Casein Intolerance...

[Rusla]

It is frustrating if you know you have a dairy sensitivity but don't know whether it is lactose or casein. I believe the literature supports that with celiac patients it is most often casein.  I have a relative who tried taking the lactaid pills and they did not work at all which suggests that she is okay with lactose but not with casein.  It's a tough way to test.  Claire

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I have a book called the UnCheese cookbook. There are recipes for uncheese, things that have no dairy etc that you can make out of different things and it is like cheese.

[tarnalberry]

Found this thread again when I was searching for casein stuff.  For those that have tested positive for casein intolerance, are your symptoms similar to lactose intolerance?  Just wondering if there is a way to figure out what is bothering me with dairy - lactose or casein - based on my symptoms without a blood or stool test. 

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I find that, if it's a lactose problem (and almost anyone will experience lactose intolerance symptoms if they eat too much milk at a time, because it's a dosage thing), I get gas, amongst other things. Casein, however, gives me constipation - instant hemmhroids, pretty much. (Note, here I mean constipation in *hard stools* not necessarily infrequent.)

[Claire]

On the "gluten like reaction" from casein question:

If you check out pubmed, you'll find that it IS possible to have enteropathy (villi destruction) from casein proteins, but it is actually VERY rare.  (As in, handful of reported cases ever, not the <1% of the population sense.)

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and from other reactive foods as well. Also from medications, from serious infections. It is not exclusive to Celiac as is commonly believed. Claire

[bluelotus]

Thanks for your above replies. I will be seeing a gastroenterologist today and will be asking him to test me for delayed allergies, including casein. I seemed to handle the cream cheese well from yesterday, so keeping my fingers crossed that it is just lactose....I miss cheese

[Felidae]

I have been having gastro problems for the past month too. I will try an elimination diet. But, what can I replace cheese with to really fill me up? I have a very high metabolism and I need to eat often.

[bluelotus]

I hear you on the "no cheese" thing.....not much out there that is as hardy. Nuts maybe, if you aren't allergic......

I went to a gastro today and he did not believe that the Elisa tests were accurate and didn't want to do one (also was a bit put off that I asked about it since he claimed my regular doc could have ordered the test). He said the only test that will accurately settle the lactose vs. casein issue is a lactose test they do in the office. Guess you have to drink a bottle of "lactose" (what that means specifically, I don't know), and then they monitor your blood for 5 hours. (No, we patients don't have lives, and can waste 5 + hrs in the dr office feeling like crap....ugh!!).

What's the opinion on this here? Have others had dr's say the ELISA test is crap? Have others been tested for lactose vs. casein with the "lactose test"?

Thanks.

[Rusla]

I hear you on the "no cheese" thing.....not much out there that is as hardy.  Nuts maybe, if you aren't allergic......

I went to a gastro today and he did not believe that the Elisa tests were accurate and didn't want to do one (also was a bit put off that I asked about it since he claimed my regular doc could have ordered the test).  He said the only test that will accurately settle the lactose vs. casein issue is a lactose test they do in the office.  Guess you have to drink a bottle of "lactose" (what that means specifically, I don't know), and then they monitor your blood for 5 hours.  (No, we patients don't have lives, and can waste 5 + hrs in the dr office feeling like crap....ugh!!).

What's the opinion on this here?  Have others had dr's say the ELISA test is crap?  Have others been tested for lactose vs. casein with the "lactose test"?

Thanks.

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I know for a glucose test you have to drink glucose but never heard of drinking the lactose. So what does he say he does for a casein test? I really don't know a lot of mine showed up in allergy testing.

Ducks go quack and I know some doctors are quacks.

[bluelotus]

I told him that dairy bothers me and that I seem fine when I've taken lactase pills, though I wasn't sure if casein may be bothering me too. The above test is a way to test for lactose intolerance. I guess if you don't get sick from the lactose, its the casein that gets you...... Not really sure that the thing is worth my time. He was an older doctor too, so maybe this is some sort of 'old-school' way of testing??

[Guest BellyTimber]

To test for lactose intolerance takes about a month.

Spend 5 days without any dairy.

Have lots of butter but no other dairy for a few days.

Then 5 days without any dairy

Then repeat process with cream, live yoghurt, soft cheese, hard cheese, neat milk, in that order, always with a few dairy-free days in between.

Note - live yoghurt should have a high level of live organisms in and no added ingredients. The organisms turn virtually all the lactose to something else. The other foods are in order of lactose content from smallest to largest.

If your symptoms are absent or very low for the first three and significant for the last three kinds then you have lactose intolerance.

If you have to go low-fat or for any other serious reason avoid butter, start the regime at the cream stage.

You can adjust your diet by avoiding the products that trigger it off the worst and using the ones that trigger it off less, or not at all, lightly for the duration of the problem or however long you like.

I got the results predicted above and went largely dairy free (though not worrying about butter) for about a year and now seem to tolerate dairy far better, as well as I can tell! I never took lactase pills so can't comment on their usefulness.

Quinoa drink was and is my favourite milk substitute (a bit expensive though)!

Don't avoid any class of foods altogether without very serious reasons.

[Guest BERNESES]

Wait- I'm REALLY confused. You mean cream has less lactose than hard cheese? Maybe I misread but I always thought it was the other way around (my doctor told me that most people with lactose intolerance can eat cheeses like parmesan). Thanks, Beverly

[bluelotus]

I appreciate everyone's help, but considering I am feeling pretty ill today (and have been super careful this past week with gluten since discovering some sources), I think I have a casein intolerance. I was feeling lucky and had cream cheese again today (as well as a lactase pill), and although I don't have brain fog, I feel like I've been glutened. Yuck. Guess that's it for me as far as testing myself with dairy.

I was thinking too - if you get ill from the lactose, regardless of whether casein is or is not present in the drink, it says nothing about casein intolerance. If its in the drink and you get sick, who's to say what made you sick. If its not in the drink, then you would not know for sure (unless you did not get ill at all from lactose, but I doubt that's a possibility considering how damaged my system is).

[tarnalberry]

Actually, there's a lactose-intolerance breath test that doesn't require much time at all.

[aikiducky]

I was diagnosed lactose-intolerant with a lactose drink and blood test. I had to fast for I think it was 12 hours before. What they did was take a blood sample before the drink, then give me the drink (with an enormous amount of lactose in it!), wait 20 min. take another sample, wait another 20. min. and a last sample.

The idea is that if you are able to digest the lactose, your blood sugar will go up after the drink. If you digest all of it, obviously your blood sugar raises more than if you just digest some of it, so this test will give some indication of how severely lactose intolerant you are. And if your blood sugar only raises a tiny little bit or not at all, you're not able to digest lactose, aka you're lactose intolerant. It's logical really, and it's not a quack test.

My blood sugar went DOWN, btw. I wasn't terribly sick afterwards, just woozy from low blood sugar and all the needles.

As far as I know, simple lactose intolerance shouldn't give much more than digestive symptoms... brain fog, irritability and that type of symptoms would make me suspect casein intolerance. Which is a different kind of intolerance, the similarity in name is confusing. As far as I know, casein intolerance doesn't necessarily mean that one doesn't digest casein, it means that your body has an immune reaction to the casein. In the case of lactose intolerance, bacteria in the intestines feed on the undigested lactose and form gas and stuff, and the lactose holds on to water - hence gas and D. But lactose doesn't really cause an immune reaction AFAIK, so taking an lactase enzyme should be enough to help if it's just lactose intolerance.

About the enzymes (Kerulac, Lactaid etc.) - if you totally lack these enzymes in your body, like I do, the dosage on the box/bottle isn't NEARLY enough. I used to take three- four times that for it to work.

Hard cheese is virtually lactose free. Cream is not. Where on earth do people get these ideas?

To test for casein, though... I've decided that I'm probably casein intolerant as well. The way I did it, was not eating ANY dairy for a while, then trying some hard, matured cheese and getting sick. Since the cheese is lactose free, I conclude that my reaction was to casein instead. I seem to be ok with moderate amounts of goat cheese though.

Pauliina

fairly new to gluten-free, old hand at lactose free

[julie5914]

I did a breath test for lactose intolerance in April which was negative. Also, my gluten numbers were still so high that it seemed as though I had been intentially eating gluten to my doctor. I think that my body is reacting to casein as though it is gluten because the proteins are so similar. Thus, antibodies to gluten are being produced, which causes the blood numbers to stay up and symptoms to continue with damage. I cut out casein early last week and already feel much better. I am keeping it out until my next appt. after Christmas to make sure it makes my numbers go down.

[Claire]

I did a breath test for lactose intolerance in April which was negative. Also, my gluten numbers were still so high that it seemed as though I had been intentially eating gluten to my doctor. I think that my body is reacting to casein as though it is gluten because the proteins are so similar. Thus, antibodies to gluten are being produced, which causes the blood numbers to stay up and symptoms to continue with damage. I cut out casein early last week and already feel much better. I am keeping it out until my next appt. after Christmas to make sure it makes my numbers go down.

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If you are right about what you say here you have gone a long way in supporting what I have been writing here for awhile. That a person who is gluten-free (for whatever reason) needs to weigh the casein factor very carefully. The gluten/casein similarily is a real issue - read up on the mimicry factor - and gluten-free people may need to be CF even if they do not have demonstrable casein intolerance. Certainly if gluten-free does not relieve the distress (after a fair trial) then this contributing factor should be looked at. Other factors as well, of course.

Thanks for a perceptive and enlightening post. Claire

[kelliac]

Sorry if this was already answered but could someone tell me exactly what casein intolerance is. What is casein, what is it in, if it is same as dairy. Was diagnosed with casein allergy, but a dietician said that is just an ingredient in cow's milk only. Should I be avoiding more products?

[Claire]

Sorry if this was already answered but could someone tell me exactly what casein intolerance is.  What is casein, what is it in, if it is same as dairy.  Was diagnosed with casein allergy, but a dietician said that is just an ingredient in cow's milk only. Should I be avoiding more products?

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Sorry if I sound negative but dieticians cannot always be trusted. Their education does not really prepare them to deal with anything out of the ordinary -basic healthy diet etc.

Casein is the protein component in milk. Lactose is an enzyme. The molecular structure of the milk protein casein is almost identical to the structure of the wheat protein gluten. There is a concept of 'mimicry' - this is where the immune system attacks things that are very similiar in nature - it will attach body cells that are 'like' the target. The target may be gluten but the immune system attacks body cells that resemble gluten. It is thought that the immune system could see casein and think - ah. gluten. This could then extrapolate to an attack on body cells that resemble gluten.

Clear as mud?

Do some reading on the subject of 'mimicry',

As for avoiding more products - the decision of course is yours but I would think that casein needs to go. Not to disuade you, but I personally think going CF is harder than gluten-free.

Hope this helps Claire

[kelliac]

As for avoiding more products - the decision of course is yours but I would think that casein needs to go.  Not to disuade you, but I personally think going CF is harder than gluten-free.

Hope this helps Claire

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Yes. Thank you, Claire, it is much clearer now. And, I agree, CF may be harder at least now that I'm gluten-free. When you give up something, you tend to substitute other things and when you find out your substitutes are just as bad, ouch.

[Guest BERNESES]

I'm so glad we have this thread! I am going in Tuesday to see an allergist to be tested for food and other allergies. We suspect my apartment is making me sicker 9i think there's a mold problem as i CLEARLY feel better when I'm out of it and sick as a dog when I'm in it). My question is, can an allergist test for an intolerance as well as an allergy? I suspect I have a milk allergy (the chronic ear infection link for me) but I'm also wondering about a lactose/casein intolerance. Sometimes, but not always, I get really noxious gas from eating something like parmesan and other times, I'm fine. No clue but I'm glad this thread exists! Beverly

[bluelotus]

I was diagnosed lactose-intolerant with a lactose drink and blood test. I had to fast for I think it was 12 hours before. What they did was take a blood sample before the drink, then give me the drink (with an enormous amount of lactose in it!), wait 20 min. take another sample, wait another 20. min. and a last sample.

The idea is that if you are able to digest the lactose, your blood sugar will go up after the drink. If you digest all of it, obviously your blood sugar raises more than if you just digest some of it, so this test will give some indication of how severely lactose intolerant you are. And if your blood sugar only raises a tiny little bit or not at all, you're not able to digest lactose, aka you're lactose intolerant. It's logical really, and it's not a quack test.

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I wasn't trying to imply that it was a quack test, rather that the doc himself was off, sorry if I gave that impression. For one, he claimed the ELISA blood tests are crap and don't work, whereas several people here have had good luck with them (then again, I know very little about the tests, but when people here have used them and a celiac disease book suggests it......makes me wonder). I have a hard time seeing the value in a test that not only takes 5 hours out of my day according to him, but according to you, I would have to fast as well, and, I will most certainly feel like crap afterwards. Not fun.

I am 90% certain that it is both lactose and casein bothering me. 1) Hard cheddar gave me bloating and gas a few weeks ago (very low to no lactose) and 2) the last time I took a lactase supplement, I still felt like crap, though that wasn't always the case.....leading me to believe it is both. Based on what others have said, casein is probably something to avoid anyway, so I will have to get used to a life without cheese BTW - Lactaid has gluten, so no one should take that! I can send you all their email response to me if anyone wants to see for themselves. And I agree with you above, one lactase pill doesn't work for me either....when I say pill, I mean 2-3 (I use a brand with greater amount lactase than Lactaid)

Another thing about this doctor (sorry to go back and forth) - he tried to tell me that one week of eating gluten would give me a pos. biopsy result!! What?!? Here is a man that doesn't trust ELISA, but would trust doing a biopsy after only one week of gluten (I have been gluten-free for a year, with frequent mistakes for the past 4 months - though I have since found the source). Based on reading, biopsy's are pretty unreliable (i.e. a negative test doesn't mean you don't have celiac disease - true for almost all scientific tests though b/c you can't prove a negative) and it can take 3-4months to 5 years of eating gluten to sustain enough damage to get a positive test. Stupid doctor.

[Felidae]

Lactaid has gluten! No wonder I got sick. I was trying to figure out if I was casein or lactose intolerant and I was craving cheese like crazy so I took a Lactaid pill. Oops.

[Felidae]

I just went on the Lactaid website and sure enough the kind that I took is not gluten-free. Only the Fast Act caplets and the Original Strength caplets are gluten-free.

[bluelotus]

I did not know that any were gluten free - the rep implied that they all had gluten (I asked her to email a list of gluten-free products and only Lactaid milk made the cut - no Lactaid pills....hmmm.)

[laurelfla]

i talked to a Lactaid rep and she could not find the info on Lactaid Ultra but said Fast Act was gluten-free. can y'all post the name of the offending Lactaid? i've been taking both Ultra and Fasta Act lately and haven't noticed anything in the way of symptoms.

and back to the casein/lactose question:

i was feeling pretty crappy there for a while a few weeks ago when i had been gluten-free for a couple of months. then i discovered Lactaid, and the fact that the Kraft cheeses i like contain 0g of lactose. with that combination, i have improved 100%. no more D, bloating, gas, etc.

the other thing is that i have pretty much stopped trying to eat all kinds of fruits and veggies everyday, and i feel so much better from that too. my support group leader last month said when we're newly diagnosed we have to treat our stomachs like babies' stomachs, they can't handle large quantities of some things (really fibrous veggies, fruits/ dairy). so it is not a regimen that i'll keep up for a long time because obviously it's not the healthiest but for now it is working wonders. and i do still eat some of those things, but not like i was before.

so do you guys think that since i feel fine when i take/drink Lactaid, my problem would be more lactose intolerance than a casein thing? and would i be doing any damage to my system by still continuing to eat lactose even though i feel fine?

thanks! sorry this was so long.

[Felidae]

I took Lactaid Ultra. I mentioned the two kinds that were gluten-free. But maybe they are not, according to the rep. I would think that if you are fine when you take Lactaid (but maybe switch to a gluten-free brand) then it is just lactose intolerance. Lactose shouldn't damage your system when you are taking the enzyme to digest it.