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Crazy Casein Confusion

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Okay- Son recently positive with enterolab- gluten intolerance with IGA and also (two celiac genes). He is about to be one in Jan. currently on Neocate formula. Dtr is 3 and a half and has been on soy milk for a month, (nose stopped running now). We are getting her and spouse tested now for Gluten Sensitivity. Here is my confusion-

1. I have read that casein proteins "mimic" and look like gluten proteins and that is why the body attacks them too, just like gluten. Therefore, the recommended gluten-free/CF diet. BUT......

2. I have also read that your body doesn't process casein proteins, due to the damage in gut. Once it heals, body can then tolerate casein.

Number 1's explanation sounds like you would have to be CF permanently and Number 2 sounds like you would have to be CF only temporary. Which one is right? I am confused.

Also- what about goat's milk. I read it doesn't have casein and can be a good milk sub, but haven't found much info on this forum. (maybe I am not looking in the right place)

So- I have also read soy is not good, but dtr seems to be doing okay. Should I replace with goat's milk? Can I try the goat's milk with my almost 1 year old, when he turns one? Neocate is very expensive.

Also- what is corn gluten? We have been reading labels and seem to find it in some things. Should we avoid this? I also saw our catfood has corn gluten meal in it. Cats have smelly, yucky poops. I just saw another post about catfood. I think I may try and switch.

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Okay- Son recently positive with enterolab- gluten intolerance with IGA and also (two celiac genes). He is about to be one in Jan. currently on Neocate formula. Dtr is 3 and a half and has been on soy milk for a month, (nose stopped running now). We are getting her and spouse tested now for Gluten Sensitivity. Here is my confusion-

1. I have read that casein proteins "mimic" and look like gluten proteins and that is why the body attacks them too, just like gluten. Therefore, the recommended gluten-free/CF diet. BUT......

2. I have also read that your body doesn't process casein proteins, due to the damage in gut. Once it heals, body can then tolerate casein.

Number 1's explanation sounds like you would have to be CF permanently and Number 2 sounds like you would have to be CF only temporary. Which one is right? I am confused.

Also- what about goat's milk. I read it doesn't have casein and can be a good milk sub, but haven't found much info on this forum. (maybe I am not looking in the right place)

So- I have also read soy is not good, but dtr seems to be doing okay. Should I replace with goat's milk? Can I try the goat's milk with my almost 1 year old, when he turns one? Neocate is very expensive.

Also- what is corn gluten? We have been reading labels and seem to find it in some things. Should we avoid this? I also saw our catfood has corn gluten meal in it. Cats have smelly, yucky poops. I just saw another post about catfood. I think I may try and switch.

Our GI dr. made it sound like the dairy intolerance is only temporary. I will never again give my daughter a glass of milk, but i cannot wait for the day when my only concern when reading labels is gluten!!! We have recently discovered that after an occasional glass of soy milk my three year old daughter has also formed a soy intolerance. If i could go back now i would never have given her "whole soy products" If only we had soy back just as an ingredient! Everything I've read about corn gluten says it is safe. Dont worry about it. I know its hard to see gluten and not freak out. I turned all red in the grocery store last week and my husband asked what was wrong with me, and all i could say was that the cracker isle makes me nervous. All those boxes with the word WHEAT on them as large as they could possible write it. It totally freaks me out. lol.

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Lactose intolerance in celiacs may be only temporary, as lactase - the enzyme that digests the milk sugar, lactose - is produced at the tips of the villi in the intestines, which are often damaged in recently diagnosed celiacs.

Casein intolerance is different. I've seen very conflicting things on whether or not casein, one of the milk proteins, is suffienciently structurally similar to the gluten proteins that celiacs react to for it to start its own reaction. It certainly doesn't look like that is the case, from everything that I've read. But that doesn't mean that you can't have a casein intolerance independently, and have difficulty with the milk protein.

All mammals - from cows, to goats, to sheep, to whales, to humans - have casein in their milk. It's one of the defining characteristics. But there are different subtypes of casein, and different species of animals produce different ratios of subtypes in their milk. So, if you are intolerant primarily to only one subtype of casein, you may find that you can handle small to moderate amounts of a different mammals milk. But there's no guarantee, and it's a "go slowly, and try at your own risk" sort of thing.

As for corn gluten, that's another issue of technicalities. Technically, in the scientific/agricultural world, gluten merely refers to a grain protein. Doesn't much matter what grain - wheat, barley, rye, rice, corn, etc. For celiacs, we only care about a few specific glutens - gliadin (wheat gluten), secalin (barley gluten), horedin (rye gluten), and for some, avenin (oat gluten). The others are still *technically* plant protein glutens, but celiacs don't need to be worried about them at all. They are structurally very dissimilar to gliadin, so much so that they cannot start the chemical reaction that is the autoimmune disease of celiac.

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Thank you for the replies, that really clears up some of the confusion I had. It sounds like dairy can be reintroduced at some point, although I will probably stay away from whole milk by the glass. Maybe dairy products like cheese and yogurt will be okay? Both children were tested for IgE milk allergy and both were negative. I read an actual casein intolerance outside of gluten issues is rare. I am wondering if anyone has any children who are gluten-free but are able to do some dairy. I guess once we find out about dtr's gluten issues, (almost positive it is there) we will give her 6 months to "heal" her gut, then maybe re-introduce some cheese and yogurt. I am kind of talking out loud, and just running these thoughts past everyone to make sure I am on the right track. Thank you for all your support!

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Lactose intolerance in celiacs may be only temporary, as lactase - the enzyme that digests the milk sugar, lactose - is produced at the tips of the villi in the intestines, which are often damaged in recently diagnosed celiacs.

Casein intolerance is different. I've seen very conflicting things on whether or not casein, one of the milk proteins, is suffienciently structurally similar to the gluten proteins that celiacs react to for it to start its own reaction. It certainly doesn't look like that is the case, from everything that I've read. But that doesn't mean that you can't have a casein intolerance independently, and have difficulty with the milk protein.

All mammals - from cows, to goats, to sheep, to whales, to humans - have casein in their milk. It's one of the defining characteristics. But there are different subtypes of casein, and different species of animals produce different ratios of subtypes in their milk. So, if you are intolerant primarily to only one subtype of casein, you may find that you can handle small to moderate amounts of a different mammals milk. But there's no guarantee, and it's a "go slowly, and try at your own risk" sort of thing.

As for corn gluten, that's another issue of technicalities. Technically, in the scientific/agricultural world, gluten merely refers to a grain protein. Doesn't much matter what grain - wheat, barley, rye, rice, corn, etc. For celiacs, we only care about a few specific glutens - gliadin (wheat gluten), secalin (barley gluten), horedin (rye gluten), and for some, avenin (oat gluten). The others are still *technically* plant protein glutens, but celiacs don't need to be worried about them at all. They are structurally very dissimilar to gliadin, so much so that they cannot start the chemical reaction that is the autoimmune disease of celiac.

Tiffany, your post was awesome!!! So informative! Thank you!!

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Well, in my personal experience, I have been gluten free for two years and still can NOT have dairy. I can't tolerate goat milk either. I can have an ocassional sheep milk yogurt, but if I have more than one in a week, I start to feel the effects. My enterolab report showed an intolerance to both gluten and casein.

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Thanks for your input. My son showed no intolerance issues with casein when tested through enterolab. So, maybe he will be okay with goat's milk next year? We are having dtr tested through enterolab for gluten, casein, and soy to see what is going on there. It is just so hard with a 3 y.o, and a 1 y.o. to figure this all out. Especially, when your one-year old is in a state of transition with foods, textures, formula to milk, etc. It is so helpful to listen to other peoples experiences. So sorry to see your list of problems. Thank you for sharing your experiences.

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Thanks for your input. My son showed no intolerance issues with casein when tested through enterolab. So, maybe he will be okay with goat's milk next year? We are having dtr tested through enterolab for gluten, casein, and soy to see what is going on there. It is just so hard with a 3 y.o, and a 1 y.o. to figure this all out. Especially, when your one-year old is in a state of transition with foods, textures, formula to milk, etc. It is so helpful to listen to other peoples experiences. So sorry to see your list of problems. Thank you for sharing your experiences.

I am so sorry for your situation too. It's hard enough for those of us who can communicate how we feel, I can't imagine how hard it must be to try to help a young child or baby! I agree that it sounds promising that someday your son will be able to have a bit of goat's milk!

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Eh... I think the figures on the commonality of food intolerances are wrong. I say that because I think doctors and researchers are relying on markers they already know, rather than accepting there may be markers they don't know and listening to patient responses. I don't think you could give me a battery of tests and empirically determine, without talking to me, that I'm casein intolerant. But if you load me up with dairy for a week, I get more constipated than usual, get headaches, get grouchy, and don't feel as well. They can say it's not "intolerance", but I'd say that I don't tolerate it well. :P

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My kids have been on the gluten-free diet for a year. They have had no problems with milk products after being gluten-free for 2 months.

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I would not give my kid soy milk. I actually gave mine soy formula and I have read so many things since that time about how soy effects the thyroid and also something about how it has estrogen effects on little ones, esp. girls. Whether it's true or not I would not take the chance.

As a menopausal female, I have read many times to take soy for it's estrogen properties, so in my mind it is not good for children, since high estrogen has been associated with cancer.

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    Oh yes, it could, although to be honest I never got myself so wet with sweat that it would have been a serious situation.  However, I can remember one time when I got caught in a cloudburst while going to my car in a large parking lot, though, and got soaked to the skin, and of course had to wear those soaking-wet clothes while I drove the 45 minutes it took me to get home --- I will NEVER forgot the misery and agony of that drive!  I could just barely keep the car under control, in fact.
    Thanks for your response, Squirmingitch, but I have to almost laugh, as at this point I am not really stressing over these questions at all --- just curious.  I have always been an insatiable question-asker, so please don't take my frequent questions as a sign of my obsessing over celiac disease or DH.  Yeah, admittedly I was rather stressed out for a couple of days two weeks  ago or so, but I am significantly settled down now, even while negotiating the nutritional maze of trying to manage two
Water?! That's… unreasonably inconvenient. Did it happen with sweat?
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