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I Don't Really Understand Casein Intolerance


RollingAlong

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RollingAlong Explorer

I don't understand what I am reading about casein.

I read that 50% of all celiacs have trouble with it (Pubmed) but I couldn't tell if this was long term or not. It doesn't seem to me that anywhere near 50% avoid it.

I read that it looks a lot like gluten so the body confuses it with gluten (same with soy).

I've read that if you're digesting things well, presumably you could eat it safely (Hyperlipid).

So how will you know when you're all healed up? (Especially if your biopsy was negative, what's

healing exactly?)

If you challenge casein or soy, would you necessarily get the same reaction as to gluten?


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Mother of Jibril Enthusiast

I think the confusion comes from casein vs. lactose.

Celiacs tend to have problems with dairy because they stop producing lactase (the enzyme that digests lactose, the main sugar in milk). Foods that are low in lactose... like hard cheese and yogurt... are fine. This can be a short-term intolerance. Once your intestines heal, you might be fine. Other people find that they can only tolerate small amounts or have to stay off dairy completely.

Casein intolerance is a different story. All dairy products that come from cows have casein (the protein in milk), so the only products that might be safe are from different animals... sheep, goats, etc... In the past, people thought you could outgrow a casein intolerance or "milk allergy," but now it looks like your body just maladapts. The initial symptoms go away (for my son, those include terrible eczema, bloody diarrhea, and projectile vomiting), but something else pops up later... like an autoimmune disorder.

If you want to challenge yourself with one of these (casein, lactose, soy, corn, etc...) try cutting it out of your diet for a few weeks and then eat a lot of it for a few days. If you don't get a reaction then you're safe to eat that food/protein/sugar.

  • 2 months later...
Lovey25 Rookie
I don't understand what I am reading about casein.

I read that 50% of all celiacs have trouble with it (Pubmed) but I couldn't tell if this was long term or not. It doesn't seem to me that anywhere near 50% avoid it.

I read that it looks a lot like gluten so the body confuses it with gluten (same with soy).

I've read that if you're digesting things well, presumably you could eat it safely (Hyperlipid).

So how will you know when you're all healed up? (Especially if your biopsy was negative, what's

healing exactly?)

If you challenge casein or soy, would you necessarily get the same reaction as to gluten?

What I have read about Casein is that it has a similar consistency to glue. So, for people who already have problems with inflammatory intestinal issues, a glue-like substance only makes things worse.

Fiddle-Faddle Community Regular
I think the confusion comes from casein vs. lactose.

Celiacs tend to have problems with dairy because they stop producing lactase (the enzyme that digests lactose, the main sugar in milk). Foods that are low in lactose... like hard cheese and yogurt... are fine. This can be a short-term intolerance. Once your intestines heal, you might be fine. Other people find that they can only tolerate small amounts or have to stay off dairy completely.

Casein intolerance is a different story. All dairy products that come from cows have casein (the protein in milk), so the only products that might be safe are from different animals... sheep, goats, etc... In the past, people thought you could outgrow a casein intolerance or "milk allergy," but now it looks like your body just maladapts. The initial symptoms go away (for my son, those include terrible eczema, bloody diarrhea, and projectile vomiting), but something else pops up later... like an autoimmune disorder.

If you want to challenge yourself with one of these (casein, lactose, soy, corn, etc...) try cutting it out of your diet for a few weeks and then eat a lot of it for a few days. If you don't get a reaction then you're safe to eat that food/protein/sugar.

How do we know the difference if our kids have gotten over a short-term intolerance to lactose or if they have maladapted to casein? My son was never tested, he initially had diarrhea with milk, so I immediately stopped all dairy, and introduced it over a year later, but very, very slowly. He hasn't had problems since, but I don't feel like waiting around to see if an autoimmune disorder pops up! (He is off gluten.)

Is my only option Enterolab testing, or is there anything else?

Mother of Jibril Enthusiast
How do we know the difference if our kids have gotten over a short-term intolerance to lactose or if they have maladapted to casein? My son was never tested, he initially had diarrhea with milk, so I immediately stopped all dairy, and introduced it over a year later, but very, very slowly. He hasn't had problems since, but I don't feel like waiting around to see if an autoimmune disorder pops up! (He is off gluten.)

Is my only option Enterolab testing, or is there anything else?

Wow... good question!! You might try ELISA testing for IgG sensitivity.

Honestly, I think there's just SO much research that needs to be done on food allergies and intolerances, especially concerning the role they play in autoimmune disorders. I found this article that was published just last year:

Open Original Shared Link

I came across it when I was searching for information about anaphylaxis. I'm still working on decoding it ;) The most interesting thing I found out is that anaphylaxis, IgG allergies, and celiac disease (plus some other autoimmune disorders like lupus) are all considered "hypersensitivity disorders." They just impact the body in different ways.

Gentleheart Enthusiast
How do we know the difference if our kids have gotten over a short-term intolerance to lactose or if they have maladapted to casein? My son was never tested, he initially had diarrhea with milk, so I immediately stopped all dairy, and introduced it over a year later, but very, very slowly. He hasn't had problems since, but I don't feel like waiting around to see if an autoimmune disorder pops up! (He is off gluten.)

Is my only option Enterolab testing, or is there anything else?

The saliva test by Diagnos-Tech in Washington State can test for the major protein intolerances of gliadin, casein, soy and albumin (egg whites). It is as controversial as the stool test, but among the growing number of doctors who do strongly believe it is valid, it is also considered to be 90+% accurate. Diagnos-Tech requires a medical professional to order it, but it's a home kit that you send in yourself. I was told that major protein intolerances like these tend to be lifelong. We know gliadin is.

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      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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