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 Intolerance


mela14

Recommended Posts

mela14 Enthusiast

I'm starting to think that my dairy intolerance could be casein.

I don't have anything dairy except for a little milk in my coffee. lately I haven't been having coffee because my gut has been in an uproar! I've been having camomille instead which has been ok but obviously not as satisfying as that first cup of morning java. This morning I thought it was safe to have coffee so I had a cup with milk. I took lactaid with it but about an hour after I had it I started to get bloated and feel sick. My gut feels inflamed and sore. shouldn't the lactaid have helped? maybe I am sensitive to the casein? I am waiting for the results from my York food allergy testing to see what shows up. if it's dairy does anyone know what I can use in my coffee to replace the milk? The rice dream bothers me as it has barley enzymes. maybe I could put a little of the rice dream frozen desert. it is gluten-free unlike the rice dream beverage. hmmmmmmmmmm

thanks,


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

I know that I am very sensitive to milk. Not even lactaid helps me. You could see if goats milk works for you. I cook with it and feel a lot better with that rather than cow's milk.

I asked my doctor about casein and she said it isn't like Celiacs where we get damage. That if I didn't mind the symptoms when eating it then it was okay, unlike with gluten.

burdee Enthusiast

Hi Kristina:

Maybe your doc confused casein intolerance with milk allergy. According to my Enterolab test results, I did have antibodies to casein just like I have antibodies to gluten. Both Enterolab, Ron Hogan in "Dangerous Grains" and all the parents of autistic spectrum children on the www.gfcfdiet.com website may disagree that casein intolerance doesn't cause any damage. :o If lactaid doesn't prevent your symptoms and you can't tolerate goat's milk which ALSO has casein, you probably have casein INTOLERANCE. Maybe this is a good place to say that you can order the 'Vance's dairy substitute' which can be used for cooking through www.ener-g.com. Actually I picked it up at my local Ener-G Foods outlet in Seattle, but I'm sure they will ship. ;)

BURDEE

MySuicidalTurtle Enthusiast

Oh yes, you are right. If someone can't tolerate goats milk (which is easier to digest) then it really could be casein.

I asked my doctor specifically about casein and she sat and explained the differences but was very clear that it wouldn't cause damage. Sigh, I don't know! I will ask her about it again and for information on it when I see her.

That Vance's Dairy Subsitute sounds like a good alternative.

Maggie1956 Rookie

I can't handle having more than two mugs of coffee (instant) a day, or I got a severe stomach ache.

Have you thought it may have something to do with the coffee rather than the milk?

Just a thought.... <_<

tom Contributor

I think casein can cause more than just quick-and-over symptoms, but certainly nothing of the magnitude of the damage done by gluten.

I've been gluten-free a yr and Gluten-free Casein-free 2.5 months. I use Silk brand soymilk in everything - coffee, cereal, and just drinking. I like to euphemistically (sp?) call it "year-round eggnog".

Be careful of many alleged 'non-dairy' creamers and other products. Coffeemate itself and all imitators have "sodium-caseinate (a milk derivative)". How they can label themselves non-dairy while their OWN label ALSO says "milk derivative is beyond me.

muffin2 Newbie

What is casein and what are the effects of it??


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



Celiac.com Sponsor (A8-M):



lmtrenholm Newbie

Hi,

Casein is a protein in milk and is a relatively common allergen. Tom is right, if you're trying to avoid casein you can't trust labels that claim to be non-dairy. They often have casein or some form of it like caseinate. Cool Whip is a perfect example and actually helped me to pinpoint what it was that was causing my reations.

As well as experiencing the usual digestive problems associated with milk ingestion (diarrhea, gas, bloating - probably mainly due to lactose intolerance), my specific response to casein is to experience swelling and tenderness, primarily in the sacroiliac region (lower back/upper buttocks area). I also have experienced severe swelling of the bottom of my feet (heel area) and aching in my hips, knuckles, and up the front of my thighs. I couldn't sleep and would get up every day stiff and aching. The sacroiliac/back pain was unbearable at times.

I was originally diagnosed as having fibromyalgia but after suffering for about 5 years, I determined that casein was the root cause of my problems. I had given up milk because of lactose intolerance but was still consuming several products containing casein or caseinate. It takes about a week to 10 days of absolutely no casein for me to be free of all symtoms.

My doctor seemed to think this was crazy at the time, but a few years later I read about a woman in the UK who showed the same reaction in a documented, double blind test. Also, my husband has found that since he gave up all milk too, a lot of his aches and pains, especially backaches, have vanished.

Giving up milk, and then later the grains, has made me (and my 17 year old celiac/dermatitis herpetiformus/casein allergic daughter) ridiculously healthy. All my health problems, and there were a lot, have resolved. My back is as strong as anything and I never have backaches or joint pains anymore.

I'm wondering whether you have to be "allergic" to benefit from giving up milk, or if maybe the Paleo/Neanderthin diet guys are right and we just aren't meant to eat grains and milk. There are probably a lot of people who've been told they have IBS, Crohn's, arthritis, etc. who would be amazed at how much better they would feel on a gluten and milk free diet.

  • 10 years later...
SMS123 Newbie

Hi,

Casein is a protein in milk and is a relatively common allergen. Tom is right, if you're trying to avoid casein you can't trust labels that claim to be non-dairy. They often have casein or some form of it like caseinate. Cool Whip is a perfect example and actually helped me to pinpoint what it was that was causing my reations.

As well as experiencing the usual digestive problems associated with milk ingestion (diarrhea, gas, bloating - probably mainly due to lactose intolerance), my specific response to casein is to experience swelling and tenderness, primarily in the sacroiliac region (lower back/upper buttocks area). I also have experienced severe swelling of the bottom of my feet (heel area) and aching in my hips, knuckles, and up the front of my thighs. I couldn't sleep and would get up every day stiff and aching. The sacroiliac/back pain was unbearable at times.

I was originally diagnosed as having fibromyalgia but after suffering for about 5 years, I determined that casein was the root cause of my problems. I had given up milk because of lactose intolerance but was still consuming several products containing casein or caseinate. It takes about a week to 10 days of absolutely no casein for me to be free of all symtoms.

My doctor seemed to think this was crazy at the time, but a few years later I read about a woman in the UK who showed the same reaction in a documented, double blind test. Also, my husband has found that since he gave up all milk too, a lot of his aches and pains, especially backaches, have vanished.

Giving up milk, and then later the grains, has made me (and my 17 year old celiac/dermatitis herpetiformus/casein allergic daughter) ridiculously healthy. All my health problems, and there were a lot, have resolved. My back is as strong as anything and I never have backaches or joint pains anymore.

I'm wondering whether you have to be "allergic" to benefit from giving up milk, or if maybe the Paleo/Neanderthin diet guys are right and we just aren't meant to eat grains and milk. There are probably a lot of people who've been told they have IBS, Crohn's, arthritis, etc. who would be amazed at how much better they would feel on a gluten and milk free diet.

Hi,

I know I am replying to 10 a year old post.

I am searching a lot on the condition I have and found your post. I am getting swelling on lower back\upper buttocks area. I got a fistula in that area and had surgery to fix it. After surgery, I got swelling again the same area.

 

Can you please tell me your experience with that swelling how it was cured.

 

This will help me lot.

 

Thanks in advance!

kareng Grand Master

Hi,

I know I am replying to 10 a year old post.

I am searching a lot on the condition I have and found your post. I am getting swelling on lower back\upper buttocks area. I got a fistula in that area and had surgery to fix it. After surgery, I got swelling again the same area.

 

Can you please tell me your experience with that swelling how it was cured.

 

This will help me lot.

 

Thanks in advance!

 

 

This poster hasn't been on the forum in 9 years.  I doubt you will get an answer.  I think you did have some replies on your own topic?

SMS123 Newbie

This poster hasn't been on the forum in 9 years.  I doubt you will get an answer.  I think you did have some replies on your own topic?

Hi Kareng,

This is the only post that is talking about swelling on lower back. I thought of giving a try. I have some replies to my original post but nothing specific about my condition.

 

Thanks!

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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

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

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    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

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.