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

A Cheesy Note To Newbies With Secondary Lactose Intolerance


ABQ-Celiac

Recommended Posts

ABQ-Celiac Rookie

For those newish celiacs with secondary lactose intolerance, like me, I wanted to give a shout-out of encouragement.

 

When I was first diagnosed in October 2012, one of the hardest pills to swallow was my secondary lactose intolerance. I couldn't imagine living without dairy. I read on this forum and many others that secondary lactose intolerance often went away in 6 months to 2 years. I banked on it. I prayed for it.

 

Every once in a while I'd try to a small milk chocolate candy or a small piece of cheese, but I always felt nauseous a short time later.

 

Until 5 and 1/2 months passed. Then I had a small amount of cheddar cheese on my eggs. No problem. I tried shredded cheddar on my potato fine. I've not yet experimented with REAL milk yet, or ice cream, but being able to add cheese to my daily bowl of rice has made me happy.


I feared, after the first couple of months, that I had lost dairy forever. Now I'm hopeful one day to glug a big glass of REAL milk again, and dive into some ice cream.

 

Hang in there, I guess, is the message. I've received so much support from these forums, I wanted to share this encouragement with others.


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



Celiac.com Sponsor (A8-M):



alesusy Explorer

Hi ABQ - good for you!

I still have a severe lactose intolerance (gluten-free since December 2012) but I've found out thankfully, that I can eat well seasoned cheese (Parmesan cheese more than 24 months old is available here in Italy) because it does not containt lactose any more (or less lactose). However I can't have milk nor fresh cheese nor butter nor even large quantities of de-lactosed milk and mozzarella that are on sale in some shops here. Having Parmesa grated on my rice is a big help.

Patrish Newbie

For those newish celiacs with secondary lactose intolerance, like me, I wanted to give a shout-out of encouragement.

 

When I was first diagnosed in October 2012, one of the hardest pills to swallow was my secondary lactose intolerance. I couldn't imagine living without dairy. I read on this forum and many others that secondary lactose intolerance often went away in 6 months to 2 years. I banked on it. I prayed for it.

 

Every once in a while I'd try to a small milk chocolate candy or a small piece of cheese, but I always felt nauseous a short time later.

 

Until 5 and 1/2 months passed. Then I had a small amount of cheddar cheese on my eggs. No problem. I tried shredded cheddar on my potato fine. I've not yet experimented with REAL milk yet, or ice cream, but being able to add cheese to my daily bowl of rice has made me happy.

I feared, after the first couple of months, that I had lost dairy forever. Now I'm hopeful one day to glug a big glass of REAL milk again, and dive into some ice cream.

 

Hang in there, I guess, is the message. I've received so much support from these forums, I wanted to share this encouragement with others.

I am totally lactose intolerant yet I can eat most Cabot cheeses.  It says right on the package 0 grams lactose.  The same with some Kraft cheeses, especially the low moisture mozorealla.  I have had no reactions.  Please be careful if you are sensitive to casseine.

Celiac Mindwarp Community Regular

I am 7 months in and I think I just got parmesan back, as long as I don't overdo it. Couldn't manage cheddar, yogurt or milk, but I am hopeful for one day :)

Thanks for sharing, I love the positive stuff

IrishHeart Veteran

Thank you for posting with such encouraging news for the newbs! :)

 

We all say "hang in there" and "you can get those foods back someday", but it ALWAYS helps to have someone say "Look at me, I'm eating cheese (or some other food that gave them grief) again!! whoohoo!" .

 

It took me almost 15 months to get back small amounts of dairy but I seem to have my own slow , steady pace of healing.

After 2 years, I can have ice cream. yaay!!

 

Not sure I am ever going to glug a big ole glass of cow's milk again, but that's okay. I'm good with it.

 

Good for you and when you do have that ice cream---let us know. 

Cheers!

Ninja Contributor

I'm at 14 months and can handle all dairy - foods with high amounts of lactose in moderation. I don't think I'll ever go back to drinking cow's milk straight though...

 

Thanks for sharing, I love reading about progress others have made/continue to make. :)

Pegleg84 Collaborator

I didn't develop problems with dairy until a couple years after going gluten-free (or was in denial about any problems beforehand, so kept eating it.) I'm pretty sure casein is my problem more than lactose. I've been dairy free for over a year. I'm finding now that I can handle very small amounts of aged hard cheeses, and small amounts of clarified butter. So here's hoping that I'll be able to nibble on some cheese without fear sometime in the next year.

I haven't drank a full glass of milk in years, so I can survive without that. Almond milk is doing just fine as a substitute, but I need cheeeeese!

 

Cheers

Peg


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.

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

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748

    Bea71
    Newest Member
    Bea71
    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

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.