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

Recommended Posts

CarlaB Enthusiast

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
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

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

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
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

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

flagbabyds Collaborator

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
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

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
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
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

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

Nancym Enthusiast

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
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.

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

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.