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

Celiac & Lactose Intolerance


JennyC

Recommended Posts

JennyC Enthusiast

My son was just diagnosed with Celiac disease via full panel blood work up. I had previously suspected that he had a milk allergy (Celiac symptoms?), but it turns out that he has no other allergies. I read that many people with Celiac disease are also lactose intolerant. How do I know if my son is lactose intolerant? :huh: I want to be sure that I remove all irritants.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

If your son's blood work was positive for celiac disease, his villi will be quite damaged at this point. The tips of the villi are supposed to produce lactase, the enzyme that helps us digest dairy. If there are no villi tips, you will have a lactose intolerance as a result.

That is why all people diagnosed with celiac disease should eliminate dairy for at least six months, giving the villi a chance to regenerate, before trying dairy again.

JennyC Enthusiast
If your son's blood work was positive for celiac disease, his villi will be quite damaged at this point. The tips of the villi are supposed to produce lactase, the enzyme that helps us digest dairy. If there are no villi tips, you will have a lactose intolerance as a result.

That is why all people diagnosed with celiac disease should eliminate dairy for at least six months, giving the villi a chance to regenerate, before trying dairy again.

Thanks! There is so much to learn!!! I am very grateful for this great resource and all of the people who participate in this message board.

georgie Enthusiast

So its possible to recover from a dairy lactose problem ? Is it the same for dairy casein or is that life long like Celiac ?

JennyC Enthusiast
So its possible to recover from a dairy lactose problem ? Is it the same for dairy casein or is that life long like Celiac ?

Casein and whey are milk proteins that cause an allergic reaction if you are allergic to them. It is similar to other allergies, but if it's a food allergy your body tries to rid itself of the allergen by vomiting or diarrhea. Lactose intolerance exists when you lack the lactase enzyme, so your body cannot digest lactose, causing discomfort. Two different problems. If you are lactose intolerant then you must avoid classic dairy foods. If you are allergic to milk proteins, then your diet restrictions must be much more broad, similar to gluten!

happygirl Collaborator

Some Celiacs are "temporarily" (short term) lactose intolerance, until they heal. After this, they can re-introduce dairy and generally do well with it. Some can't handle dairy very well after being glutened.

Others are lactose intolerant permanently, just like there are people with LI who aren't Celiac.

Some people never have any problems at all.

Keeping a detailed food journal, along with the type of day/symptoms, can help.

Laura

lmag Newbie

I am currently on a self-imposed 2 week dairy free diet to try to figure out if I am dairy-intolerant. I was diagnosed with Celiac last June, and have found some but not complete improvement as a result of going gluten-free. The last post discussed a difference between simply not tolerating dairy, and having an intolerance to casein. Can anyone recommend how best to figure this out? I wish I had heard the recommendation to go dairy free at the same time I went gluten free - then I might not be going through this now. Thanks!


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

I would also like to inquire if casein or lactose will cause damage to the intestines similar to gluten, or just cause discomfort and symptoms.

I know that this has most likely been answered several times. <_<

happygirl Collaborator

Lisa:

I don't think that lactose causes damage (to my knowledge), just discomfort/symptoms when we don't have enough lactase.

Casein, I think I've heard that it hypothetically can, in some people. I don't think they know enough yet.

Laura

Lisa Mentor
Lisa:

I don't think that lactose causes damage (to my knowledge), just discomfort/symptoms when we don't have enough lactase.

Casein, I think I've heard that it hypothetically can, in some people. I don't think they know enough yet.

Laura

Thanks Laura,

? What is the difference between lactose and lactase?

georgie Enthusiast
I am currently on a self-imposed 2 week dairy free diet to try to figure out if I am dairy-intolerant. I was diagnosed with Celiac last June, and have found some but not complete improvement as a result of going gluten-free.

I have just completed this. And I can say it made a huge difference to me. I lost some excess weight and also had lots more energy. Then I ate a chocolate Easter Bunny. I had no symptoms that day( unlike Gluten) so assumed I was OK. Two days later I was hit with this crippling bowel pain, and fatigue and that lasted for 2 days. It looks like I am dairy intolerant ! But is it lactose or casein ? And will it be forever? The symptoms were different to a Glutening - but not nice.

I have been told that later I may be able to have small amounts of goats milk cheese. But it looks like I need to be dairy free at the moment.

mpmarker Newbie
If your son's blood work was positive for celiac disease, his villi will be quite damaged at this point. The tips of the villi are supposed to produce lactase, the enzyme that helps us digest dairy. If there are no villi tips, you will have a lactose intolerance as a result.

That is why all people diagnosed with celiac disease should eliminate dairy for at least six months, giving the villi a chance to regenerate, before trying dairy again.

Ursa,

You are a wealth of information! I didn't know that about the villi. When I had my endoscopy the pictures they took and the biopsy showed NO villi present. Completely damaged. No one said anything about the dairy and I eat cheese on a daily basis. Maybe that's why the D not improving. Maybe I should cut out the dairy for awhile. I'm gluten-free for 2months, should I wait and then try dairy free, what is your opinion? My dr. doesn't give me much in the way of answers.

thanks for any help

mp

tarnalberry Community Regular

Some ways that dairy can be an issue:

  1. Temporary Lactose Intolerance - from villi damage, as the tips of the villi produce lactase (the enzyme produced by the human body) to break down lactose (the complex milk sugar); when the villi regrow, the ability to produce lactase reappears as well
  2. Genetic Lactose Intolerance - inherited, genetic lactose intolerance, and quite common in the world (causasians are the exception to the rule, really), where the body, after three or four years of age, slowly starts naturally producing less and less lactase; even caucausians find that, as they get into old age, they cannot tolerate as much milk, and their stomachs digest less lactose themselves, leaving more to be passed on to the intestines, where bacteria in the intestines break down the sugar, releasing gas as a metabolic by-product (and producing gas, bloating, and pressure-induced pain as sympotoms)
  3. Dairy Allergy - this is an allergy to the dairy proteins, usually casein (not as often whey) and usually primarily one of the subtypes of casein, which causes a standard IgE mediated allergic response, including possible rashes, itchiness, and - in very severe cases - anaphylaxis
  4. Casein Intolerance - an IgG mediated immune response, less well understood than the allergy, to the casein protein, that causes digestive complaints, very (very) rarely intestinal damage, and questionably systemic issues in people who are sensitive to it

CarlaB Enthusiast

Georgie, to test whether you're casein or lactose intolerant, take some lactaid, then drink some milk. If you're casein intolerant, it will make you ill ... if it's lactose, it won't. It won't be comfortable if you react, but at least you'll know whether you can take a lactaid next time you crave a chocolate bar! :P

I have heard that casein intolerance is permanent, but lactose intolerance can be temporary if it's due to the celiac damage.

happygirl Collaborator
Thanks Laura,

? What is the difference between lactose and lactase?

Lactose is the stuff in dairy that some people's bodies can't fully process/break down.

Lactase is the enzyme that breaks down the lactose. Hence, lactaid. Lactaid isn't medicine, but lactase supplements.

Lisa Mentor

Thanks Laura and Tarnelberry...it is clearer. This is tough stuff to understand.

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. - Peggy M commented on Scott Adams's article in Gluten-Free Foods & Beverages
      2

      Are Potato Chips Gluten Free? (+Video)

    2. - trents replied to numike's topic in Food Intolerance & Leaky Gut
      3

      is my cleiac disease gone?

    3. - numike replied to numike's topic in Food Intolerance & Leaky Gut
      3

      is my cleiac disease gone?

    4. - trents replied to numike's topic in Food Intolerance & Leaky Gut
      3

      is my cleiac disease gone?

    5. - numike posted a topic in Food Intolerance & Leaky Gut
      3

      is my cleiac disease gone?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,276
    • Most Online (within 30 mins)
      7,748

    Rebecca M
    Newest Member
    Rebecca M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
    • numike
      Check out this celiac story  I was diagnosed early 2000s with the blood test  since then I have for the most part maintained a gluten-free diet  Recently (August 2025) I drove from Southern Illinois to Lake Erie Ohio On the drive back I was extremely hungry and I had a coupon at a hamburger chain and I stopped and forgot to request gluten-free bun etc and quickly consumed two hamburgers. I promptly ate both of them and had absolutely no problem since then I've been eating plenty of gluten  Is my celiac gone?  Insert: No, celiac disease cannot just end because there is no cure for it; however, a strict, lifelong gluten-free diet allows the small intestine to heal and symptoms to go away. To manage the condition effectively, you must strictly avoid all sources of gluten, including wheat, barley, and rye, which are common in the American diet. Sticking to the diet can lead to significant symptom improvement and intestinal healing, but it requires ongoing commitment and monitoring with a healthcare professional  Regarding medical test I had My stools analyzed Giardia Ag Cryptosporidium Ag and they came back negative  I had the lactulose test and it came back high so I'm on two weeks of heavy antibiotics That still has not stopped me from eating gluten. Here's what I think is going on and I hope to have your opinion regarding it  Since I've been gluten-free for so long my intestinal tract has repaired itself consequently anything I eat with gluten now just bounces right off with no damage to my gut  however  when I asked AI what was going on the reply was celiac has not gone away and  if I continue to eat gluten I'm going to have problems   I look forward to your sage advice as to what the heck is going on with me Thank you for reading Mike 09112025
    • Scott Adams
      I agree, and generally it means that it isn't working in a high enough percentage of participants to continue pursuing it.
×
×
  • Create New...