Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Don't Really Understand Casein Intolerance


RollingAlong

Recommended Posts

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Nancy N Rosen
    Newest Member
    Nancy N Rosen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.