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
julie5914
Posted

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
frenchiemama
Posted

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
jenvan
Posted

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
Jnkmnky
Posted

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
tarnalberry
Posted

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
Emme999
Posted

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
aaascr
Posted

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
bmorrow
Posted

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
Merika
Posted

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
mytummyhurts
Posted

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
Carriefaith
Posted
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
tarnalberry
Posted
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
Carriefaith
Posted

That's fine! Thanks Tiffany :)

skbird Contributor
skbird
Posted

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
tarnalberry
Posted

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
julie5914
Posted
  • Author

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
mouse
Posted

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
tarnalberry
Posted

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

tinaturb Newbie
tinaturb
Posted
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.

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

  • Member Statistics

    • Total Members
      132,918
    • Most Online (within 30 mins)
      7,748
    Dizzyma
    Newest Member
    Dizzyma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
×
×
  • 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.