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

Sometimes I Can Tolerate Carrageenan, Sometimes I Can't?

Pyro

By Pyro
in Coping with Celiac Disease

Recommended Posts

Pyro Enthusiast
Pyro
Posted

Emphasis on CARRAGEENAN because it took me 5 minutes to learn how to spell! And I still don't get it.

Sometimes I can drink something like say pacific hazelnut milk and have no problems. It will make me feel kind of full but that's to be expected. But then I'll go and drink something like Silk or pacific almond milk and my stomach will instantly bloat and cramp.

What's with that?

Right after I posted this, I read the health concerns found here:

Open Original Shared Link

Hmmmm... Still I wonder why we do fine with it at least some of the time.

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

Celiac.com Sponsor (A8-M):


jnclelland Contributor
jnclelland
Posted
Emphasis on CARRAGEENAN because it took me 5 minutes to learn how to spell! And I still don't get it.

Sometimes I can drink something like say pacific hazelnut milk and have no problems. It will make me feel kind of full but that's to be expected. But then I'll go and drink something like Silk or pacific almond milk and my stomach will instantly bloat and cramp.

What's with that?

Maybe your problem is soy? Pacific's almond milk contains soy lecithin, but their hazelnut milk doesn't.

Jeanne

sickchick Community Regular
sickchick
Posted

I can't tolerate soy lecithin OR carageenan... and it makes me crazy! :) HAHAHA

Pyro Enthusiast
Pyro
Posted
  • Author
Maybe your problem is soy? Pacific's almond milk contains soy lecithin, but their hazelnut milk doesn't.

Jeanne

Wow, maybe! Though soy sauce, soy ice cream, tofu, and lechitin don't seem to bother me.

mslee Apprentice
mslee
Posted

I'm wondering about these too.

Seems like they both cause problems, I've been using rice milk and it seems ok

this is so weird, really we just experiment with all these things until we can tell what exactly is the problem ingredient???

I tried making an allergist apt and they had never heard of celiac, the lady wanted to know if it was something they put in food. They other office I called said they had never heard of it either and that if any of my allergy tests came back neg. my insurance would not cover them.

guess I have more phone calls to make.

Is there any other option???

RiceGuy Collaborator
RiceGuy
Posted

There's also the possibility of CC, which can vary from batch to batch. So one time it might bother you, and the next time not.

But anyway, if you have a blender, you can make your own nut/rice/soy milks. It'll save you money, and you get to choose the ingredients. Some xanthan gum or guar gum works fine in most cases. I've done this many times.

  • 2 years later...
Austin Guy Contributor
Austin Guy
Posted

I got glutened this morning and paid the price in the bathroom, but started feeling better more quickly than usual. Then I had canned soup late in the day that contained carrageenan, which I knew nothing about. I was in the bathroom several times within 25 minutes just as if I had been glutened again.

I have had the same soup when feeling non-glutened a couple of weeks ago and was fine. Is my reaction to this stuff perhaps turned up a notch because of accidental gluten ingestion? Can getting glutened make people more sensitive to other food products? Seems like it would.

Still so very new to this - some adventure!

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,674
    • Most Online (within 30 mins)
      7,748
    Susieq2
    Newest Member
    Susieq2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • StevieP.
      Cruise and GliadinX

      By StevieP. · Posted

      Thanks so much for that information!! That helps me out alot!!
    • Scott Adams
      Help needed

      By Scott Adams · Posted

      It’s completely understandable to feel confused and anxious—colonoscopy prep can feel overwhelming, especially when you’re already dealing with symptoms like loose stools and elevated inflammation markers (that high calprotectin and CRP definitely warrant further investigation!). Regarding the senna tablets: The warning about avoiding senna with IBD (like Crohn’s or colitis) is typically because it can irritate an already inflamed colon. Since you don’t yet have a confirmed diagnosis—but your brother has colitis—it might be worth calling your gastroenterologist’s office today to clarify if you should skip the senna given your symptoms and family history. Some clinics have an on-call nurse who can advise quickly. For the prep itself: Plenvu is strong, so if your bowels are already loose, the senna might be overkill. Stick to clear liquids tomorrow (broth, apple juice, etc.) and stay near a bathroom! For anxiety, remember the procedure itself is painless (you’ll likely be sedated), and the prep is the hardest part. Bring a phone charger or book to the clinic, and treat yourself afterward to something gentle on your stomach (like mashed potatoes or yogurt). Hang in there—this is a big step toward answers. You’re doing great advocating for yourself!
    • Scott Adams
      Wheat Straw Dishes

      By Scott Adams · Posted

      Great question! Wheat straw dishes are typically made from the stalks of wheat plants (which are naturally gluten-free) combined with a binding resin. While the straw itself shouldn’t contain gluten, the safety depends on how the product is processed. Some manufacturers may use wheat-based binders or process the straw in facilities that handle gluten, creating cross-contact risks. To be safe, I’d recommend reaching out to the company directly to ask: 1) If their wheat straw material is tested to confirm it’s free of gluten proteins, and 2) Whether the production line avoids cross-contamination with gluten-containing ingredients. Many brands now cater to gluten-free consumers and will provide detailed answers. If you’re uncomfortable with the uncertainty, alternatives like bamboo, ceramic, or glass dishes are inherently gluten-free and worry-free. Always better to double-check—your diligence is totally justified!
    • Scott Adams
      Lost

      By Scott Adams · Posted

      I’m so sorry you’ve been struggling for so long without the answers or relief you deserve. It’s incredibly frustrating to have a celiac diagnosis yet still face debilitating symptoms, especially after decades of strict gluten-free living. Your history of chronic health issues—SIBO, food allergies, recurrent infections, and now potential complications like nerve pain (left leg) and mucosal ulcers—suggests there may be overlapping conditions at play, such as autoimmune comorbidities (e.g., Hashimoto’s, Sjögren’s), nutrient deficiencies, or even refractory celiac disease (though rare). Stanford is an excellent step forward, as their specialists may uncover missed connections. The medical gaslighting you’ve endured is unacceptable, and while legal action is an option, focusing on thorough testing (e.g., repeat endoscopy, micronutrient panels, autoimmune markers, skin biopsy for dermatitis herpetiformis) might be more immediately helpful. Menopause can absolutely exacerbate underlying inflammation, so hormonal imbalances should also be explored. For symptom relief, some in the celiac community find low-dose naltrexone (LDN) or mast cell stabilizers helpful for systemic issues, but a functional medicine doctor (if accessible) could tailor supplements to your needs. You’re not alone in this fight—keep advocating fiercely at Stanford. Document everything meticulously; it strengthens both medical and potential disability claims. Sending you strength—this shouldn’t be so hard, and you deserve real solutions.
    • Scott Adams
      Immunologist Referral if IgA Deficient

      By Scott Adams · Posted

      Since you have a confirmed celiac disease diagnosis alongside severe IgA deficiency, consulting an immunologist is a reasonable step to better understand the implications of your immune status. While many IgA-deficient individuals remain asymptomatic, the deficiency can occasionally be linked to increased susceptibility to infections, autoimmune conditions, or other immune-related concerns. An immunologist can assess whether additional monitoring or preventive measures (e.g., vaccinations, infection screening) are warranted. Given your location in Atlanta, academic medical centers like Emory University may have immunologists familiar with IgA deficiency, even if they don’t specialize exclusively in it. Telemedicine is also a great option—consider reaching out to specialists at institutions like the NIH, Mayo Clinic, or Cleveland Clinic, many of whom offer remote consultations. If you haven’t already, checking with the Immune Deficiency Foundation (IDF) for provider recommendations might help. It’s always wise to gather expert insight, especially since celiac and IgA deficiency can coexist with other immune dysregulation.
×
×
  • Create New...