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

By mela14
in Related Issues & Disorders

Recommended Posts

mela14 Enthusiast
mela14
Posted

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
MySuicidalTurtle
Posted

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
burdee
Posted

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
MySuicidalTurtle
Posted

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
Maggie1956
Posted

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
tom
Posted

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
muffin2
Posted

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
lmtrenholm
Posted

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
SMS123
Posted

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
kareng
Posted

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
SMS123
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.