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

How Many Of You Are Also Casein Intolerant?


julie5914

Recommended Posts

julie5914 Contributor

I know that casein intolerance is linked to celiac, but I don't know to what extent. I have definitely felt better gluten free, but sometimes I react to yogurt (don't seem to have trouble with milk). Most of all, I don't want to be doing all this gluten-free work for nothing and have damage from casein. I know that I am not lactose interolernt from a breath test.

So, do you guys also have casein intolerance, and how did you know for sure? I don't get blood levels checked again until Oct.


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



Celiac.com Sponsor (A8-M):



frenchiemama Collaborator

I'm beginning to think that I have a problem with dairy and also egg yolks. I plan to have the york food scan done, but I can't afford it right now.

jenvan Collaborator

I am casein, whey, all forms of milk intolerant! Just really figured it out from a food intolerance test. However, a ton of foods showed up for me, and some of which I have never noticed an issue with. Food intolerances are definitely real, however, I think there still needs to be more research on how a food intolerance can or can not damage the body. The best confirmation is to keep a food journal and do a rotation diet. Elminate dairy for a few weeks, then introduce it back in and notice if symptoms start to return. Intolerance symptoms usually differ from classic allergy symptoms--they are more like-- gastrointestinal issues, head aches, fatigue etc. I am actually cf/milk-free right now for a few weeks to see how I feel. According to the test I am also intolerant of just about everything! --rice, egg, milk, soy, almonds, peanuts, some fruits and vegetables too.

The lab I used was great plains. I used them b/c they were less $ than york, and my insurance actually paid for it, whereas my insurance won't pay for york. You can ck them out at Open Original Shared Link

Jnkmnky Collaborator

We're not casein intolerant that I know of, but since posting here we've decided to go dairy free. We've got Pacific rice milk *almond and hazelnut flavored, and Lundberg farms drink rice *vanilla and original flavors. I'm using olive oil and pam. We had tacos without cheese, made Chebe without cheese. I've been gluten free before in my life for 4 months one time. I felt better. This is the first time I've ever been dairy free and I feel GREAT. I really notice a difference in my energy, my senses, my circulation. I can't believe how noticiable the dairy free has been for me. My kids say they feel great, too. They all like the rice milk on their cereal. They had apple butter *no dairy in that* on their toast yesterday and thought it was great. We aren't missing it at all. My husband tells me that he'll go along with this until he wants ice cream. I didn't expect him to go along AT ALL! But he's on board. I think when he has that first bowl of ice cream, he'll feel gross inside and have a better understanding of how bad dairy is for his body. So, I'm actually looking forward to his first bowl of ice cream. Why do you feel you need to pay for an expensive test to go dairy free? I believe dairy free can be evaluated by trying it for a week or two. Are you afraid of the restrictions added to the gluten-free diet? Kinnikinnick makes lots of gluten-free casein free bread products that are very tasty. Chebe can be prepared dairy free. Rice milk is ooookkkkaaay. Kids can get used to it faster, I think. Coffee isn't quite the same without half and half, but the Almond flavored Pacific rice milk is pretty good. You have to add a lot, though. I've read that the body absorbs nutrients better when you go dairy free. You can look that up to see for yourself. There are reasons this is true, I'm just not equipt to explain. ;) Our country has the highest consumption of dairy products in the world and the most cases of osteoporosis and hip fractures because dairy consumption causes the body to be unable to absorb calcium! I'm making a large salad everyday, filling it with spinach, grapes, tomatoes, etc and we're eating it with lunch and dinner. Supposedly, there's plenty of calcium in leafy greens, etc to give our bodies what we need.

tarnalberry Community Regular

Casein induced villi damage is very very rare. It can happen, but mostly it just causes uncomfortable symptoms. And it's not detected by the same tests as the gluten intolerance testing.

I determined I was having problems with dairy by doing an elimination diet. I plan to test it again in the future, however.

Emme999 Enthusiast

I'm allergic to all forms of dairy - including the components whey & casein. I found out by means of an ELISA blood test (through US BioTek labs). Otherwise I would not have known! How wild is that? I had guessed that I was lactose intolerant, but had no idea about the allergy - and that I was actually causing trouble for myself while ingesting huge amounts of whey protein on a daily basis.

When I removed dairy from my diet (mid-March), I had a lot of problems resolve. I'd had such a wicked case of bursitis that I had to drop out of my spinning classes as the University and had been in pain all of the time - when I got rid of the allergens (milk products - eggs - sesame), my body stopped hurting. That was much more productive for me than any anti-inflammatory!

There are a ton of links that talk about the dangers of milk products. I listed some of them in another post a while ago: Open Original Shared Link

I came across another site last night that might be helpful to those who are trying to avoid casein (along with gluten). I haven't had much time to look at it - but it seems pretty informative. Here's the link: Open Original Shared Link

Best wishes to all of you!

- Michelle :wub:

aaascr Apprentice

I was diagnosed some 20 years ealier of having allergies (not just intolerance) to dairy, eggs, and a lot of other proteins as well. Celiac was simply the icing on my already flat cake... ;)


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



Celiac.com Sponsor (A8-M):



bmorrow Rookie

Hi,

I am casein intolerant. I was diagnosed by York and EnteroLab. I have had trouble all of my life with dairy products. I could never drink milk, and if I ate ice cream, I would become congested and also have stomach problems. I also tested intolerant to yeast, but I don't avoid it like I do the casein and gluten. I still have stomach problems with bloating and gas, so it could be the yeast???

Merika Contributor

I test allergic to dairy (York +1) but eat cheese. I lose weight, get leg aches, and generally feel like crap after several weeks NOT eating it. Milk gives me stomach cramps, and I avoid it.

That said, I do not tolerate yogurt well, but I don't get the same reaction as I do with milk. I think I have (an additional) reaction to the acidopholus added. I figured this out after taking probiotics for 4 days and thought I was going to die, i had such a bad reaction (and they were gluten-free). I have never felt so sick, cold, and *wrong* in all my life. :blink:

Also, the fruit in yogurt is processed with alcohol, so if you are allergic/intolerant of alcohol, that could be an issue too.

Merika

mytummyhurts Contributor

I have been gluten-free for a few months now and feels lots better. I haven't taken anything else out of my diet. I do know about lots of people w/celiac disease having dairy issues too, but I haven't noticed anything yet. Maybe because my celiac disease was caught really early on, my villi wasn't as damaged and I'm not sensitive to lactose.

What exactly is casein? Is it only found in dairy?

Carriefaith Enthusiast
Casein induced villi damage is very very rare. It can happen, but mostly it just causes uncomfortable symptoms.
Tiffany, do you have any info on this? I am quite interested.

What exactly is casein?
Casein is the milk protein
tarnalberry Community Regular
Tiffany, do you have any info on this? I am quite interested.

Open Original Shared Link

There are some others on pubmed, but I can't find the ones I saw a while back and don't have time for the search. (Can't remember the exact search term I used... :-( )

Carriefaith Enthusiast

That's fine! Thanks Tiffany :)

skbird Contributor

I was tested through EnteroLab and found to be negative on casein intolerance (I was 6, and <10 is negative). I eat a lot of cheese, some goat milk, yogurt every day. I am also not noticably lactose intolerant. But I possibly have a connective tissue disease and everything I've read says that dairy can cause inflammation which worsens those conditions.

I'm really confused about this. Is it possible to not be casein or lactose intolerant and *still* need to drop dairy? I can't decide what to do. I have been having a lot of gastro problems lately (8 months gluten-free at this point, and avoiding several other allergens/intolerances) and I'm just super bummed out at the idea of possibly having to drop dairy, too.

Does anyone else here have any kind of connective tissue disease, and if so, have you dropped dairy? I'm pretty optimistic about things but wow, this might be a biggie for me. Nevermind the possibility of another disease! Sheesh!

Stephanie

tarnalberry Community Regular

I believe that some people have a problem with whey (another milk protein) that is separate from the casein issue.

Also, I have heard - but do not know that there's sufficient evidence about this one - that the byproducts in milk from the large-scale dairy industry does affect some people sensitive to the items. So you might consider organic, small-scale dairy farm products. And some people believe that dairy just isn't good for grown people anyway - particularly dairy from another species.

julie5914 Contributor

What is connective tissue disease? I have stiff muscles more than usual lately and a leg injury I got last Fall from running that won't go away, but I don't think I have anything...

mouse Enthusiast

I have been tested for food allergies and they came up with all dairy products, soy, corn. egg whites, peanuts. The dairy is my highest and I try to avoid it like the plague. But, I still like a cheese omelet - one egg white the rest are yokes, maybe once a month. But then I have to breath on my nebulzer two times in a row to stop the wheezing. I also carry an Epi-pen. Finally after almost 20 years I stopped craving a glass of milk with a tuna fish sandwich. I was told that mine is not casein, but the protein. I also have some food intolerances, but the others are definately allergies.

Armetta

tarnalberry Community Regular

I find avoiding casein (which I discovered I needed to do by a dietary test) to be harder than avoiding gluten. :-(

tinaturb Newbie
I know that casein intolerance is linked to celiac, but I don't know to what extent. I have definitely felt better gluten free, but sometimes I react to yogurt (don't seem to have trouble with milk). Most of all, I don't want to be doing all this gluten-free work for nothing and have damage from casein. I know that I am not lactose interolernt from a breath test.

So, do you guys also have casein intolerance, and how did you know for sure? I don't get blood levels checked again until Oct.

<{POST_SNAPBACK}>

I KNOW I am alos casein intollerant. I do handle GOAT products a bit better and can take Lactaid to help, SOMETIMES!

Tina :rolleyes:

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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

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

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    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

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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/
×
×
  • 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.