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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    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

    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
×
×
  • 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.