in whey? We've been avoiding it. Hmmm......

Rho

[zarfkitty]

I'm probably the dissenting voice here. I'm off casein currently and I'm being as strict about it as the gluten. But I plan to challenge dairy after a year or two. This article gives me hope that it could possibly turn out in my favor:

study shows 61% of casein-intolerant patients can develop casein tolerance

I have seen research linking casein intolerance to intestinal damage in patients with celiac, so I'm not holding my breath. When I challenge dairy in a couple years, I'll have the enterolab run again to monitor my response.

[Mayflowers]

There's no casein in whey? We've been avoiding it. Hmmm......

Rho

I asked Enterolab because I came up intolerant to everything: gluten, eggs, soy, dairy...

I complained to them that I have nothing left to eat! They said I could eat egg yolks. The protein that I'm intolerant too is in the egg whites.. I can also have whey protein. Caseine is a different protein in dairy than whey. I said, wow, thanks.

I'm not even off dairy, soy and eggs yet. It's heck being off of wheat and gluten. I ate it for 49 years and to find out that I should't eat it after all that time is crazy. From highest numbers to the lowest it's wheat, dairy, soy and eggs just coming in at 10. Dairy stuffs up my nose and soy makes me feel bloated but that's the only reactions I seem to have. With eggs I try to eat mostly yolks.

I'm just sick of people looking at me like I'm an alien when I tell them I can't eat bread, cake or pasta..Grrrrr!

[mftnchn]

I have to agree that these other food intolerances may or may not be life-long. Although Dr. Fine is pretty negative about milk for anybody, that impresses me as not a balanced approach.

I think we need to remember that celiac is not an allergy, it is an auto-immune disease triggered by gluten. We don't know that other foods cause a similar disease process, even though I have read that there is somewhat of a similarity of casein to gluten protein (in composition, not that it causes celiac disease). The only other one I have read about causing villi damage is soy.

We also know that some people are not celiac but have an allergy to wheat. And there are several different types of allergy reactions, only some of which are life-long.

We also know that no matter what the tests we do, the ultimate confirmation is what happens when we eat or don't eat a food.

Given all of these variations, I think it is important that on this board we only suggest people can try and see, but not suggest that people can never eat foods (other than gluten containing foods if they are diagnosed with celiac).

[Piccolo]

For the egg intolerance I have been eating duck eggs. I like and enjoy them. I have no reaction to them and I like the richer taste over chicken eggs. Duck eggs also work well in any recipe. I paid about $6.00 per dozen.

Susan

[Mayflowers]

For the egg intolerance I have been eating duck eggs. I like and enjoy them. I have no reaction to them and I like the richer taste over chicken eggs. Duck eggs also work well in any recipe. I paid about $6.00 per dozen.

Susan

Duck eggs? Sounds good. I thought an egg was an egg is an egg no matter what bird it comes out of.

Did anyone ask Dr. Fine about that?

As I mentioned the Enterolab is not recognized in some states as reliable but when I stopped eating wheat at least 3-4 times in the last few years to see if I had a wheat allergy and I didn't feel any different, so I'd go back to eating it, until I started having acid reflux from it more often, so I came here and asked and found out other celiacs had AR from wheat also so they recommended Enterolab and when it came back positve at 79, I stopped eating it and I went through withdrawals for MONTHS. I still crave it.

After a year off it, I suddenly did notice I'm much more emotionally stable, and I can handle a ton more stress and I'm happier, less depressed, much better mood, my anxiety attacks stopped... Also hardly any arthritis symptoms.. My arhtritis is also caused (more I think) by rice.. If I eat it two days in a row, my knee starts throbbing.. amazing a grass can do that to a human who's supposed to be omniverous.

Sooo, I guess Dr. Fine is right and the surgeons would rather charge people a ton of money to do a biopsy. Makes them more money than a stool specimen huh? Medicine is a business. I work in a medical school, and I see the corruption going on.

[gffamily]

I agree with Mayflowers and Zarfkitty. I understand that the gluten-free diet is for life, (although I am hoping that with the growing numbers of people having this problem, that research will be expanded and some kind of treatment will exist in the future).

But what is the harm (literally) of every so often challenging ourselves with the other food issues?

That being said, this can be so difficult, especially for children, that I have nothing but respect and empathy for anyone trying to figure this out. All we can do is try to be informed, open-minded and make the best choices we can at the time.

One blessing about all these differing ideas about how to cope is that we have each other learn from.

Pam

[Mayflowers]

I'm probably the dissenting voice here. I'm off casein currently and I'm being as strict about it as the gluten. But I plan to challenge dairy after a year or two. This article gives me hope that it could possibly turn out in my favor:

study shows 61% of casein-intolerant patients can develop casein tolerance

I have seen research linking casein intolerance to intestinal damage in patients with celiac, so I'm not holding my breath. When I challenge dairy in a couple years, I'll have the enterolab run again to monitor my response.

Perhaps the caseine intolerance is more an allergy and the wheat intolerance is a inherited genetic disorder?

[gffamily]

Perhaps the caseine intolerance is more an allergy and the wheat intolerance is a inherited genetic disorder?

I've wondered that too, because my daughter reacts very quickly to casein, which I thought was more indicative of an allergy than an "intolerance". But, if I remember correctly, just because you have a sensitivity diagosed through stool testing, doesn't mean that you can't ALSO be allergic that food.

[EBsMom]

Perhaps the caseine intolerance is more an allergy and the wheat intolerance is a inherited genetic disorder?

I had understood that the casein intolerance is a cross sensitivity, provoked by the autoimmune response to gluten (the structure of casein is very similar to the structure of the gluten proteins.) I don't know if it's logical, but I'm hoping that when the autoimmune response is essentially quieted (after strict adherence to a gluten-free diet for a period of time) that the casein problem will subside. The operative word in that sentence is "hope", lol!

Rho

[hathor]

I have nothing definitive to add to the discussion about lifelong versus temporary intolerances for these other things. I wish I knew! I only remember one person on this forum who tested positive for casein intolerance and later was able to add it back, after eliminating it for something like six months. I can't remember who it was ... perhaps she (he?) will join this discussion.

The only study I can add to the mix is one about yeast intolerance. For that, many celiacs who started out with antibodies to yeast lost those after following a gluten-free diet. (It says nothing about avoiding yeast!)

Open Original Shared Link

The abstract notes: "In children this disappearance of ASCA positivity was more pronounced. This can be explained by the well-known fact that gut permeability normalizes much better in children than in adults. Also, the adults had higher levels of ASCAs at diagnosis. This was probably because they had been exposed to gluten for longer and therefore had more long-lasting damage."

(ASCA stands for anti-Saccharomyces cerevisiae antibodies)

The study mentioned in another post deals with children. So it could be that the older you are, the less likely you can get rid of an intolerance. I know I used to be able to deal with casein and egg and now they make me sick (even before Enterolab testing). I do seem to be able to deal with yeast, now though. I simply don't notice any symptoms from having it (I was good for several months -- I suppose I should change the information at the bottom of my post )

I've also noticed that I can now handle small amounts of soy without difficulty. I haven't had the inclination to have a whopping serving of tofu and see what happens.

For those dealing with a need to eliminate casein, you might try goat's milk and see how you tolerate it. A few times recently I've had small amounts and not had a problem. I haven't wanted to have too much and then find I've developed another intolerance! I only tried the goat's milk because my food pickings were so slim on vacation. Probably best not to try this until you think you've done a goodly amount of gut healing.

I wouldn't chance whey unless it is said specifically to be casein-free. The contamination potential would seem to be too big. I looked at one Gluten-free Casein-free site and it lists whey as unacceptable.

The only product derived from cow's milk I feel safe using is ghee. That is supposedly so clarified that it contains no proteins at all.

[mftnchn]

Unfortunately, I think all are possibilities and each person has to figure it out. CarlaB is one who tested sensitive to casein on enterolab and later has been able to eat it. She says she is gluten intolerant but not celiac.

I just tested it after 4 months off milk totally, and have not done well at all. I challenged it with quite a bit of milk in one day.

After a couple more months, I may try just eating a little butter on something. If that works, I'll try a little cheese. If I can get to the point where I can have a little bit every few weeks that would be wonderful.

Some people do tolerate goats milk, but it does have similar proteins.

[CMCM]

This has been somewhat my experience. I'm 58....at birth I had a horrible time with dairy, my parents walked the floors with me due to endless colic, and finally I was able to have goat milk. My entire life I've more or less avoided milk because I always had a terrible time with it. Any time I'd eat anything, but especially ice cream, cream, well, you name it....I'd get very sick, lots of D, cramps, nausea. Fast forward to 18 months ago.....I have the celiac gene (like my mother, who has celiac disease and who has 2 celiac genes). I had gotten very sick, did the testing with Enterolab, and stopped eating gluten. Thru this testing I also was found to be casein sensitive, so I stopped that too....no surprise there. After 6 or 8 months I had a bit of dairy here and there...and HUGE SURPRISE....it didn't seem to bother me in the least. So I don't know how to proceed with this....Dr. Fine/Enterolab of course says not to have casein/dairy, that it can also do damage to the intestines. But after a period of healing and being away from gluten AND dairy, my ability to digest dairy seems to have improved. I don't push the matter....I don't have much dairy, and not every day, and I'm always careful with it, but so far so good!

The biggest surprise in all this was that all the digestive upsets I had my entire life were due to GLUTEN, and not dairy as I'd thought. Or at least, dairy isn't the prime culprit. And perhaps if I ate a ton of dairy I'd have problems again.

I had understood that the casein intolerance is a cross sensitivity, provoked by the autoimmune response to gluten (the structure of casein is very similar to the structure of the gluten proteins.) I don't know if it's logical, but I'm hoping that when the autoimmune response is essentially quieted (after strict adherence to a gluten-free diet for a period of time) that the casein problem will subside. The operative word in that sentence is "hope", lol!

Rho

[holiday16]

This was all very helpful! I think that what we'll do is go casein free and see if we can't try adding it back in at some point. She doesn't seem to notice problems with it, but I think that may change after it's totally out of her diet for a while.

One thing I've noticed and I may be wrong, but there seems to be a tendency that the people with the positive malabsorption test seem to also be the ones that test positive as reacting to both casein and gluten. Of course it's also possible I'm just noticing it more now since my daughters tests came back that way )

I was a bit frustrated that the only rice milk our store that we like to go to carries is Rice Dream. Everything else is soy and I'm trying to avoid overusing that. I did find an alternative for butter and ice cream so we're good to go there. We're still approaching it gradually and that seems to be going well as far as stress. I'm not overwhelmed with suddenly trying to bake everything casein free and she's getting in the habit of remembering to watch for dairy. I went gluten light before going gluten free and that seems to make the transition less stressful. There really is just so much to learn it can be so overwhelming!

[sfm]

My daughter tested positive for gluten as well as the casein. The gluten I understand, but with casein is it a permanent reaction like with gluten or can you add it back in at some time in the future? Also, do you have to be as careful as with gluten? I know even the smallest amount makes us react, but I don't know if casein is the same way. Any help would be greatly appreciated as I'm really trying to understand the casein aspect.

She has never done well with dairy even as a baby so it fits that she's having trouble with casein. I gave her goats milk when she was little and she had trouble even with that and she had terrible reflux. I'm wondering with her history if she has always just been incapable of digesting the casein in dairy and she may alway have to be casein free. She also does not like any dairy except cheese and has avoided it to the point of not putting butter on anything. Cheese and ice cream are the only exceptions, but she pretty much doesn't want anything else dairy.

I know with me, I can eat small amounts of casein occasionally. I probably shouldn't, but the severity of the symptoms is nothing like with gluten. If I have it more than once in awhile, then I start to feel sicker.

When I do have it once in awhile, it is pretty much just a gassy feeling, without pain or diarrhea. But some folks might be different.

However, I don't think it's like people who are temporarily lactose intolerant because of the damaged villi - the casein is a permanent intolerance, like gluten. At least that's how I understood it.

Sheryll