Carrageenan and Celiac Disease

red seaweed

Carrageenan is a food additive that is extracted from red seaweed.  It is used as a thickener and emulsifier and is found in dairy products, processed meat, soymilk, toothpaste, and ready to feed infant formulas. I first came across it on an ingredient list early in on my gluten free (and food label reading) life. Once I learned that it is gluten free and “natural,” I assumed it was safe for me to eat as a celiac. However, a few months ago I began developing GI upset every time I ingested it, and I cut it totally out of my diet. Based on what I have now learned, I am glad that carrageenan is out of my life and kitchen.

First of all, the definitive answer to the question, “Is carrageenan safe for celiacs?” is never going to be known in our lifetimes.  No one is going to pay for a randomized controlled trial in which one group of celiacs are fed carrageenan and one group are fed a placebo, and outcomes of the two groups are measured. It’s just not going to happen.

Carrageenan has antiviral properties and stimulates the immune system.  On a quick search through the Pubmed.gov database, carrageenan aids in killing viruses and is being researched as an additive in treatments for HIV, enterovirus, and human papilloma virus.

When rats are given carageenan, they develop inflammation and arthritis-type symptoms.  Many studies of anti-inflammatory medications involve giving the test medications to Carrageenan exposed, and hence, inflamed rats and monitoring for improvement and side effects.

Research has shown that animals given carrageenan in high doses develop polyps, ulcers, tumors, and inflammation of the intestine. Most of the published research on the effects of carrageenan on human cells and tissues is by Dr. J. Tobacman from the University of Illinois, Chicago.  In the past year she has shown that carrageenan leads to enzyme changes and an inflammatory response in human intestinal and mammary cells as well. See link for more information.

There are two types of carrageenan. The first is degraded, or low molecular weight, and is the type which has been shown to cause inflammation in animals and human cells. It is not used in food products and products for human consumption.  The second type is undegraded, or high molecular weight, and is the type which is added to foods and beauty products.  There is an widespread belief that undegraded carrageenan is safe, and according to the Stonyfield farms website:

The scientific literature overwhelmingly concludes that undegraded carrageenan is safe to eat.  Based on this independent review of the literature, along with the Board’s recommendation to continue to allow it in organic production, we feel that carrageenan continues to be a safe ingredient to use.

What we don’t have any information about is whether or not our bodies convert some of the undegraded (“safe”) form to degraded (“unsafe”) form after we have eaten it. There are a few small studies from the 1970s which show that this chemical change occurs in the intestinal tract of rats and guinea pigs.

The European Union has banned the use of carrageenan in infant formulas due to concerns about safety in this population.  I just checked the website of the major U.S. formula makers and it is still present in most ready-to-feed formulas commercially available in the U.S.

Dr. Weil, M.D., one of the nation’s leaders in integrative health, spoke out against carrageenan in October 2012 (see link), stating, “I recommend avoiding regular consumption of foods containing carrageenan. This is especially important advice for persons with inflammatory bowel disease.”

As a Celiac I’ve made my decision and there’s no turning back now….

48 thoughts on “Carrageenan and Celiac Disease

    1. Jess Post author

      Hi Joy,
      Thanks for reading and stopping by. I am curious to see if we will all be advised to avoid carrageenan in the future…
      Best wishes!
      Jess

  1. Dana

    This is so interesting! I’ve seen carrageenan and often wondered what it was. Sounds like something my family should steer clear of. My husband may have celiac, never diagnosed but he’s gf and has had mysterious health issues for years. Inflammation is something he tries to avoid so this post is very helpful. Thank you!
    -Dana

    1. Jess Post author

      Hi Dana,
      Yes, I am glad to be removing carrageenan it from my kids’ diets as well since all 4 of them are at such high risk of developing celiac disease. My husband is not a Celiac but it’s in his family and we know that he has one of the 2 main genes associated with it too.
      Fortunately it doesn’t seem to be in any foods that are essential for us, which is good, and I think it will be a lot easier than giving up gluten was for us!
      Jess

  2. Paula @CeliacCorner

    Yes, I’ve heard this about Carrageenan and many people do experience gastro symptoms after consuming it. Another great reason for avoiding processed foods (& yes, it is in so many products, including dairy, but can also be found in organic foods). Once again, the European Union is on the ball with banning it for at a min. infant fomula. Perhaps more studies will be done here and hopefully the US will follow suit (right after the FDA finalizes the gluten-free labeling guidelines :)

    Thanks for sharing, great article!

    1. Jess Post author

      Hi Paula,
      If I wasn’t reading labels as a result of having Celiac Disease and being on the lookout for gluten, I would have had no idea that carrageenan existed. Yes, the FDA guidelines will be lovely, whenever they materialize!
      I am working on taking all processed foods out of our home. I picked up a jar of name-brand peanut better when I was grocery shopping a few weeks ago and I swear that there were about 8 ingredients in it, including soy protein and rapeseed oil. It was the last straw for me!
      Anyway, sorry for my rant and thanks for reading! I really enjoy your page too.
      Jess

  3. Debbie Young

    I can understand your frustration struggling with Celiac. My mother in-law suffers from it as well, not to mention several other food issues, and it has become increasingly difficult to find foods that she can eat. However, that being said, I would like to share with you the following, it might answer some of your questions/concerns about carrageenan. Of course this can’t dispute that a person could be allergic to carrageenan, heck, there are people allergic to water.

    SO MUCH FOR THE MYTHS CONSIDER THE FACTS ON CARRAGEENAN FOR A CHANGE

    Q. What is Carrageenan??

    A. Carrageenan is a naturally-occurring seaweed extract. It is widely used in foods and non-foods to improve texture and stability. Common uses include meat and poultry, dairy products, canned pet food, cosmetics and toothpaste.

    Q. Why the controversy?

    A. Self-appointed consumer watchdogs have produced numerous web pages filled with words condemning carrageenan as an unsafe food additive for human consumption. However, in 70+ years of carrageenan being used in processed foods, not a single substantiated claim of an acute or chronic disease has been reported as arising from carrageenan consumption. On a more science-based footing, food regulatory agencies in the US, the EU, and in the UN’s Food and Agriculture Organization/World Health Organization (FAO/WHO) repeatedly review and continue to approve carrageenan as a safe food additive.

    Q. What has led up to this misrepresentation of the safety of an important food stabilizer, gelling agent and thickener?

    A. It clearly has to be attributed to the research of Dr. Joanne Tobacman, an Associate Prof at the University of Illinois in Chicago. She and a group of molecular biologists have accused carrageenan of being a potential inflammatory agent as a conclusion from laboratory experiments with cells of the digestive tract. It requires a lot of unproven assumptions to even suggest that consumption of carrageenan in the human diet causes inflammatory diseases of the digestive tract. The objectivity of the Chicago research is also flawed by the fact that Dr Tobacman has tried to have carrageenan declared an unsafe food additive on weak technical arguments that she broadcast widely a decade before the University of Chicago research began.

    Q. What brings poligeenan into a discussion of carrageenan?

    A. Poligeenan (“degraded carrageenan” in pre-1988 scientific and regulatory publications) is a possible carcinogen to humans; carrageenan is not. The only relationship between carrageenan and poligeenan is that the former is the starting material to make the latter. Poligeenan is not a component of carrageenan and cannot be produced in the digestive tract from carrageenan-containing foods.

    Q. What are the differences between poligeenan and carrageenan?

    A. The production process for poligeenan requires treating carrageenan with strong acid at high temp (about that of boiling water) for 6 hours or more. These severe processing conditions convert the long chains of carrageenan to much shorter ones: ten to one hundred times shorter. In scientific terms the molecular weight of poligeenan is 10,000 to 20,000; whereas that of carrageenan is 200,000 to 800,000. Concern has been raised about the amount of material in carrageenan with molecular weight less than 50,000. The actual amount (well under 1%) cannot even be detected accurately with current technology. Certainly it presents no threat to human health.

    Q. What is the importance of these molecular weight differences?

    A. Poligeenan contains a fraction of material low enough in molecular weight that it can penetrate the walls of the digestive tract and enter the blood stream. The molecular weight of carrageenan is high enough that this penetration is impossible. Animal feeding studies starting in the 1960s have demonstrated that once the low molecular weight fraction of poligeenan enters the blood stream in large enough amounts, pre-cancerous lesions begin to form. These lesions are not observed in animals fed with a food containing carrageenan.

    Q. Does carrageenan get absorbed in the digestive track?

    A. Carrageenan passes through the digestive system intact, much like food fiber. In fact, carrageenan is a combination of soluble and insoluble nutritional fiber, though its use level in foods is so low as not to be a significant source of fiber in the diet.

    Summary
    Carrageenan has been proven completely safe for consumption. Poligeenan is not a component of carrageenan.

    Closing Remarks
    The consumer watchdogs with their blogs and websites would do far more service to consumers by researching their sources and present only what can be substantiated by good science. Unfortunately we are in an era of media frenzy that rewards controversy.

    Additional information available:
    On June 11th, 2008, Dr. Joanne Tobacman petitioned the FDA to revoke the current regulations permitting use of carrageenan as a food additive. On June 11th, 2012 the FDA denied her petition, categorically addressing and ultimately dismissing all of her claims; their rebuttal supported by the results of several in-depth, scientific studies. If you would like to read the full petition and FDA response, they can be accessed at http://www.regulations.gov/#!searchResults;rpp=25;po=0;s=FDA-2008-P-0347

    1. Jess Post author

      Hi Debbie,

      Thank you for reading and sharing your information about carrageenan.

      I know that I have an intolerance to carrageenan and I felt compelled to write about it after interacting with dozens of other celiacs on the internet forums who also have problems after consuming this substance. In many of us, carrageenan produces symptoms similar to those of gluten cross-contamination (abdominal pain, diarrhea, bloating, and then widespread inflammation a day or two later). While I am not convinced that carrageenan is harmful for the general population, I believe that those of us with Celiac Disease need to be careful, especially as we likely consume more carrageenan than the general population does (as it is being used with increased frequency in GF foods).

      I was able to find the article which you shared. It appears to be a response to a post called “What is Carrageenan?” on the wisegeek.org site (that is, unless the responder that I found had cut and pasted it from somewhere else!) Interestingly enough, I did look back through the pubmed.gov database and found a study which was paid for by Nestle in 2008, showing that up to 8% of food grade carrageenan is of low molecular weight. This is much higher than the 1% claimed by the author of your post. I am not sure where he or she got the 1% from, unless it was older data than the Nestle study.

      There have been several recent studies showing that up to 40 to 50% of celiacs have incomplete bowel healing on repeat biopsy, despite being on the GF diet. This, coupled with the new information Dr. Fasano has recently shared about zonulin and the role of the “leaky gut” in autoimmune disease, has led me to refuse to take any chances with a food additive that may play a role in intestinal inflammation. Again, I am not trying to say that carrageenan should be avoided by everyone. However, I am concerned that it may not be as safe for Celiacs as it has been billed to be. Although wheat gluten is “safe” for most, as we know, for Celiacs it is damaging and must be avoided at all costs!

      I do appreciate your feedback and found the FDA response to Dr. Tobacman to be interesting. Thank you!

      Jess

      1. Bill

        I started making smoothies for my wife and I a couple of weeks ago. I don’t know why I did not put two and two together, but I added coconut milk to our smoothies and my wife started to complain that something was wrong. She started to feel nauseated when she drank the smoothie. She then started asking to omit things from her smoothie, but then she said nothing is working and said to quit making them as she was feeling to nauseated every time she would consume one. At the same time I was getting bad lower stomach cramps that I started living with. I thought it was the yogurt as I would also started feeling sick with eating cheese. I then started taking probiotics and taking two enzymes when I drank the smoothing hoping to counteract what I thought I was developing lactose intolerance. Well a few days ago I had a very bad night with severe cramps and several trips to the bath room. I then thought I had to get rid of milk products for good. Well thank God that I started searching the internet and somehow stumbled across the word Carrageenan and started finding out the symptoms of being allergic to this additive, well I went into the kitchen and read the ingredients on my coconut milk and there it was. I then went looking the next day for coconut milk without this and could not find it so I chose 365 Almond milk without. The good news is my wife is no longer nauseated and likes her smoothies once again. It took about three days and I also feel a lot better. I am sure glad not to be lactose intolerant, but I really feel that warning labels on foods that has this ingredient should be mandated. There seems to be an a lot of people who cannot tolerate this carrageenan ingredient and like my wife and myself have no idea.

        1. Jess Post author

          Hi Bill,
          I am so glad to hear that you and your wife figured out that carrageenan was making you ill. It took me a while to figure it out too.
          Interestingly enough, since I wrote this piece in January 2013, Stonyfield Farms (who I quote in the article as claiming that carrageenan is safe), has announced that they are going to remove carrageenan from all of its foods. Eden oragnic foods is removing it as well. I have a feeling that, with time, we will be seeing less and less of it in our food supply, thankfully!
          Thank you also for taking the time to post. I appreciate any feedback and am glad to learn that this was helpful for you. I think that the more of us with Celiac Disease who can communicate and share ideas, the better.
          All the best to you and your family!
          Jess

    2. Melissa

      Debbie Young likes to go all around the internet and post FAQ on carrageenan from Ingredients Solutions, the world’s largest supplier of carrageenan. In other words, these are the industry lobbying talking points, about as trustworthy as those from Monsuch-and-such and the other Big Agra megacorporations who play Frankenfood lincoln logs with my food supply. http://ingredientssolutions.com/so-much-for-the-myths-consider-the-facts-on-carrageenan-for-a-change/

      A good question for Debbie: Why do you care so much, i.e. WHO IS PAYING YOU?!

      1. Jess Post author

        Hi Melissa,
        Thank you. I did Google Debbie Young and I found her all over the place supporting carrageenan. I’ll let others know.
        Jess

  4. Sharon

    OK I quickly looked through the comments. Don’t know how I missed this website. I am working with two celiac groups – and we are trying to determine (and If not test) to see if the seaweeds used to produce carrageenan (there are two red species), as well as other seaweeds used in food products contain an inner protein core that is gluten-like – that has an amino acid chain that matches the proteins that make up gluten… One celiac group PhD told me that my issue must be with digesting complex polysaccharides however that makes no sense since I have no issues with any other food stuffs of that makeup and my symptoms are not just GI but joint pain as well. He then went on to say that there was this big amino acid sequencing project of 5000 foods to see if any other foods contained gluten….and noted that the seaweeds must have been tested…yet he could not/would not confirm this “fact”. Through process of elimination I learned that my remaining symptoms were related to carrageenan – and any misstep related to this substance causes me issues. I then ate some canned Eden beans that contained kombu (brown) seaweed – same symptoms as if I had eaten gluten…so there is something about seaweed for folks with celiac/CD or GS – it is all over the blogs. Can’t tell you how many folks who have continuing symptoms have been helped by my recommendation to avoid products containing seaweed and carrageenan. I have requested that Dr. Oz address this…to no avail…one day he had some dairy product’s ingredients up to note the artificial sugar being added and all I could see on the screen was the ingredient CARRAGEENAN!

    My theory is that seaweed is the wheat of the ocean in more ways than one.

    1. Jess Post author

      Hi Sharon,
      Thank you so much for stopping by and sharing your experiences with carrageenan, as well as the research you are undertaking to look at the proteins in seaweed and see if they are similar to gluten. There really seem to be too many of us experiences the same symptoms upon ingestion for it to be a coincidence.
      I have not tried any other seaweed derived products, nor do I want to now that you’ve shared your information with me, but I will help to get the word out about potential risks.
      Please keep me in the loop with what you find and thank you for taking on this project, as the information you find will help so many of us! Just this week I have noticed in pop up in yogurt and tooth paste that, up until recently, did not contain it.
      Jess

    2. John Omielan

      I have not been formally diagnosed as having Celiac disease, but I am quite certain that I do since any gluten, even small amounts (e.g., in hydrolized protein, but without any wheat, in a multi-vitamin that I took) causes symptoms of fever, headaches, tiredness, mental fog, etc., for about a day afterwards. Well, I got the same symptoms, at least once and I am quite sure several times before, from ice cream at McDonalds since I am otherwise careful of all of the other foods that I eat now (I assumed that ice cream would not have any gluten). I just had a MacDonald’s cashier check their ingredients list to find that carageenan was on that list. Since nothing else there should be causing me any problems, plus from what I have read about it causing inflammation, and especially about it possibly containing a gluten-like protein from your post above (thank you for providing it), makes a lot of sense to me now. I will now avoid that ingredient in everything that I eat, just like gluten.

      1. John

        One thing to note is that, although I am lactose intolerant, when I use lactaid type tablets I don’t suffer any problems from milk or products made from just milk. Also, there is some grocery store ice cream that I have eaten quite a bit of without any apparent problems, so my symptoms are not inherently caused by ice cream itself. I have not checked this other ice cream’s ingredients list but I suspect that it has no (or much less) carrageenan or perhaps a different type of it.

    3. Karen

      Hi, Sharon! (Or anyone else familiar with what she commented on) I was just wondering where I can find out more on the seaweed/gluten protein similarity. I’m Gluten Intolerant but there are certain products/foods that still give me similar symptoms as when I ingest gluten…carrageenan being one of them. I’ve also had issues after eating ‘sushi’ rolls but figured something must have gotten tainted with an indiscernible amount of either soy sauce or tempura. When I eat salads at home, I often precede them with miso soup I make with seaweed. All GI discomfort after such salads has always been blamed on the raw greens. But since reading your post, I’m wondering if there isn’t truth to what you’re researching and if I am, in fact, allergic to the seaweed?!!! Would love to know more…I entered my email to post this comment. If you find out more, can you obtain my email from the site administrator and let me know? Thanks so much! Karen

      1. Jess Post author

        Hi Karen,
        It’s Jess, the admin. I messaged Sharon and when I hear back from her I will share your email with her. I recently tried searching the University of Nebraska’s “Allergen Online” database to see if there are similarities in the molecular structure of gluten and carrageenan and other seaweed and I came back empty handed. I’m hoping that we can eventually find more answers. In the meantime there are a bunch of us avoiding carrageenan like the plague (which is getting more and more difficult to do because it’s hiding in a TON of products).
        Jess

  5. Sharon

    Jess,

    I noted the mention of Dr. Joanne Tobacman. Last year, I contacted her and another colleague of hers who has done extensive animal testing with carrageenan…I never heard a response. Then the other day, after finishing a conversation (at a Healthy Villi conference) about carrageenan with the Beth Israel CD nutritionist and patient, Melinda Dennis who wrote the book with Dr. Leffler, I read about Tobacman’s study. Again, no one is answering what seems to be a key question – has anyone tested the 2-3 red seaweeds and brown/kelp/kombu and other seaweeds fed to humans – raw or processed for its inner protein core, AA acid sequence to see if it matches the glutenin or gliadin of gluten?

    Carrageenan has become a mammoth (multi-million dollar) industry. I am sure FDA does not want to take down one huge industry by a new ruling on this. My ophthalmologist was amazed that my – once severe, recent years low-level eye inflammation that I have had for 30 years – cleared up with my CD diagnosis/GF diet. My last visit he chuckled about some manufacturer bragging about the use of carrageenan (a “natural” substance) that has so improved the texture of their product…but he could not recall which product/company it was. I actually queried this seaweed scientist/grower from Ireland who works with the carrageenan industry about the AA sequence of these seaweeds but he only had the molecular structures and did not know any lab or university that might have dpne the AA sequences (if he only knew the reason I was asking!).

    I am telling you (as I told the folks at UChicago and UIllinois@Chicago) and anyone else who will listen (including the scientist at the Celiac Sprue Assn who noted these must have been tested in a 5000 food database project looking for gluten)- let’s just get some lab who does AA sequencing to test these – this way we can rule it out and the study based on symptoms alone is relevant (all we have); else if these ‘weeds contain a close match to the proteins in gluten then the manufacturers would be forced to label anything with carrageenan as “contains gluten”. Then you would see how fast – without an FDA mandate – manufacturers would pull carrageenan out of their products. This is my backdoor approach as I told Melinda Dennis.

    I have been on your website…I just did not catch this recent carrageenan thread.
    This was an interesting link that almost seems to connect MSG and gluten…if you think about it
    http://www.cornellcollege.edu/chemistry/cstrong/512/msg.pdf then this one
    http://www.marinalg.org/wp-content/uploads/2012/09/Do-carrageenans-contain-MSG.pdf
    then an article (Chicago Tribune) on that study:
    http://articles.chicagotribune.com/2013-03-18/health/ct-met-carrageenan-0318-20130318_1_carrageenan-fda-scientists-food-additive-safety

    Sharon

    1. Julia

      Their molecular structures aren’t very similar but both the reactions to carrageenan and gliadin appear to have something to do with the activation of TLR4 (toll-like receptor 4). The TLR4 signaling pathway turns on the innate immune response…

  6. Liz

    I have a new diagnosis of celiac disease, and have been just under 1 month gluten free. A family member just brought home some gluten free labeled “oreos” and I ate one- immediate heart burn (one of my many celiac symptoms). We looked through the ingredients- carrageenan. I had no idea.

    On another note, I successfully eat seaweed on a regular basis. Nori sheets, Trader Joe’s single serving “Roasted Seaweed Snack” which does not specify seaweed type, but tastes like the Nori sheets. I love them, they do not give me any problems. I eat them almost daily, for whatever that is worth.

    1. Jess Post author

      Hi Liz,
      Thanks for checking out my page. I hope that you are feeling well on the gluten free diet. I remember feeling so relieved when I was diagnosed in 2010 and it was such a nice surprise to feel healthy after all of the years of not.
      I have been avoiding carrageenan like the plague. It has crept it’s way into almost every coffee creamer, ice cream, almond milk, and coconut milk based product that I’ve checked out since writing the article earlier this year. It is pretty outrageous. I have gotten a fair amount of slack for writing that it may be dangerous for us, but I am going to continue to stand firm in my recommendation to avoid it! Please feel free to post questions or check me out on Facebook at any time. All the best to you on your journey!!
      Jess

  7. Sharon

    Hi Liz and Jess,

    As you both may know from my postings my only food issues are gluten-carrageenan-seaweed (whole? Both blade-leaf and stipe-stem?)-MSG (originally derived from seaweed – then wheat and now corn-based mostly). I know the seaweed snacks on the market (including Trader Joes) are from the blades/leaves of seaweed and are tested as GF for gliadins (I have seen the lab reports posted by some companies).

    So my theory is that it may depend on the species and type of red, green, and brown seaweed as well as to the part of the seaweed that is processed). The Nori snacks are not in the same red algae/seaweed family as the 2-3 types used for carrageenan – and I am unclear if the process used to produce the carrageenan uses the entire structure of the seaweed, and if the brown/kombu seaweed in the Eden beans also uses the complete structure – not just the blades. Again lots of apples and oranges here with differing species and the algae having 3-4 different parts that may be used in carrageen processing while only the blades (leaves) are used for the snacks.

    I actually corresponded with Dr. Tobacman who was unable to answer my question if the seaweed proteins of the species used to make carrageenan and used as other food products had been tested to see if the amino acid sequence of the proteins was similar to the gliadins and glutenins of gluten. She noted it was the sulfated glycoamins and links that are immunogenic in nature, but had no knowledge of any AA seq testing.

    I truly wish someone somewhere would take the time to do amino acid sequencing on these seaweeds used in the food supply. (I have seen some work done in this area, but again if it is not for the species used to make carrageenan then it is meaningless to those of us with celiac who react to this, and another caveat is that they need to test all the 4-5 parts of the seaweed structure separately since, for example, the leaves may be gluten free but the stems might not be. The Celiac Sprue Assn. PhD scientist noted to me a few years ago that they must have done testing of these when they performed AA sequencing of natural food products (a 5000 food database – somewhere?) to identify if anything other natural food products aside from what was already known (wheat, barley, rye, triticale, etc.) had gluten-like proteins, but he never was able to forward me concrete data nor a contact number for the team or lab that did the testing.

    Sorry to get into the weeds (hah!), but as a person from a clinical research scientific background, this is driving me nuts. I just cannot help but believe my theory (until someone disproves it) especially with my gluten-seaweed-carrageenan-MSG only reaction – no other food reactions – is all related and scientifically there is only one plausible one — the gluten connection.

    1. Jess Post author

      Hi Sharon,
      Some thoughts and questions:
      Where is this 5000+ database that the CSA PhD worked on, and how can we get her to actually check and see if carrageenan was tested?
      Is there anyone else in the U.S. who is investigating the harmful effects of carrageenan besides Dr. Tobacman?
      Has there been any work by an alternative medicine practitioners/naturpath world on whether or not carrageenan is a gluten “cross reactive” food?
      Are you going to the International Celiac Disease Symposium next week? I will be there and I will try to see if there is any pilot data looking at gluten and carrageenan?
      Jess

  8. Sharon

    Hi jess,

    I still believe we are missing something here between gluten-seaweed/carrageenan-MSG – and I cannot believe that the link is not gluten’s proteins. One fellow on another blog, after lecturing me on the difference between a scientific theory and hypothesis (I, was, of course, using theory as “idea”),sent me a link to a protein db site that allowed you to query for gluten. He entered chondrus crispus (most common, but not only red species used to make carrageenan) and came up with no gluten. (Need to look closer at this…can certainly sent this info/db to you). The thing is there are 2-3 types of red seaweed species used in carrageenan, and many others types used in our foods like the brown/kombu in Eden beans and who knows what species was used for those seaweed chips. We could be comparing apples and oranges. Then, there are 4 parts to an algae – blade (ala the leaf), float, stipe (ala the stem) and holdfast – and I suspect this “gluten” check database may just present what was tested in the blade/leaf that may well be gluten-free. (I almost feel like trying those seaweed chips to see if I have a reaction like on of those scientists centuries ago – testing themselves).

    All I know is anecdotally I have helped 3-4 celiac folks who could not heal by having them eliminate food products with carrageenan, seaweed or MSG/MAG.

    I need to boot up my old machine or search my recovered files (I may have saved the Email as a file) for the CSA scientist’s name and response he sent to me. Perhaps an MD as opposed to an RN with an MS in computers and a few decades of clinical research experience can elicit a more complete response from him. He would not budge with a detailed follow-up for me just the generic the “seaweeds must have been tested for gluten.”

    I am glad to have someone with me on this. I may be barking up the wrong tree here but it just seems odd that so many celiac and GS folks have issues with carrageenan/seaweed.

    I will note be attending – though would love to. Let me see if I can get that fellows name to you.

  9. Sharon

    Hi!

    I just wanted to let those following this carrageenan blog know that there is another seaweed-based additive to watch out for when purchasing products: ALGINATE as sodium/potassium/calcium alginate or algin or alginic acid.

    The past several weeks I had been having some GI, back and overall joint pain that I only have with an accidental gluten, carrageenan or MSG contamination. I have no other food sensitivities and can even eat clean field-to-factory oats and other natural complex carbohydrates without incident. Honestly, my overall health started to fail a bit recently (after feeling so great on a GF program these past few years), and I thought am I developing another autoimmune disorder? I started to consider the FODMAP diet to see if I could decrease the clear inflammatory process that was happening again to me despite my GF lifestyle. One night the symptoms became worse as I hung my head over the bed convinced I was going to toss (blaming the first grade class I sub’d for a few days earlier!). Every joint ached as I walked to the bathroom – did I have the flu? Thought about the past three to four weeks of growing symptoms and then the worsening ones the last two days causing a few bathroom sprints.

    Fortunately, we had not been out to eat so I was able to discern that it had to be something in our GF, CF (carrageenan-free), general seaweed free, and MSG free house. The only thing “new” I had eaten was two bites of my husband’s new GF bagel the morning before. OMG! I looked incredulously at the ingredients that listed sodium alginate – algae – seaweed(!) – this time an additive emulsifier from brown seaweed! Over the past few weeks on the weekend we had also been having this company’s bagel chips with salmon and cream cheese…thus my weeks of symptoms explained and related to my known issue with seaweed.

    My poor husband felt terrible as he had purchased these two delicious new Glutino products. Last evening he went to Whole Foods to buy some GF wraps and an associated company to this (UDIs) wraps contained alginate! I have alerted the companies and reminded them the reason they had taken out carrageenan from their cookies and other products – that many in the community they serve celiac and NCGS have issues with seaweed and these seaweed products produce a reaction as if these folks had ingested gluten. Alginate is made from a brown seaweed while carrageenan is from a red seaweed. (In an earlier posting I noted a reaction to brown/kombu seaweed in a can of Eden beans and alerted this company that often advertises in Living Without Magazine – whose chef recommended to use carrageenan and alginate in one’s baking!). I will also contacted the parent company of UDIs and Glutino – Boulder Brands, and we happened to own some stock in this company. This is a major concern because they just purchased Evol foods that has a GF line of products, and if Boulder redoed these products to contain alginate – well looks like we will all need to be cooking from scratch 24 x 7.

    A further concern for all of us who react to seaweed and these products is the use of alginate in medical dressings/burn dressing and other medical applications like tissue engineering. (Recall my NCGS sister-in-law had a severe reaction to a vaccine with MSG as a preservative.) What if it ends up in our medicines and dietary supplements like vitamins and minerals, acidophilus and other probiotics?

    What is it about seaweed for folks who have gluten issues? Determining this/finding a scientist to determine this is the key to getting this out of our food products – particularly gluten-free products. From a scientific standpoint for someone like me who has no other food sensitivities except for seaweed-based products (and MSG was originally produced from seaweed), My theory is there is some part of the 4-5 parts of the seaweed that has an amino acid sequence similar to the gluten proteins – gliadin and glutenin (though it seems only gliadin is tested for to certify GF yet research demonstrates that the glutenins are also toxic for celiac patients). Glutino is in the process of certifying their products as GF – the bagels and chips are not yet certified. I have to wonder if the real reason they took the carrageenan out of their two Oreo-like cookies was that it tested positive gluten proteins and could not be certified.

  10. Jennifer

    This is a small datapoint, but in my search this winter for egg nog I could tolerate, carrageenan seemed to be the decider. Without it I was fine and enjoyed my egg nog, with it I had GI symptoms. At least for me, however, other seaweed products like the nori used in my homemade veggie sushi and the snack packs of seaweed I eat were fine. Good luck sorting all this out!

    1. Sharon

      You can say that again! In the end I think we will find out that the type of seaweed and/or the fact the chips and Nori wraps are safe – free from gluten proteins but other parts of the seaweed used as salt preservative or to produce carrageenan and alginates have a gluten like proteins else it is an entirely different GI and autoimmune response for which celiac and NCGS folks are more susceptible.

      1. Jess Post author

        Hi Sharon and Jennifer,
        Thanks for stopping by this thread and letting us know what you’ve discovered about alginate. I’ve seen it as an ingredient with increasing frequency and I always considered it “safe” so I’ve never batted an eye at it. Sharon, I am pretty sure that I owe you and email from before the holidays.
        Jennifer, thanks for sharing your experiences with other seaweed derived products and carrageenan.
        I am going to link to this post on my Facebook page in the upcoming weeks and see if other celiacs have any input/ideas about carrageenan. I know that Steve, “The Gluten-Free Professor” who has a blog and a FB page has personally gotten very ill from carrageenan on numerous occasions.
        Jess

        1. Sharon

          Honestly Jess, this was truly a “blind” test as I knew I was not feeling right for weeks – and when I started to get really sick (with clear celiac symptoms) and then reassessed what we had been eating I then discovered the only new foods where those GF bagel products. Though, I now see a GF flax and a millet bread that I occasionally use for a sandwich now also contains alginate…I don’t think it was in it when we originally started to purchase it over a year ago. So re-read all ingredients of even products deemed initially safe as they are starting to change the ingredients in two of the main GF brands on the market to include the alginates – though, as noted, seemed to voluntarily omit carrageenan.

          I would just love to know the basic science of this inflammatory process with the seaweeds – and it is not just due to processing – as seaweed used purely as a preservative is also an issue.

  11. Sharon

    One other point to this mix that I may or may not have made already is that I have seen foods such as seaweed chips be certified GF yet testing is only for gliadins. Another example are carb products with carrageenan that are also certified GF. So my question is what about the glutinins as toxic proteins for celiac folks? Does seaweed or carrageenan or alginite made from these red and brown species have something gluten like in their protein or perhaps even low enough to clear the Gf certification <20 ppm but high enough that it impacts some of us who are very sensitive to exposure or perhaps it is just a separate inflammatory immune sensitivity. It just seems odd that I and many others with CD and NCGS who have no other food sensitivities would react in an identical manner to seaweeds and substances produced from seaweed. One CD nutritionist specifically asked me at a conference if it were just GI symptoms (and there are many when I eat seaweed) but I noted the arthritic ones as well. Again identical to ingesting gluten.

  12. Icha

    Hi all, I’ve been reading this and it’s really interesting. I found this post because I am pretty sure that I can’t eat carrageenan. I thought my reactions were due to wheat because I only got a bad reaction eating cereal. I do NOT have celiac (negative biopsy), and I can actually eat oats just fine, which my doctor says means I also don’t have NCGS. But I do have an IgA deficiency and I was wondering if the others of you who have problems with carrageenan are SIgA? since carrageenan seems to cause intestinal inflammation, that would make a lot of sense…
    I checked pubmed and there doesn’t seem to be anything about this.

    1. Jess Post author

      Hi Icha,
      I am not personally aware of a link between selective IgA deficiency and carrageenan reactions, but this particular post gets a lot of traffic, so perhaps someone will share a similar experience (hopefully).
      Also, just as an FYI, it’s a bit unclear to me how being able to eat oats would definitively rule out NCGS. 88% of oats that are not marked as GF in the US are gluten-contaminated, but NCGS patients have differing sensitivities to gluten contamination, so some non celiac gluten sensitives can actually tolerate regular oats without symptoms. I totally believe you, but I am not sure that your doctor is correct. As both a doctor and a patient I find myself questioning what doctors day more and more often, as the longer that I’ve been practicing, the more that I realize how much I do not know, if that makes any sense at all…
      Jess

  13. Sharon

    Hi Jess,

    I contacted Cornucopia a few weeks back about my gluten-like response to alginates now being added to GF food products and recalled my reaction to a can of Eden beans with brown seaweed my first year gluten free. The person who responded noted they would contact Dr. Tobacman about this. I made this point to her a few years back that I felt it was something innate in the seaweeds and not just a processed carrageenan from red seaweeds issue. I believe the starting point is to ID the common species of red and brown algae being used in our food supply and run a chemical, biochemical and protein a analysis including amino acid sequencing on each part – holdfast, stipe or stem, blade, and float. I think we will find that the blades are predominantly carbs and safe while other parts contain more proteins that may be close to the gliadins and glutenins and these parts are used as seaweed preservative and to make carrageenan and alginates/alginic acid.

    Jess this will become a big issue for CD and NCGS folks as they are starting to use these in OTC meds and even perhaps Rx ones. I could not believe that Gaviscon that I used to use for my GERD attacks before my diagnosis now contains alginate! The gluten free professor noted how this issue is not on the radar of the GI docs many of whom advise their patients against trying. GF diet to help their symptoms.

    I have contacted the two US reps woking on the gluten in medicine disclosure bill as I feel the bill need to address more than just gluten now but the fact that inactive ingredients cover an array of foods people are sensitive to such as soy, lactose, corn, iron nerve mind talc and now seaweed substances. From my years in clinical research I understand well that FALCPA only covers foods and dietary supplements and that OTC meds and prescription meds are under their own umbrellas as well; however it seems the reps would be better off petitioning FDA to force them to apply FALCPA to the inactive ingredients that are from food products. I have yet to get this out to them in a formal email.

    1. Jess Post author

      Hi Sharon,
      Your dedication to this is amazing. I feel like we need to create a special task force led by you.
      Besides Dr. Tobacman, you, The GF Professor, and me, is there anyone else you’ve come across who is passionate about this issue? I am almost wondering if it would be worth it to create a separate page/blog/forum of some sort to attract the attention of others and to be able to drop information, documents, articles, etc. into. I have never done such a thing, this self-hosted WP blog is the extent of my web page making abilities. I’d love to hear your thoughts…
      Jess

  14. Sharon

    Hi Jess. I must not have checked follow this and missed your posting – and life gets in the way sometimes! I really believe strongly (you couldn’t tell) that this seaweed/seaweed product issue is a critical leading edge one for CD and NCGS folks that is essentially unrecognized by mainstream celiac specialists and dieticians. When Jennifer Esposito was still feeling ill I posted the gluten-like response I get to carrageenan – shd did her research and started a blog…and though I have not read it yet she mentions it in her book.
    If this were simply another common food sensitivity for CD folks especially those who are unhealed that would be one thing; however from the numerous patient blogs out there with the topic of carrageenan many folks have only an issue with gluten and seaweeds and perhaps MSG. This brings up the glutamic acid glutamate issue but as I noted to one person who asked I have no issue whatsoever with foods high in glutamic acid – in fact I feel great when I eat more protein foods. There is a difference between glutamic acid and glutamates. Seaweeds do appear to be high in Glutamate so I do not think this is the issue. And again I reacted to a can of beans with kombu brown seaweed as a preservative not proceesed into alginates (the brown algae version of carrageenan).

    Now that two of the major GF manufacturers have snuck in alginates and GERD meds like Gaviscon has these as well – despite removing carrageenan from their products per customer demand. If we do not get some recognition/acknowledgement about this seaweed and seaweed product issue for many of us we will have no products out there to eat on occasion in terms of a sweet or a bread. Our GF bakery uses almond milk with carrageen so that is off our list. The number of unhealed CD folks who then heal after removing carrageenan laced products from their diet cannot be ignored. I have requested a few times Dr. Oz do a program on this. I know Dr. Weill is is not a fan of carragenan not sure about seaweeds in general, however other holistic docs on the show have touted the anti inflammatory actions of seaweed.

    I was really disappointed to see Living Without GF magazine’s chef a few years back recommended using carrageenan as a thickener, and there was an entire section about using seaweed in cooking without I do not believe any note about how these cause some issues.

    Jess I would be more than happy to lead something in this area. It seems the starting place is to identify the common species of red and brown seaweeds used in food products and try to find a lab that has done or is willing to do amino acid sequencing. It may disprove the AA sequence potential link but it is a logical starting point.

    I will send you a mail about an interesting experience – berating actually – by a local celiac group not specifically about this seaweed thing but my encouraging unhealed folks to talk to their docs and dieticians about an anti inflammatory diet and elimination diet. I feel strongly also that if this is not done soon after or concurrent with going GF with the caveat that once you heal you can add some things back – many give up on the GF program as GI typically issues don’t resolve to severe health consequences.

  15. IrishHeart

    Hey Jess!

    I could have just emailed you with this information, but I thought maybe others may benefit from reading this post as well.

    Since you also have MCAS and a histamine intolerance (as I do), perhaps it is of some value to note that carageenan has a high histamine content…and that is perhaps why it gave you gastro upset?

    I usually follow the straight line rather than theorizing in the absence of peer-reviewed studies.
    You know, occam’s razor? :)

    I sincerely doubt people’s assertions that carageenan has a gluten-like protein component. If it were the case, the celiac researchers would be all over it.

    I know you agree with me that not everything that bothers us has to do with gluten. I can’t eat too many oranges , tomatoes or soy. It’s not a gluten thing. It’s just my gut and histamine intolerance. My husband (not a celiac) has gastro upset from cucumbers, watermelon and other foods from the gourd family. Just his gut.

    While it may not be an additive we wish to see in our all foods, someone would have to eat an enormous amount of it to be a real hazard. I say this based on the articles I have read regarding testing it on animals.

    Bottom line: There is no research on the safety or danger of carrageenan for those with celiac disease.

    But of course, everyone should avoid any foods or beverages that bother them. That’s just common sense.
    Best wishes always!
    xx IH

    1. Jess Post author

      Hi Irish Heart,
      It is good to hear from you. I agree with you that there is absolutely no scientific evidence that there are any foods that “cross-react” with gluten.
      With time I’ve realized that the reactions that I get from carrageenan indeed mirror my reactions from other histamine rich foods, like soy. I do get diffuse inflammation when I eat carrageenan in addition to IBS symptoms.
      Like you, I suspect that those of us with celiac who have carrageenan “issues” most likely have either MCAS or histamine intolerance. Interestingly enough, I learned from Dr. Tennyson, one of the celiac researchers who was at the celiac center at Columbia up until recently, that there is a pilot study looking at the efficacy of cromolyn sodium (mast cell stabilizer) in the ongoing digestive systems in people with celiac disease. I am waiting for results and I will post them on my page as soon as they are available.
      Anyway, as always, thanks for being a voice of reason and experience. Much love to you!
      Jess

      1. IrishHeart

        Love you back :) …..and I always appreciate you sharing the research you uncover.
        You’re a wonderful resource and a generous and kind person.
        I will continue to share my findings as well.
        We’re in this together, dear Jess. ;)

  16. Sharon

    Hi Jess and IrisHeart,

    All I know is I and many others with celiac are very blessed in not having reactions to any other foods other than gluten, seaweed and seaweed -based products like carrageenan and now algin/alginates from brown algae and MSG and these seaweeds and related products and msg result in reactions/symptoms identical to gluten ingestion. As long as I
    eat clean field to factory GF grains, and fruits, vegetables, fish and meats I feel great and symptom free. I am very grateful.

    For many of us who do react to carrageenan and seaweeds/seaweed-based products it does not take a significant amount but even the smallest amount to cause a reaction. 1/2 of a small half-and-half creamer with carrageenan does it for me. A bite of my husband’s bagel with alginate – sick for 2 weeks with gluten ingestion like symptoms.

    This past weekend I thought I had dodged a bullet when I was making some drinks and could not buy my usual Dole pineapple juice at Whole Foods, and the organic one I purchased contained algin that I almost missed in the list of gums (when did we get so lazy that we cannot shake a bottle of juice before pouring needing everything in an emulsified state?) so I tossed everything I had put in the mix. An hour later I was sick as if I had ingested gluten – It took me a few hours to then realize that when I went to chill the juice I had poured a few ounces and taken a small sip of it – discarding the rest. In addition I have noticed that the stricter GF 5 ppm certified foods tend not to use these seaweed products while the 20 ppm ones do. Just an observation…

    Despite claims by scientists and doctors that seaweeds must have had amino acid sequencing done when testing for other foods over the years with gluten proteins no one I have contacted is able to provide the conclusive data. As far as doctors having anything on their radar recall theglutenfreeprofessor who asked GI doc after GI doc at a celiac conference about carrageenan that also makes him ill, and only one doctor had ever heard about it. Had a friend whose friend could not absorb iron and had been receiving for years iron transfusions until she started to have reactions. Someone finally thought to test for celiac which she of course had. So in this state where I live with major renowned hospitals on every corner the docs missed this. Five plus decades in getting my diagnosis. So not only do I not think the etiology of the reaction is not on the doctor’s radar – the fact so many of us even react to these seaweed-based substances is not on their radar.

    I don’t know the etiology that’s for certain. It is only a hypothesis but all I know is every celiac person I have met frustrated by not healing/continued symptoms despite a strict GF diet have found relief and many times healing by eliminating foods with carrageenan. I have helped some eat soy again as the realize it was not the soy in the soy milk but the carrageenan in the brand they were buying causing their symptoms. Many of the patient blogs cite example upon example of eliminating this substance and improvement in symptoms and healing. Unfortunately, the alginates, algin is now the new carrageenan – and it took me 2-3 months of degrading health last summer/early fall to recognize this new carrageenan was the issue. It is showing up in more and more foods and drinks and even OTC and prescription meds. I do not think we can underestimate the impact – known and unknown – to members of the celiac and NCGS communities.

    Sharon

  17. Sharon

    Almost three years since my diagnosis and this past year has been the worst ever in terms of contamination in restaurants with primarily gluten though seaweed additives are also suspected. I have been in this never ending cycle this year of two weeks of being ill then feeling great to once again get slammed. In my own gf kitchen it has mainly been the seaweed additives – carrageenan free we have been – but then I was hit with a major bread manufacturer suddenly adding alginates – another seaweed-based emulsifier. Just literally cleared a two/week period of being glutened in a restaurant to get sick again this evening -!upper abdomen swelling with gas, back pain with stiffness and spasms and joint finger pain. Cooked at home to discover it was the breakstones reduced fat sour cream that we have used for years suddenly now contains AGAR! It was the one reduced fat sour cream that had been free of seaweed -based additives.

    I feel as if I am in some SiFi movie being
    pursued by giant algae!!!

    1. IrishHeart

      ” primarily gluten though seaweed additives are also suspected.”

      Have you ever once considered that eating out so much in restaurants is in fact, actually glutening you and it has absolutely nothing to do with”seaweed”?? Gluten symptoms can last for weeks, so there is no way to determine that “sour cream” has now affected you from ‘agar”.

      Rule number 1 of science experiments –control factors. You eat out, you get sick.

      You should always suspect gluten CC first, not ‘seaweed”.

      Choose Daisy brand sour cream. Nothing in it but cream.

      1. Sharon

        Dear IrishHeart,

        Firstly, I can count on one hand the number of times I have eaten out this past year, and like most with celiac, the recovery from a multitude of symptoms, various systems, to being “glutened” is at a minimum two weeks. I have seen your not so nice replies to other people on this and other websites – and am no longer inclined to let it go or be as nice as others – including the site owners – have been to you. After this note, I will not even bother responding to you in the future due to your disrespect for me and others with whom you disagree. Secondly, I was feeling fine to then get sick from something cooked at home in my now three-year gluten-free kitchen (did you miss that in my note in you rush to dump all over me once again?) I have never gotten sick in my own kitchen with my own cooking save for ingredients such as MSG and food products like Eden canned beans that contain seaweed and hits from other foodstuffs with seaweed-based products (carrageenan, alginates, and now agar).

        IrishHeart – I am one of those lucky folks with celiac who can partake of clean field-to-factory oats, corn, rice, dairy (since healed) and just about every fruit and vegetable without ill effect. I would never, ever, tell others who have issues with these foods that they are mistaken – that it must be gluten not the milk that they drank or the oats they have eaten.

        Thirdly, I cannot tell you how many people I have personally helped heal or have fewer exacerbations – those with continued celiac symptoms or symptoms from other GI disorders. They are amazed when they cut out food products with these seaweed additives to see their symptoms clear.

        Your continued denial of my symptoms (and I might add those of numerous others like Jess herself) that we get ill (gluten-like symptoms or other symptoms) when we eat food products with these seaweed-based additives is essentially calling me and others liars or head cases, or that we are ignorant of the evidence in our kitchens and our experiences with these additives. The fact is that for years – including the last three – I have eaten that particular light sour cream when it had no additives without an issue. When I started to get ill that evening, I could not believe that it now contained agar- and then my husband said he noted in retrospect (and I agreed) that it was not smooth in texture but more jellified than in the past – clearly due to the new ingredient – agar – added as an emulsifier or to add ‘texture” as the seaweed product manufacturers like to say.

        My posting had three points for folks with celiac disease:

        1) Yes, watch out when you eat out – it could be gluten or seaweed-additives or allergens that make you sick like the proteins or lactose in dairy.
        2) My other point was that these seaweed food additives can be making you unknowingly sick.
        3) Standard food products that you bought and used for many years without ill-effect are increasingly adding these seaweed additives, emulsifiers added – and the evidence is clear in terms of the research by Dr. Tobacman with carrageenan – and my experience with the brown seaweed additives (alginic acid or alginate or sodium alginate) and now agar (also made from red seaweed as is carrageenan) is causing me gluten-like symptoms.

        Please learn to respect other people on these websites – and if you do not have issues with these additives you should be very grateful, but do not deny that they may well cause others issues and should be considered being removed from one’s diet if symptoms continue despite a strict GF diet.

        Finally, are you sure you do not work for the seaweed industry? I know they have threatened to sue Dr. Tobacman.

        1. IrishHeart

          (1) I did not deny your feelings or your symptoms. I just asked have you ever considered it?

          Your simple response could have been “yes,I have, but that’s not it”. Instead, you launch into a tirade. Geesh!

          (2) Why do you insist upon calling them “gluten-like symptoms”?? Why can’t you just say you have an “intolerance” for these additives?

          (3) I do happen to have several other food and chemical intolerances besides being a celiac, but I don’t refer to them as “gluten-like”–something that is very confusing for newly diagnosed people because then, they think these items have gluten in them.

          (4) I am not sure what you’re talking about, but Jess has no problem with my responses. Gluten Dude has no problem with my responses. In fact, he loves when I comment on his blog. No one has ever told me I have been unkind or disrespectful.

          (5) Yes, that’s it, I work for the seaweed industry and all day long, I go around and refute your claims. Come on! You can’t be serious with that question. But it did make me giggle. I don’t continually harp on one issue all over the internet. I have a life.

          Bottom line: There is no research on the safety or danger of carrageenan for those with celiac disease.

          But of course, everyone should avoid any foods or beverages that bother them. That’s just common sense.

          Despite your angry outburst at me, I wish you all the best.

          1. IrishHeart

            And one more thing, if you re-read Jess’ last post, she seems to agree with me.
            I’m just pointing that out since you are accusing me of “denying even her symptoms” . She calls me a voice of reason. Just sayin….

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