Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

For Those Of You Who Cut Out Casein, Were You Able To Re-Introduce?


BelleVie

Recommended Posts

BelleVie Enthusiast

I'm slightly lactose intolerant, but not so bad that I wanted to cut dairy from my diet. However, I developed a rash and some other odd symptoms that lead me to suspect casein intolerance. I definitely feel better without it in my diet, but I'm hoping that someday I'll be able to eat cheese and fermented milk products again. Have any of you gone casein free, introduced it into your diet again, and felt okay? Or is it a long term kind of thing? 


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



Celiac.com Sponsor (A8-M):



MJ-S Contributor

It seems to vary for everyone. There are some on this board who have successfully re-introduced dairy after a few years. Me, I've been off dairy almost four years, and gluten-free for almost three years. I show no signs of being able to tolerate casein - I recently had a minor exposure through cc to dairy, and my symptoms were as painful as ever (severe stomach pain and nausea for three straight days, worse than a gluten reaction). I didn't, however, see the rash I usually get with dairy. This is not to discourage you, but also to not give you false hope. You may be one of the lucky ones, but for many casein intolerance is permanent.

flowerqueen Community Regular

I'm slightly lactose intolerant, but not so bad that I wanted to cut dairy from my diet. However, I developed a rash and some other odd symptoms that lead me to suspect casein intolerance. I definitely feel better without it in my diet, but I'm hoping that someday I'll be able to eat cheese and fermented milk products again. Have any of you gone casein free, introduced it into your diet again, and felt okay? Or is it a long term kind of thing?

I have to agree with. MJ_S and have not been able to tolerate dairy even after being gluten free for over 2 years (I gave up dairy about 1 & 1/2 years before I found I had Celiacs disease). I have a small amount of lactose in tablets I take and seem to be okay with that, but as lactose and dairy are not quite the same, I find even a small amount of dairy gives me really bad symptoms - on par with those experienced from cross contamination of gluten. A couple of years ago I was ill through Christmas and New Year and couldn't work out what I had eaten as I am very careful. Then, about a month after the Christmas holidays a grocery store wrote to me as through having a loyalty card with them, they had picked up on the fact I had bought something over Christmas which was supposed to be gluten/wheat/dairy free which had accidentally been contaminated with dairy and had written to warn me, although, as it was a seasonal item I had already consumed it for several days in a row - hence my severe reaction.

Sometimes, we all long for the foods we used to eat prior to diagnosis, but in my own experience, it's not worth the suffering (whether accidental or deliberate exposure to the foods). If I had 'just' had a rash though, instead of severe abdominal cramps, I may have been tempted to indulge - but only with diary, NOT gluten as the damage with gluten is done on the inside, even if it's not apparent on the outside. Hope this helps.

jiggles Apprentice

I'm slightly lactose intolerant, but not so bad that I wanted to cut dairy from my diet. However, I developed a rash and some other odd symptoms that lead me to suspect casein intolerance. I definitely feel better without it in my diet, but I'm hoping that someday I'll be able to eat cheese and fermented milk products again. Have any of you gone casein free, introduced it into your diet again, and felt okay? Or is it a long term kind of thing?

Hello BelleVie , I was intolerance tested and was told that I had a very strong reaction to casien and was recommended to cut all dairy out,

I did cut all dairy out for many years and it helped quite lot ,

but then the specialist hospital dietician told me to re introduce dairy , as she thought casien intolerance was quite rare and the tests may have been unreliable ,

so that got me wondering if I may have had a lactose intolerant all along ,

So after I had been gluten free for just over a year I reintroduced small amounts of dairy ,

At first I did try a glass of full cream milk over the day which didn't really agree with me ,

but I am so glad it didn't put me off trying the fermented yoghurt and cheese , which I seem ok with now ,

although I am careful not to over do it ,

I do hope it turns out the same for you BellVie and for others too on here ,

I could have easily given up after the glass of milk ,

but I am so glad I persisted with tiny amounts of yogurt and cheese,

just spoonfuls after a meal ,

and I can now tolerate a single serving of Greek yoghurt in a single pot ,

and did I mention my favourite chocolate brand :P ha ha , just warning you though, you may put on weight with all that yummy chocolate you may have missed for so long ,

but on a downside I do notice my joints and fingers hurt more if I eat too much Dairy

but I don't know whether it is related , but I guess it's something I will have to keep an eye on as it's still early days for me too ,

hmm I am just thinking about chocolate now and I haven't got any in the fridge, mmm chocolate buttons

Oh dang I will just have a nice cuppa tea and toast instead :)

Good luck Bell Vie please let us know how you get on if you decide to try any dairy ,

but just thinking that it may be a little bit to early for you though just yet and I can only tell you my own experience with casien , it may be wise to seek medical advise first before you re introduce it , I would really hate for you to have a nasty reaction ,

ps I found probiotics and digestive enzymes helped with wind and toots

:) Jiggles

love2travel Mentor

I was able to reintroduce it into my diet without and problems whatsoever after about a year. Now I can eat all the dairy I want very happily. :-) Hopefully you will find the same. Admittedly I had no rashes on dairy but lots of gas, diarrhea, etc. In fact, my lactose or casein intolerance gave me worse GI problems than gluten.

The best of luck to you!

BelleVie Enthusiast

Thanks everyone for responding. I just wasn't too sure about the difference between lactose intolerance and casein intolerance. I know that many celiacs can heal over time, and their bodies can eventually digest lactase, but I wasn't sure if casein is the same, or if, because it's a different kind of protein, once your body says "um, no thanks," it's going to be like that forever. Kind of like with gluten. :) 

jiggles Apprentice

Thanks everyone for responding. I just wasn't too sure about the difference between lactose intolerance and casein intolerance. I know that many celiacs can heal over time, and their bodies can eventually digest lactase, but I wasn't sure if casein is the same, or if, because it's a different kind of protein, once your body says "um, no thanks," it's going to be like that forever. Kind of like with gluten. :)

I thought that too BellVie , but I have been amazed at how things have changed, it's a crazy thing ,

once I went gluten free and started to feel a bit better,

I then found I would react to some of the foods I used to be ok with ,

but I was then able to re introduce them at a later date like a lot of others on here , I followed their advice and it was such a great help,

I found that if I ate something my body didn't want , it would send out signals like joint pain, muscle aches feeling sick again or swollen glands under my chin, and dizziness and head aches too, especially if I ate too many processed gluten free foods ,

but these signals went away once I removed the offending foods ,

Now I find I can slowly re introduce most foods in very small quantities, but only if I listen carefully to what signals my body is sending out

as I find too much of anything seems to upset it ,

forgive me if I am waffle I just think it may help others too :)

It was the same with Casien which I think is the protein found in cows milk products,

hopefully someone else will know more about Casien

and the reaction it actually produces within the body

I was pretty scared to re introduce any Casien again as I used to have such a bad reaction

especially if I drank cows milk on an empty tummy,

it made me go very hot and sweaty and I sometimes felt like I was going to be sick or faint

then later on it would cause nausea, gas, cramping and the big "D" very much like a gluten reaction .

but I am really grateful it has cleared up

At first I just rinsed a little yoghurt around my mouth to make sure there was no reaction,

then the next day after a meal I ate a little spoonful with no problems , then went on to a little cheese and chocolate

It is indeed all very strange

Jiggles


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



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - DayaInTheSun replied to DayaInTheSun's topic in Coping with Celiac Disease
      5

      Being a burden to family/friends

    2. - Kiwifruit replied to Kiwifruit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Years of testing - no real answers

    3. - trents replied to Gill.brittany8's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

    4. - Gill.brittany8 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

    5. - Mnofsinger replied to Mnofsinger's topic in Related Issues & Disorders
      7

      Food Tasting Salty


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,836
    • Most Online (within 30 mins)
      7,748

    Art Glassman
    Newest Member
    Art Glassman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
    • Mnofsinger
      Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to.   1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor? 2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty". Thoughts?
×
×
  • Create New...