Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Do You Get Symptoms After Eating Casein?


SUZ42

Recommended Posts

SUZ42 Explorer

I am wondering if eating casein can cause symptoms like gluten can? I have been gluten free and really try not to eat casein. The only time I do is with butter (on a potato), coffee cream and milk chocolate, and these are not daily. But the other day I got so sick with bloating, pain, gas. I reread my journal and the only thing I did differently the day before was eat cauliflour with about 3 tbs of cheese sauce. Could it be the casein in the cheese sauce? thanks everyone!


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

It could be. Recently I tried some rice cheese (1 slice on a sandwich). The cheese was lactose free. I had an intestinal reaction later that night and for 2 days after. It was different than my normal gluten reaction, in that I did not have any anxiety or moodiness.

I've been dairy free for longer than I've been gluten-free. I don't know what I was thinking--but it was enough to tell me my body does not like casein!

hathor Contributor

Yes. Next question :lol:

Since you show an Enterolab result of casein intolerance, you shouldn't be so surprised that you had a reaction.

I was having only tiny bits of casein for some time since I was mostly eating vegan. OK, I would eat out & the veggies or the pasta sauce would have a little butter, cream, or cheese I didn't expect. I wouldn't send it back. I occasionally would eat birthday cake or goodies at Thanksgiving, etc. Rarely did I react (although I felt sick for days from eating a big slab of cheesecake -- what was I thinking? Of course, no one had officially diagnosed me with anything). But the occasional bits of casein were enough for a substantial antibody response.

I'm sure Enterolab told you that you should avoid every bit of casein as much as you should avoid gluten. Not to be a nag or anything ... it is your choice. Just don't be surprised if you react sometimes.

  • 2 weeks later...
jcc Rookie

My daughter with gluten sensitivity reacts to casein with gastrointestinal symptoms (stomach ache, gas, bloating, diarrhea). Apparently this is not uncommon. Thankfully, while she also had neurological symptoms with gluten, she doesn't seem to get neurological symptoms with casein (although some people do... I've heard of both seizures and peripheral neuropathy related to cow's milk).

Here is a March 2007 study about casein sensitivity...suggesting that about 50% of those tested also had casein sensitivity.

Mucosal reactivity to cow's milk protein in coeliac disease.

Patients with coeliac disease (celiac disease) on a gluten-free diet may still have gastrointestinal symptoms. On clinical grounds cow's milk (CM) protein sensitivity may be suspected. Here, using rectal protein challenge, we investigated the local inflammatory reaction to gluten and CM protein in adult patients with celiac disease in remission. Rectal challenges with wheat gluten and dried CM powder were performed in 20 patients with celiac disease and 15 healthy controls. Fifteen hours after challenge the mucosal reaction was recorded by the mucosal patch technique with measurements of local release of neutrophil and eosinophil granule constituents; myeloperoxidase (MPO) and eosinophil cationic protein (ECP). We measured the mucosal production of nitric oxide (NO) simultaneously. Six of the patients who reacted to CM were also challenged with alpha-lactalbumin and casein. In 18 of 20 patients gluten challenge induced neutrophil activation defined as increased MPO release and increased NO synthesis. Ten of these 20 patients showed a similarly strong inflammatory reaction to CM challenge. Six of the CM sensitive patients were challenged with specific CM proteins: casein and alpha-lactalbumin. Casein, in contrast to alpha-lactalbumin, induced an inflammatory response similar to that produced by CM. A mucosal inflammatory response similar to that elicited by gluten was produced by CM protein in about 50% of the patients with coeliac disease. Casein, in particular, seems to be involved in this reaction.

PMID: 17302893

Open Original Shared Link

This is similiar to past findings.. another often referenced study...

Antibodies to dietary antigens in coeliac disease.

Antibodies to gliadin (AGA) were found in 77 (94%) of 82 sera from patients with active coeliac disease (untreated and after gluten challenge). Although IgG AGA had a higher nosological sensitivity than IgA AGA (88% versus 67%), their nosological specificity was lower than that of IgA antibodies (87% versus 100%). The sensitivity of antibodies to casein, beta-lactoglobulin, and ovalbumin in active coeliac disease varied from 36% to 48% without significant difference between IgG and IgA antibodies. IgG and IgA antibodies to milk and egg proteins showed a specificity similar to that of AGA, although some IgA antibodies other than AGA were found in disease controls (Crohn's disease, ulcerative colitis, post-enteritis syndrome).

PMID: 3775259

Open Original Shared Link

SOY can do it too~

"Food-induced enteropathy: Cow's milk proteins and soy proteins can cause an uncommon syndrome of chronic diarrhea, weight loss, and failure to thrive, similar to that appearing in celiac disease. Vomiting is present in up to two thirds of patients. Small bowel biopsy shows an enteropathy of variable degrees with villous hypotrophy. Total mucosal atrophy, histologically indistinguishable from celiac disease, is a frequent finding."

eMedicine: Protein Intolerance

Open Original Shared Link

Cara

hathor Contributor

I wonder how they found people willing to participate in any study involving "rectal protein challenge." :blink:

Sorry, that makes me squirm just to think about it :o

jcc Rookie
I wonder how they found people willing to participate in any study involving "rectal protein challenge." :blink:

Sorry, that makes me squirm just to think about it :o

lol.... some people will do anything for $$. Maybe it was one of those studies where you get paid for participating ~

MySuicidalTurtle Enthusiast

Yes, I have reactions to casein like I do to gluten.


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



Celiac.com Sponsor (A8-M):



georgie Enthusiast

I get symptoms after cows milk casein but not after goats milk casein or sheeps milk casein. I am taking things carefully and not overdoing the goats milk cheese - even though I love it - but it does seem to be better for me.

  • 2 years later...
mhb Apprentice

I've been off gluten for 1.5 years and casein for 1 year, except of course the occasional screwup. I'd been hoping to reintroduce casein after a year, so I started with a goat milk yogurt (goat and yogurt forms supposed to be easier to digest). Well that was the end of it. Immediate reactions were slightly gurgling stomach, bronchial congestion and gas. Two mornings later loose stools. I don't know if it's lactose or one of the proteins, but before going dairy free I didn't have all these symptoms to it, just bloating, so I suspect it's a protein.

RollingAlong Explorer

Most of the recipes I've seen for cheese sauce contain flour. Are you talking a standard bechamel, or white sauce, flavored with cheese? But you made a gluten free version? Do tell....I'm not planning on using the cheese, just the white sauce.

Crimson Rookie

I had the same thought that RollingAlong had. Most cheese sauces can contain some kind of wheat or wheat derivative.

Before eating gluten again for three weeks last month, I could eat yogurt without issue. Now when I eat yogurt, I get immediate headache, dizziness and brain fog that lasts for a number of hours.

So, I'd say you can react in many different ways.

Usually when I eat rice now, it's gluten like, stomach gurgling, bloating, severe D... but without all the extra pain.

  • 3 years later...
brookevale Newbie

I realized after elimination that high levels of casein or sodium caseinate gave me splitting headaches. I stopped dairy altogether. I recently tried eating dairy again and although I don't get headaches, I have been having horrible neuropathy, muscle and joint pain. I am a very complicated case--have sphincter of oddi dysfunction (SOD), which I had surgery for. Ever since about two months after the surgery I've been getting this pain for the first time in my life. I tested positive for the celiac genetic marker, but negative for the antibodies and sprue. So, GI doctor says I don't have celiac. I went gluten free for nearly a year while I was very ill with SOD. It never made a difference for how I felt because I always felt like crap. I started eating gluten again back in August. I still have negative celiac blood tests. Not sure what to do/think. But, I do know beyond a shadow of a doubt that I have casein intolerance.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis
      16

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

    2. - BelleDeJour replied to BelleDeJour's topic in Dermatitis Herpetiformis
      16

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

    3. - knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis
      16

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

    4. - coeliacmamma replied to coeliacmamma's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      New diagnosis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,121
    • Most Online (within 30 mins)
      10,442

    foxymama564
    Newest Member
    foxymama564
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @BelleDeJour, The genetics are fascinating.  I'm very curious about what your genetic test would show.  My dad was a smoker, too.  Tobacco acts as an antihistamine.  Histamine levels increase in the immune response to gluten.  My mother had headaches, gastro symptoms, and thyroid problems.  She developed nodules and had to have her thyroid removed.  This is common in thirty percent of patients with Hashimoto's thyroiditis.  I've got two Celiac genes, so they both must have had Celiac.    The thyroid and the pancreas use a great deal of thiamine, as do the brain and heart.  Thiamine deficiency can be localized in one organ.  Thiamine deficiency localized in the digestive system, Gastrointestinal Beriberi, has the same symptoms as Celiac Disease, abdominal pain, acid reflux, bloating, sibo, gastroparesis, diarrhea and constipation.  Thiamine deficiency localized in the pancreas reduces insulin production and results in diabetes.  In the thyroid, Hashimoto's is related to thiamine deficiency.  Headaches and migraines can be a result of thiamine deficiency.  My mother at 67 developed Glioblastoma Multiforme, brain cancer.  My dad had a Triple A (Abdominal Aortic Aneurysm) which is also linked to thiamine deficiency.  It was caught in time, but he later died of pneumonia after chemo for lung cancer at 81.  Thiamine deficiency is commonly found in all types of cancer.   I'm so glad you're going to look into Benfotiamine.  Do take all the rest of the B vitamins as well as Benfotiamine.  They all work together, but Thiamine also does a whole bunch of wonderful stuff by itself, so taking more than just the recommended daily allowance is beneficial.  Our metabolic need for thiamine increases when we're sick, emotionally stressed, or exercise regularly.  Thiamine in all its forms is safe and nontoxic.  There's no upper limit.  I've been taking high dose thiamine for over a decade.  Do get checked for other nutritional deficiencies like Vitamins D, A, and C, all very important in skin health, as well as magnesium (works with thiamine) and iron. I love your comment about "digesting the wealth of information" and it being gluten free!   There's no wealth like knowledge, no poverty like ignorance.  So thankful I can share the wealth!   Do keep us posted on your progress!
    • BelleDeJour
      @knitty kitty thank you so much for that wealth of information which I shall take time to digest (because it's gluten free 😀). I will make notes in preparation of my Derm appointment next week. The genetic link is interesting. My parents both died 20 years ago, in their mid-60's. Both were always very active, healthy diet etc. but my father was a smoker (always smoked outside, even when we were children). My mother died from pancreatic cancer at 64 and always had problematic gastro symptoms from childhood - and regular migraines, used to complain of bloating. I had a 'lightbulb' moment a few weeks ago and I do really feel she may have been Celiac.  The iodine used in dyes is interesting, it could have been that in the sweets - they were RED! 🫢 I had read about B vitamins being good for dermatitis herpetiformis before and am taking them (I think it's just a B vitamin combination I have currently). I will look into getting Benfotiamine.    
    • knitty kitty
      @BelleDeJour, Have you thought about keeping a food mood poo'd journal?  Recording what and when you eat can help pinpoint possible culprits for your outbreaks.  A red dye additive used in some foods and drinks contains iodine.   Have you considered getting a genetic test to look for Celiac genes?  Having Celiac genes and a positive response to a gluten free diet can be used as part of a diagnosis of Celiac Disease without undergoing a gluten challenge.   Do get checked for Diabetes.  Activated Neutrophils are involved in making dermatitis herpetiformis blisters and they are also found in Diabetes.  Apparently, high glucose levels contribute to activating Neutrophils.  People with dermatitis herpetiformis have a 22% increased risk of developing Diabetes.  One study found a majority of people with dermatitis herpetiformis have four or more autoimmune diseases (Addison's, dermatitis herpetiformis, Diabetes, and thyroiditis being the most common). I have dermatitis herpetiformis and I developed Type Two Diabetes.  Ninety-eight percent of diabetics are deficient in Thiamine.  I changed my diet to the AutoImmune Protocol Diet and took Benfotiamine, a form of thiamine, that has been shown to increase insulin sensitivity.  I no longer have any symptoms of diabetes. Because half of Celiacs carry the MTHFR mutation, I supplement with methylated B vitamins.  Many of the B vitamins, including thiamine in the form Benfotiamine, improve the neuropathy that goes along with dermatitis herpetiformis (that itchiness without a blemish).   I take additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide).  Benfotiamine promotes intestinal health.  Thiamine TTFD improves Gluten Ataxia, brain fog, and fatigue.   I use J. Crow's  Lugol's iodine because I have had hypothyroidism.  It's rapidly absorbed through the skin, so it doesn't trigger the immune system in the digestive system.  Thiamine deficiency is also found in Hashimoto's thyroiditis.   And... Thiamine has been shown to calm down Neutrophils.  Calmed down Neutrophils don't make dermatitis herpetiformis blisters.  My skin has improved so much!   Hope this helps!  
    • coeliacmamma
      Thankyou all for your replies this has helped massively 
    • Russ H
      There are some really good recipes here: Gluten Free Alchemist The woman that runs it is UK based, and has a daughter with coeliac disease. I think she might be a food scientist as she is extremely knowledgeable about the properties of different starches and flours etc. Coeliac UK have a lot of UK relevant information regarding coeliac disease, and also have a recipes section: Coeliac UK Find Me Gluten Free is a good resource to find gluten free places to eat out. You can use the website or download their app. Paying for the premium services gives more advanced searches: https://www.findmeglutenfree.com/  
×
×
  • Create New...