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

Gfcf


mushimushi2004

Recommended Posts

mushimushi2004 Rookie

Hello, I am new and very glad to find this forum. I was diagnosed gluten-free about 2 years ago. Now I am wondering if I am also casein intolerant. Does anyone one know what amount of casein is in each dairy product. For instance is there more casein in milk than cream. Could someone post a web site with this info. I have searched but can't find anything. Those of you that are casein sensitive, are there some casein products that you can eat over others? I may be just sensitive, co I am trying to do an elimination diet and try to eat dairy one product at a time to see if there is one product over another that is worse for me. I do seem to be able to eat some white cheese but not kefir that I have made or yoghurt.

Del


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Look at the protein content of the dairy foods - the higher the protein content, the more casein in it. (Since casein is the main protein in dairy.) I'm Gluten-free Casein-free and seem to pretty much not tolerate much casein at all.

burdee Enthusiast

Del:

An easy way to determine if you are casein (milk protein) or lactose (milk sugar) intolerant is to use 'lactaid' chewable tablets before consuming any dairy or use "Lactose free milks". If those lactaid supplements prevent your 'dairy symptoms, then you just have lactose intolerance. If not, you problably have casein intolerance. My casein intolerance was diagnosed by Enterolabs with their tests which indicated casein antibodies. So, just like gluten to which my body creates antibodies, I cannot tolerate ANY casein. Most people I know with casein intolerance cannot tolerate ANY. Perhaps you should consider getting a test for casein intolerance to determine for sure whether you have that.

BURDEE

Guest gfinnebraska

Del ~ I recently came to the same conclusion as you. I knew about the gluten, but not the casein. I have been dairy free for a little over 3 weeks. WELL, I made peas the other night with dinner and didn't even think about the butter I put on them. Ugh! I ate them and THEN thought about it. WELL, sure enough ~ major reaction!!! At least I am sure now that it is casein also, not just gluten. Like I say ~ knowledge is a wonderful thing!! It is worth trying to eventually feel great in this world. :) I now use a soy "butter" ~ Smart something. My mind is blank. It really tastes great ~ I have also sub. ice cream with Edy's Sorbet ~ wonderful product!! I still crave cheese on my hamburger patty, but that is life! I use Silk soy milk on my cereal ~ not bad at all!! The choc. Silk is wonderful!! I have been feeling great since leaving the dairy out. Let us know how it goes. :rolleyes:

Isabellamac Newbie

Hello

I found a good site that answers just the questions you wonder about, Del.

Look at

Open Original Shared Link

If that long address doesn't work, look on Google, putting Steve Carper in the search box. The first possibility that comes up is the one you want.

The site is very informative about problems with dairy. For instance I learned that butter has hardly any lactose in it!

Worth a look...

Isabella

burdee Enthusiast

Isabella:

Lactose. which is milk SUGAR. is just one component of dairy. Many celiacs whose intestines react by forming antibodies to gluten also react by forming antibodies to CASEIN or milk protein. Dairy also includes whey and rennet components. Some celiacs can tolerate casein but not lactose. Others can't tolerate any components of cow's milk. Goat's milk also contains casein which causes casein intolerance.

BURDEE

  • 2 weeks later...
mushimushi2004 Rookie

I got lost and couldn't find my way back!LOL! Thanks to all of you that came to my aid with some answers for me. That was a big reminder for me to remember that the casein was the protein and to just find out how much protein was in the various dairy products! DUH! Which I did and discovered there was .4 grams per 100 grams of protein in butter. I was also diagnosed by Enterlabs with Gluten Intolerance. I don't have the report in front of me but I don't think the report said that I WAS casein intolerant but that "most gluten intolerant people are also casein intolerant and it would be best if I did eliminate all dairy". Well I have continued to have some dairy. I really can't see that it bothers me that much. Some I can do and others I cannot. I have been having raw colby cheese on an also daily basis with seemingly no problems. Of all the dairy products that seem to bother me the most its kefir and yoghurt (I don't even think about milk). I would think that cultured products would be okay. What would the symptoms be for casein intolerant? What about being just casein sensitive to some amounts of casein? I was doing fine before Thanksgiving but I must have eaten something that set me off because I am just now starting to be better. I stopped eating just about everything! I went on the 5 major lectins elimination diet! I hope you guys can make heads or tails out of this rambleling. I will see about doing the test Burdee suggested to see if it is casein or lactose that bothers me.

Del


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



Celiac.com Sponsor (A8-M):



  • 4 weeks later...
donnalois Newbie

Some Autistic websites now claim that these children respond better to a gluten-free and cassein free diet. You may find some recipies that are both gluten-free and cassein free if you looked on autistic support groupsites. My daughter is also gluten-free and C/F but not autistic. We use a soy based powdered baby formula for any recipe calling for milk powder and it is an easy way to have a milk substitute in the house for making waffles etc. from scratch.

Donna

Kitchener

  • 2 weeks later...
sfortney Newbie

My four year old son is on a gluten and casein free diet. We use Tofutti brand cream cheese, sour cream, and cheeses (Canadian Company). Silk brand soymilk is both casein and gluten free and is actually pretty good, just takes a little getting used to. We use Earth Balance's Soy Garden buttery spread and really like it. Also, I use Isomil baby formula (soy) in place of milk powder and almond meal in place of buttermilk powder. Some people use Soymage brand cheeses, but it is very difficult to find them in our area and my son likes Tofutti better anyway. It can be extremely overwhelming, but after a while making the substitutions becomes a lot easier. Hope this info was at least a little helpful. Post if I can be of any more help.

mushimushi2004 Rookie

Well, I have had something major happen to my gut. As yet don't know what is causing it. I have had a bunch of tests, including a full food panel. I am allergic to so many foods that I am just finding out. Never used to be allergic to these foods! Soy is on the list, dairy, beef, chicken. The only thing that has helped me is going on the SCDiet. Symptoms are pain when I eat just about anything! Right now I am only able to eat a very few foods and I eat them 1 at a time, not a meal. I have a GI appointment on Wed.....

Del

sfortney Newbie

Wow! Good Luck! I hope everything turns out okay for you. Getting used to eating a new and different variety of foods is hard enough, but then when it becomes very restricting... bless your heart.

If you are able to tolerate potatoes DariFree makes a really good milk substitute.

You'll be in our prayers.

Stephanie

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. - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    2. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    5. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,911
    • Most Online (within 30 mins)
      7,748

    Cici123
    Newest Member
    Cici123
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.