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

Casein Or Lactose?

MiamiMom

By MiamiMom
in Food Intolerance & Leaky Gut

Recommended Posts

MiamiMom Newbie
MiamiMom
Posted

Hi. Ever since my 7 yr old son went gluten free about a month ago, he cannot seem to tolerate dairy without getting terrible gas/cramps. His Enterolab results indicated a problem with casein, but honestly, with three celiacs and a Crohns sufferer with his own dietary needs in my house, it was just too much for me to deal with, so I didn't remove dairy from his diet.

Interestingly, just as soon as I went off gluten (at about the same time) I also started having a huge problem with dairy. I had never had a problem with dairy before. Ever. Thankfully, Lactaid helps a great deal.

I have a bunch of questions:

1) Why is this all starting now? Does something about eliminating gluten make lactose intolerance worse?

2) Can it actually cause LI?

3) Is this actually a casein reaction? If so, why does lactaid seem to help?

4) Is Lactaid safe for kids?

My son's results: Fecal anti-casein (cow

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

Celiac.com Sponsor (A8-M):


Guest j_mommy
Guest j_mommy
Posted

Alot of people have problems with dairy after going gluten-free.

Many people go diary free for awhile after going gluten-free and then start adding dairy back in...after giving the body some time to heal. For me...I went about a month dairy free and then started to add it back and I tolerate it now.

Hope that helps!

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Lactaid should not help with casein because they are different things. I am casein-free and feel soooooooooooo much better. If it is causing you and your son pain then you should listen to your bodies. Good luck.

hathor Contributor
hathor
Posted

It is certainly possible to have problems with both casein and lactose. The Lactaid would help with the latter, but not the former.

I don't think that eliminating gluten makes casein or lactose intolerance worse. You just no longer have the gluten symptoms masking what the dairy is doing to you. From what I've read, frequently people can have lactose again once they heal. But overcoming casein intolerance isn't that common. I think I've seen one person on this board mentioning this happening to her and that's it.

If your son is suffering from dairy, and has the test results to say he shouldn't have it, really he shouldn't. I know change can seem hard, but sometimes you just do what needs to be done. Sub in nondairy milk and read labels to make sure there isn't casein or caseinate in a product. If nothing else, you could try goat's milk. Its type of casein is different from cow's milk and your son might be able to tolerate it better.

MiamiMom Newbie
MiamiMom
Posted
  • Author

Thanks to everyone for the replies. I guess I just need to bite the bullet and do it.

Somehow, it just seems so much more daunting than removing gluten alone. I guess I worry that our food choices will just be too limited. Also, my son hates to feel different than the other boys and I feel I've pushed him as far as he is willing to go right now, even with the stomach pains.... He really is having a hard time adjusting to gluten-free life in a school setting, and his teacher is SO not supportive. He's just so much more fragile about the whole thing than my daughter, who honestly didn't bat a eye.

<Deep sigh> Well, there are worse things, eh? I should just count my blessings that I even know what's going on! We are still a world better off than we were last year at this time.

Thanks again. I truly appreciate it. :)

munchkinette Collaborator
munchkinette
Posted

I'm at the point where I need to remove something else as well, and I'm guessing it's dairy. Before going gluten-free I never had much dairy. I started eating more of it (and corn and soy and other stuff) when I went gluten-free because it was something I could eat. I think that's why I'm noticing other problems now. Whatever it is I can't eat, I'm getting more of it because I'm substituting it.

CuriousOne Apprentice
CuriousOne
Posted

I had a thought on this. Maybe the body developed a thick layer of mucus to deal with all the gluten. That layer of mucus was developed to protect the intestine against gluten... but it also worked to protect the intestines against say, casein...or soy....

So now that gluten is gone, your intestines are cleared up... the mucus may be gone... and your intestines are freshly reacting to casein.

Just a theory.

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

Celiac.com Sponsor (A8-M):


MiamiMom Newbie
MiamiMom
Posted
  • Author

You know, I actually had not considered that, but it is so true! We have been eating a lot more dairy to compensate for the calories lost elsewhere. It makes so much sense now... <light bulb goes off over my slightly dense head> :rolleyes:

MiamiMom Newbie
MiamiMom
Posted
  • Author

You know, I think you might be onto something there. For his Crohn's disease, my husband takes loads of Slippery Elm, which is basically a natural bark that turns gelatinous upon contact with water. It has been used for centuries by Native Americans for its healing properties, and it coats and soothes his insides. It has made a tremendous difference--even healing some of his lesions.

I mention this because even though he carries both the D2 and D3 genes, his tests indicate he is having no immunologic response. (I was about willing to bet my right arm that it was celiac disease that brought about the Crohn's, and then we got the results. Go figure.)

He could just be one of the lucky ones and gluten truly doesn't affect him (yet), or maybe all that slippery elm is coating his insides just enough to protect him, just as the mucous does in your theory. Interesting...

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. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    2. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    3. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    4. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
    5. Scott Adams
      - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748
    lalan45
    Newest Member
    lalan45
    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

    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Am I nuts?

      By Scott Adams · Posted

      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
×
×
  • 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.