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

Casein

CarlaB

By CarlaB
in Related Issues & Disorders

Recommended Posts

CarlaB Enthusiast
CarlaB
Posted

I went gluten-free last December and felt a lot better. Almost three months later I got tested by Enterolab and had high numbers for both gluten and casein intolerance. Since I was feeling so good, I did not eliminate the casein. After 5 months gluten-free I'm feeling bad again much of the time and have linked it to milk consumption. I find it strange that I felt good for so long and am only now starting to feel the effects of the casein.

I was wondering what needs to be avoided to go casein-free. I don't know if it's in all milk products or not.

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
I was wondering what needs to be avoided to go casein-free. I don't know if it's in all milk products or not.

Yes, its in all milk products, cheese, yogurt, etc. Even the stuff thats labeled non-dairy like Cool Whip contains casein.

Here are a couple links.

Open Original Shared Link

Open Original Shared Link

AndreaB Contributor
AndreaB
Posted

Carla,

You might want to try just Cheddar Cheese. With the aging process it goes through it does something to the cheese. Don't remember if it's the lactose or the casein though.

Just looked that up...it's the lactose that's easier to handle.

That makes things really difficult. We went of dairy and went on to soy. Since soy is as bad as gluten we went off of it. Now we found out that both my hubby and I are intolerant to it anyway. I am allergic to dairy but not intolerant so have added it back in. Mostly butter and some cheese for me. Just bought milk for the kids to try.

CarlaB Enthusiast
CarlaB
Posted
  • Author

Thank you for the replies.

Rachel, did Enterolab find a casein intolerance when they did your tests? It seems so strange to me that I was feeling so much better and now feel so bad ... the brain fog and fatigue are the worst, but the digestive problems are there, too. My casein was 30 on the Enterolab test, with <10 being normal. I finally noticed that it was after I had a cup of coffee with cream, or a latte, or ice cream that I would feel bad again. Does this make sense? Sorry if I don't the brain fog is really bad.

AndreaB Contributor
AndreaB
Posted
Thank you for the replies.

Rachel, did Enterolab find a casein intolerance when they did your tests? It seems so strange to me that I was feeling so much better and now feel so bad ... the brain fog and fatigue are the worst, but the digestive problems are there, too. My casein was 30 on the Enterolab test, with <10 being normal. I finally noticed that it was after I had a cup of coffee with cream, or a latte, or ice cream that I would feel bad again. Does this make sense? Sorry if I don't the brain fog is really bad.

Carla,

Sounds like you need to eliminate all dairy. :(

CarlaB Enthusiast
CarlaB
Posted
  • Author

Yea, today is my first day off dairy. How long will it take to feel better?

flagbabyds Collaborator
flagbabyds
Posted

it took me a couple days to feel better, but now i am bak on it, and i feel just fine!

hope it is only temporary (i can use lactaid without any problems) so they think it might have just been lactose not casein.

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted
  • Author
it took me a couple days to feel better, but now i am bak on it, and i feel just fine!

hope it is only temporary (i can use lactaid without any problems) so they think it might have just been lactose not casein.

I'm glad you seem to be able to tolerate milk again ... especially since you can't have gluten, corn or soy!

flagbabyds Collaborator
flagbabyds
Posted

i've very glad that i can have it again, i only had to stay off it for 3 months and then tried stuff w/ lactaid, adn it didn't make me sick, so now i am happily eating cheese again (and ice cream!)

Mango04 Enthusiast
Mango04
Posted
Yea, today is my first day off dairy. How long will it take to feel better?

I'd give it at least a month. I say that because I wouldn't want you to give up on it if you don't feel better right away. The effects of casein sometimes have a way of lingering around for quite a while after you eliminate it.

Rachel--24 Collaborator
Rachel--24
Posted
Thank you for the replies.

Rachel, did Enterolab find a casein intolerance when they did your tests? It seems so strange to me that I was feeling so much better and now feel so bad ... the brain fog and fatigue are the worst, but the digestive problems are there, too. My casein was 30 on the Enterolab test, with <10 being normal. I finally noticed that it was after I had a cup of coffee with cream, or a latte, or ice cream that I would feel bad again. Does this make sense? Sorry if I don't the brain fog is really bad.

My Enterolab was negative for casein (9). I had already been off dairy 4 months before testing so dont know if it would have been positive had I been consuming it. I react to dairy so I'm off of it regardless.

eKatherine Apprentice
eKatherine
Posted

It took me about a week after giving up dairy before I was able to fit into pretty shoes.

Nancym Enthusiast
Nancym
Posted

I've been casein free for about 6 months. People get confused over casein and lactose, two totally different animals. Lactose is the sugar in milk and some processes, like culturing for yogurt and some cheese, the lactose is reduced. There's also an enzyme you can take or put in it that'll help you digest it. Some celiacs, the ones with intestinal damage especially, lose the ability to digest the lactose. But that can come back eventually.

Casein on the other hand is one of the proteins in milk, the other is whey. Casein isn't likely to be something you can ever digest, if you currently have problems. It is like gluten, very sticky stuff, if you've ever handled pure casein protein (I used to make protein drinks out of it... ugh!). I've heard that goat milk has a different sort of casein from cows milk. I'm currently experimenting with goat milk yogurt to see if I can tolerate it. I guess most mammals have variations to casein in their breast milk.

My main symptom to casein intolerance is bloating in the belly, gas, and I think both constipation and diarrhea.

CarlaB Enthusiast
CarlaB
Posted
  • Author
My main symptom to casein intolerance is bloating in the belly, gas, and I think both constipation and diarrhea.

Yea, I've had the constipation, occassional diarrhea. My belly is bloated and I had expected that to go down when I got off gluten and it didn't. It's not bad because I'm pretty thin, but I notice it. It's the brain fog that gets to me.

This is my second day off it and I'm having the same symptoms as when I got off wheat (not gluten, I was off wheat first by a couple years). I feel like I have the flu -- extreme fatigue, d, and brain fog. I've only really been able to rest because I can't accomplish anything. I'm hoping this eases a bit by tomorrow. I've got to drive back to Indiana for my daughter's freshman orientation at IU.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      8

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      Thanks this is helpful!
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    3. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    4. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    5. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,915
    • Most Online (within 30 mins)
      7,748
    DRIZZE
    Newest Member
    DRIZZE
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.