Casein Question

[feedmykids]

Hey, I am new to this forum!

My DD was diagonsed with year when she kept loosing weight and I asked for some testing to be done. We took her off of gluten and she started gaining weight and behaving sooo much better! But, she still had some tummy pains. A month ago we finally took her off of all dairy and she did better. Thursday we took her to the allergist and had her tested for some foods and spices (she has other food allergies, so she has an appt. every year) When we checked for milk, she had no reaction whatsoever to the milk protien (they even did it twice) but she did have a large reaction to the Casein. He said that he thinks she is just lactose intolerant. However, Casein is not Lactose. I think it is more related to her celiac because others have said that they have problems with either lactose or casein. Has anyone else had an allergy reaction to just casein? or have had problems with milk too? He said that she should be able to have small amounts of milk or lactose free dairy foods. ANy suggestions?

[RiceGuy]

I did find I had to stop eating dairy, as have many others. Apparently, as the villi of the small intestine are damaged, one of the first things to go is the ability to digest lactose. This ability (thus being able to eat foods with lactose) can return once enough healing has taken place, though I've read it doesn't always happen. Casein however, is the primary milk protein, and issues with this are another matter. I haven't read anything to indicate that the tolerance of it returns with healing, but I wouldn't be surprised if some experience that. If it is an allergy issue separate from Celiac, then I would have my doubts as to it becoming acceptable to the body at any point.

Perhaps someone else will have more specific answers for you.

Welcome to the board!

[fedora]

I am confused. Casein is the milk protein. ????? I agree with Riceguy. If she is having an "allergic " reaction to casein, then that may never go away. Lots of people are lactose intolerant for life too, not just because of celiac. But celiac can cause lactose intolerance. Your daughter reacted to casein, so that is not lactose. Not sure what your allergist meant by that. I tested for casein intolerance through enterolab. I cut in out a lot, but when ate normal quantities, it was obviously bad for me. I would love to eat cheese one day, but probably won't ever.

[Ridgewalker]

Welcome to the forum!

This is totally bizarre. Like you and others have said, casein IS milk protein. Lactose is milk sugar.

What the allergist said makes no sense whatsoever.

If she showed an allergic reaction to casein, then I wouldn't let her have any dairy products.

I don't know about you, but if it were me, I'd confront the allergist about the crazy things he said. I've not had those tests for my kids, though I've been thinking about it lately. Was this an actual allergist that said these things? A technician? Nurse?

A lot of Celiacs do have trouble with dairy, but for some of them, it's temporary. The thing is, that's an intolerance-- which is different from an allergy.

If casein showed up on an allergy test, wouldn't she be in danger of having a continually worse reaction if she continues ingesting it? This "little bit won't hurt" business would make me very nervous.

Was this a scratch test? To my knowledge, a scratch test for lactose intolerance doesn't exist. Does there?

I am utterly confused, my post may be worthless. But I would certainly follow up on this, and demand some clarification from your daughter's doctors.

[Mom23boys]

When we checked for milk, she had no reaction whatsoever to the milk protien (they even did it twice) but she did have a large reaction to the Casein. He said that he thinks she is just lactose intolerant. However, Casein is not Lactose. I think it is more related to her celiac because others have said that they have problems with either lactose or casein. Has anyone else had an allergy reaction to just casein? or have had problems with milk too? He said that she should be able to have small amounts of milk or lactose free dairy foods. ANy suggestions?

Like the others have said, this isn't making any sense. Casein IS the primary milk protein. There are other milk proteins that a rare few have the severe life threatening reactions to but the primary protein most deal with is casein.

We have allergies to the milk protein casein in this house. You need to avoid ALL forms of milk. Think of casein issues like gluten issues -- they do long term damage to your body even when you are not having outward symptoms. Lactose free foods are not going to help you as they still have casein.

For some reason many drs are taught that there are no milk allergies. Even my first allergist told me only babies have casein allergies and if I was having issues with milk it was lactose intolerance. I told him to test me anyway. He didn't know what to say when I tested positive. I've had to raise a holy stink at a hospital before because I went through my long "milk ALLERGY" speech only to have the nurse write "lactose Intolerance" on my charts after all that. WHY? I don't know.

[Lizz7711]

Sensitivity and allergy are along the same continuum. These terms are often confused by most people, even medical personnel. The body is mounting an immune system reaction to the protein (casein). When people say you are allergic to somethign, that is usually equated with severe life threatening reactions that are obvious to everyone. These reactions are what is tested by an allergist. Sensitivities...which are STILL causing an immune reaction and are in fact a type of allergy, may not be detectable by these tests. Also the reactions may take anywhere from an immediate reaction to much more delayed reaction of a couple days...and the reaction may be physical or behavioral, or it may be totally unseen or felt. An intolerance is different...and gluten/casein sensitivity are NOT intolerance...an intolerance as in lactose intolerance is when the body is lacking a specific enzyme to break down the protein ...but there is no immune reaction or antibodies generated. People often say they have "gluten intolerance", but this is incorrect unless they KNOW they are missing a certain enzyme to break down gliadin, and that they do NOT have any antibodies being activated in response to the gluten protein.

For myself, I tested postivie for casein sensitivity through enterolab. I had previously tested negative on a blood test for milk allergy. I am finding that my symptoms if I do get milk products are becoming more and more similar to an outright allergic reaction (my throat gets tight, I feel tired etc), and this is as a 42 year old...so a person can have sensitiviites that get so sensitive they resemble what we usually call "allergy".

good luck!

Liz

[feedmykids]

My two DD's both have severe life threatening allergies to both peanuts and eggs. (so we do carry 4 epi-pens everywhere) WE are quite famliar to allergies! She was skin tested for Cows milk protien, Lactalbumin, and casein. She had absolutly no reaction to the first two but just reacted to the casein. He said that you won't react to casein without also being allergic to the regular cows milk protien. The only reason they test for both is because you can be allergic to cows milk and not casein. ( Casien is the primary protien but not the only protien.) It didn't make sense to me either that he would say that she is lactose intolerant (he is the real allergist), but since he doesn't know too much about celiac, I wondered if it possible to have a real allergy to just casein and he hasn't seen it yet or maybe if it could be linked to her celiac? Does anyone else just have an allergy to just casein, or have an intolerance to casein that is related to celiac? WE are pretty new to celiac disease as in the last year so there is still a lot to learn. Thankyou for your responses and welcomes!

[Lizz7711]

Out of my own curiosity I looked up cow's milk on wikipedia and below is what they said. So i'm wondering if the allergist is just confused because they're not used to seeing casein sensitivity. I'm not sure what protein the "typical milk allergy" is related to, could be one of the whey proteins I guess.

I don't think it's necessarily related to celiac, although as I said earlier, for some people it probably is, due to the similarity of the amino acid sequences of the proteins. And it isn't an intolerance, but a sensitivity/under the radar allergy. I think the issue is that the whole idea of milk SENSITIVITY is quite new...there really is not much online about casein sensitivity at all. Again, I think it's because the medical world has always put milk allergy in a box of life/death or bad rashes etc, and only in babies. They're not used to seeing adults all of a sudden have sensitivities to milk proteins. I think as time goes on and they learn more, it will be more recognized. The underlying issue in my opinion is that cow's milk is not a natural food for humans to eat in any form and so way more people than we know have a level of sensitivity to it, as they do to gluten as well sicne the wheat stucture was changed hundreds of years ago. I am studying dietetics and in talking to people who have joint pain/arthritis issues, the first thing I tell them is to try stopping all dairy for 3 weeks...it's unbeleivable how many people have positive results and discover that all along they have had an autoimmune reaction to milk, when regular docs would just give them pain killers etc.

Anyway, here's the wikipedia info...take care!

Open Original Shared Link

The largest structures in the fluid portion of the milk are casein protein micelles: aggregates of several thousand protein molecules, bonded with the help of nanometer-scale particles of calcium phosphate. Each micelle is roughly spherical and about a tenth of a micrometer across. There are four different types of casein proteins, and collectively they make up around 80 percent of the protein in milk, by weight.

Milk contains dozens of other types of proteins besides the caseins. They are more water-soluble than the caseins and do not form larger structures. Because these proteins remain suspended in the whey left behind when the caseins coagulate into curds, they are collectively known as whey proteins. Whey proteins make up around twenty percent of the protein in milk, by weight. Lactoglobulin is the most common whey protein by a large margin (McGee 20

[feedmykids]

Lizz7711 Thakyou soo much for the info! It think it would be safe to say that she is allergic to milk now. I'm not sure what my allerist was thinking or what the pritein is they test that just says "whole cows milk" But if there is that must casein in milk, I will keep it all out of her diet. It may just be a systemic reaction because it makes her tummy hurt. and gives her D. My older DD has systemic reations to soy and will get quite sick, not every allergy reaction will be anaphlyactic, but can become so. Thanks!

[Lizz7711]

No problem. I just learned in my maternal nutrition class that human milk is the opposite of cow's milk in that the majority of our milk is whey, with small amounts of casein. So it makes sense that our digestive systems would not handle it cow's milk very well--it simply wasn't designed for humans to consume!

take care

Liz

Lizz7711 Thakyou soo much for the info! It think it would be safe to say that she is allergic to milk now. I'm not sure what my allerist was thinking or what the pritein is they test that just says "whole cows milk" But if there is that must casein in milk, I will keep it all out of her diet. It may just be a systemic reaction because it makes her tummy hurt. and gives her D. My older DD has systemic reations to soy and will get quite sick, not every allergy reaction will be anaphlyactic, but can become so. Thanks!