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

A Cheesy Note To Newbies With Secondary Lactose Intolerance

ABQ-Celiac

By ABQ-Celiac
in Coping with Celiac Disease

Recommended Posts

ABQ-Celiac Rookie
ABQ-Celiac
Posted

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
alesusy
Posted

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
Patrish
Posted

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
Celiac Mindwarp
Posted

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
IrishHeart
Posted

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
Ninja
Posted

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
Pegleg84
Posted

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.

Go to topic listing

  • 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. PixieSticks
      - PixieSticks replied to PixieSticks's topic in Super Sensitive People
      2

      Working in a kitchen with gluten?

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply.
    2. BoiseNic
      - BoiseNic replied to BoiseNic's topic in Dermatitis Herpetiformis
      11

      Skinesa

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It...
    3. knitty kitty
      - knitty kitty replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Feeling ill

      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches. Really works well without hurting the digestive tract. Riboflavin B2 also helps with migraines. Most newly diagnosed people have vitamin and mineral deficiencies. Check with your doctor and nutritionist. If you follow the updated...
    4. Scott Adams
      - Scott Adams replied to Brianne03's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Advantages vs. Disadvantages of having an official Celiac diagnosis

      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    5. Scott Adams
      - Scott Adams replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Feeling ill

      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity. Approximately 10x more people have non-celiac gluten sensitivity...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,531
    • Most Online (within 30 mins)
      7,748
    FriendOfCeliac
    Newest Member
    FriendOfCeliac
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • PixieSticks
      Working in a kitchen with gluten?

      By PixieSticks · Posted

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply. 
    • BoiseNic
      Skinesa

      By BoiseNic · Posted

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
    • knitty kitty
      Feeling ill

      By knitty kitty · Posted

      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
    • Scott Adams
      Advantages vs. Disadvantages of having an official Celiac diagnosis

      By Scott Adams · Posted

      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    • Scott Adams
      Feeling ill

      By Scott Adams · Posted

      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
×
×
  • Create New...