Just when I thought I was on the right track, eating all organic, no soy, no dairy… etc. I found out most of the almond and rice milks I have been drinking (along with other things come to find out) have this toxic additive called carrageenan in them. Learning about this has just motivated me further, and hopefully will move you too, to opt for natural foods or ingredients that I can pronounce and/or know what they are.

Carrageenan is extracted from red seaweeds, has multiple forms and is used in cooking and baking. Similar to gluten, carrageenan works as an emulsifier and thickener keeping ingredients from separating, and while once was a natural additive, has become a highly processed additive. Carrageenan is known to cause gastrointestinal inflammation which disrupts the digestion process which can result in Inflammatory Bowel Disease, IBS, and even scarier there are links to colon and breast cancer. Although it is naturally derived from algae, studies since the 1930′s have questioned the safety of carrageenans. Despite the fact that some forms are “deemed safe for human consumption by the Joint Expert Committee on Food Additives” and FDA, there is a LONG history of debate of the safety of carrageenans.(1)

Through my research I found a very interesting website that caught my attention because it discusses both the health concerns and politics of carrageenans. Further confirming my point that we should always be aware of what we are consuming and a reminder that these big food industries DO NOT have our good health in their best interest! Just one example of what I read is that after a long and lucrative relationship between the Philippines (who became one of the main exporters) and the United States, it was not “until 1984, when the United States’ FDA questioned the safety of a Philippine product called “Semi-Refined Carrageenan” (SRC) and banned it from use in ‘the lucrative food additives market in the U.S.’ Not surprisingly, this ruling (which was also enacted by the WHO and the United Nations’ FAO), severely handicapped the Philippine economy. Then, in 1990, the FDA reversed its ruling and allowed SRC back into US food products.”(2) Scary!!!!

While the FDA and JECFA have approved carrageenan, the USDA’s National Organic Standards Board was said to vote at the end of May on whether it should be removed from the list of approved ingredients in organic foods.(3) In the meantime I wanted to list some commonly ingested foods or used items that you might want to be aware may contain carrageenans: desserts (cakes, ice creams, gelatins, pies, biscuits), dairy based foods, beer, toothpaste, shampoo, soy and almond milks, diet sodas, infant formulas, flavored milks.

~ Jennifer

This Post Has 42 Comments

  1. Michael Alan Smith

    There’s been politics in our food since the inception of both FDA, USDA, and every state board of health. In most schools a contract between a food distrubutor and the school board government drives what the kids eat and drink. It’s really absurd in many levels!!!

    1. natalie

      I was diagnosed with celiac in May after suffering with rash, gaining weight, loosing hair, being tired all the time for 2 years.
      I am still loosing my hair at times, do you know of any name brand shampoo, conditioners, hair sprays out there that dont contain gluten?? I have looked but its not really written in stone. Please help???

      1. Tandra Goodwin

        Costco has a great gluten-free shampoo and conditioner. Aveda, has hairspray called “brilliant” that is gluten-free ((not all Aveda products are gluten-free. Garnier hair color is great for my sensitive scalp. I also use Juice Beauty make-up and skin care, which is nice and it doesn’t irritate my skin. These products are the ones I use after extensive research.

      2. Kristine ODonnell

        I’m not sure but I’ve been loosing my hair too diagnosed with Crohn’s and everything is blamed on that. I’m brand new to this gluten free thing thank you Jen and CD. I can say that since using Wen my hair has slowed down falling out. I will look at the ingredients and post to you if gluten is in it.

      3. Anne

        Dove claims it’s products are g-free. Celiac.org lists a lot of products. There are also several blogs from fellow sufferers who have contacted companies and identified safe products. Unilever recently brought out a line of cleansers and face creams that are g- free, but they will not identify other allergens like soy. When I need a new product, I usually a google it and see what comes up. There is quite a community out there.

    2. Lisa

      Let’s just say that the Federal agencies charged with protecting our health are massively failing us, so we need to be ever vigilant. Jennifer, your blog is a huge step in the right direction! Thanks so much for the effort you’ve put into sharing your CD story, your discoveries and insights, and especially your terrific recipes. You’ve clearly done a lot of research, and worked to create the most nutritious recipes possible. To that end, I feel the need to share another source of information with you. I just read, and highly recommend Dee McCaffrey’s The Science of Skinny. I feel like giving a copy of this informative book to everyone who I care about. I guess “skinny” sells, but I recommend this book to anyone who has a desire simply to feel healthier and more energetic. I’m not following her food plan yet, but I’m already feeling like a completely different person since I began eliminating food additives and refined foods 3 weeks ago. I always thought that I was making healthy food decisions. I bought organic, ate lots of fruits & veggies, and faithfully avoided corn, unfermented soy, dairy, all gluten (even so called gluten-free options in the health food store and supermarket), and a variety of other allergens. I cooked and baked almost all of my foods from scratch, but I still felt sick and tired more often than not until I learned to reject a number of food myths and misinformation campaigns, especially about fats and sweeteners. I learned that agave syrup, evaporated cane juice, white sugar, “sugar in the raw”, turbinado, and even, brown sugar and beet sugar are every bit as processed and destructive to our health as high fructose corn syrup. Some safe sweeteners include maple syrup, brown rice syrup, coconut nectar, coconut crystals, palm sugar, Rapadura or Sucanat (which are organic whole cane sugar), black strap molasses, and stevia (but not “Stevia in the Raw”, Rebiana, Reb A, Truvia –forget about all laboratory created sugar substitutes, aka pesticides and neurotoxins, etc!). I also learned that extra virgin coconut oil (EVCO), a medium-chain saturated fat, is a very healthy fat choice (butter is fine too for people who aren’t avoiding allergens). EVCO is actually the safest non-dairy option for cooking and baking. Although labels on peanut, grapeseed, and other oils may claim to be safe for cooking at higher temperatures, and list zero transfats, they’re unstable. Their molecular structure changes after reaching about 300 degrees – - the transfats abound, and no one needs the free radicals! I miss you on the show, but I love the way you’re spending your time. I hope to visit your bakery soon. Keep up the good fight.

  2. Sharon

    My last posting did not seem to make it-probably too long. I have been contacting agencies and scientists who have been involved with carrageenan to test the theory that the red seaweeds and others (I react to brown seaweed as well) as if it were gluten. My theory is that the inner protein core of the seaweed polysaccharide has an amino acid chain similar to the gliadins and glutenines of gluten. Hopefully, Jennifer they will post my longer explanation – if this is proved – then celiac and GS folks need to have carrageenan and seaweeds in general on their dietary elimination list. After all seaweed has been called the grain or the wheat of the ocean.

  3. Karen

    Unbelievable….and I just read that if you have an issue with soy or corn then it is likely you will have a problem with xanthum gum…the symptoms are similar to those of the carrageenan…now what???
    Thank you for always keeping us updated

    1. Lisa Roach

      It’s insane how many food additives are corn based. I’ve successfully replaced xanthan gum with guar gum for this very reason. [per Wikipedia: "Guar gum, also called guaran, is a galactomannan. It is primarily the ground endosperm of guar beans. The guar seeds are dehusked, milled and screened to obtain the guar gum.[1] It is typically produced as a free-flowing, off-white powder.”]

      1. Terri

        We were aware of the situation & have eliminated it from our diet as much as possible. It was a shock to us to find out there are too many products that have this additive & it is frustrating to pick up a product and see this additive included.

  4. Sharon

    Keep in mind many celiac folks who are lactose intolerant improve over time on a GF diet as their villi heal allowing the epithelial cells at the tips that produce the enzyme lactase to once again function. Others seem to continue to have problems with dairy to then move to soy milk or even almond milk and continue with issues – thinking they now have a problem with soy. I believe it is the carrageenan in te non-dairy and so many dairy products that is the issue that prevents healing GI wise – for me when I accidently ingest carrageenan – the GI symptoms and joint pain are as if I had gluten yet it typically clears up in a week or so whereas gluten contamination can last up to 4-5 weeks for me with symptoms.

    I recommend for a month to first eliminate all food products with carrageenan as well as corn, xanthan gum and whatever you think are causing you an issue. Once you have a week clear of all symptoms continue to stay away from the carrageenan and any other seaweed products or additives – as these are a clear issue for many celiacs. One by one add in other things that you think may be an issue – add only one fodo type a week – start with soy for examples (if this has been an issue) but not soy milk that has carrageenan or you will muddy the test waters.

  5. Kathy Lamond

    Hi Jennifer,
    I love the show by the way. I just read about you in Gluten-Free living. I know all about your story because it is mine also. I have been a baker at home all my life since I was 16 years old. It was just what everyone did including all my grandma’s and my mom. Living in Utah, we store wheat, even a year’s supply. Who knew that we all were baking our way to some unknowen CD? Well anyway love your blog and wanted to make a comment on the diary free milks…I never liked Rice or Almond milk but I have found a new friend in INSTANTE MILK…and I use it everyday in everything and I can also have a year’s supply of it downstairs. (It’s a church thing) But try it, it mixes-up quick and easy and I make it before bedtime and it’s nice and cold to use for breakfast. Talk to you later, Kathy

  6. Micaela

    Hi Jennifer, I’m Micaela and I’m fourteen years old and having a quince in August when I turn fifteen! I just wanted to say that you are truly an inspiration to me. I was just diagnosed with a case of Celiac’s disease although it’s not as severe as some. However I am now about to try to cope with changing my diet which may change my life since mine revolves around food haha. I love to bake mostly and I love your recipes. I just wanted to say thank you for your dedication to CD and making it known to the world. Thank you!

  7. Sharon

    Regarding, finding carrgeenan free soy, almond, and coconut milk – the 365 Whole Foods brand is free of carrageenan…I know the Trader Joes versions are not, and I think WF not having the carrageenan in these is relatively new (but I could be wrong). Just about all other brands of soy, almond and coconut milk have this stuff in it – especially the ones in the boxes; however, most of the ethnic manufacturers of coconut milk can it free of this stuff. Elderly guy with gluten sensitivity issue and I were having a carrageenan talk – he was amazed how widespread it is in products – and he found the WF’s soy milk, etc. without it in them and came over to let me know this weekend. My husband loves shopping with me!

    WFs in our area also carries Organic Valley Buttermilk – for making pancakes, cornbread, etc. – this is the first brand I have seen without carrageenan. I am thrilled – the kids will be getting homemade GF-CF buttermilk pancakes and corn muffs this week!

    Finally, if you have issues with carrageenan – you may also have issues (as I noted) with seaweeds in general…WF carries Eden canned beans that have kombu seaweed (brown type) that I react to – while WF’s 365 canned beans are free from it.

  8. Laura

    Hi Jennifer,

    What a bummer! Another thing that I have to eliminate. Fortunately, the Whole Foods brand of almond milk does not have carrageenan. I cannot find a replacement for my coconut milk though. : (

    I would like to suggest that we take the time to write the companies who make our favorite products and ask they they find an alternative to using carrageenan. If enough people do so, maybe they will make a change.

  9. George Daniel Anos

    Dear Jennifer,

    First of all let me say that I L.O.V.E. Y.O.U.

    You are such a strong woman who has been thru much and I admire you with all my heart!

    Let me introduce my self, I am George, a 33 year old male from the Philippines who currently teaches at a maritime institution here in the Philippines. I have sailed in ocean going vessels for more than 9 years until I decided to stop for a while due to the feeling of creeping debilitation I am feeling with regards to my health.

    I’ve had so much issues when my brother died just before I graduated from College year 2001. But inspite of that I graduated cum laude and was the editor in chief of our school publication.

    I remembered myself as being vibrant, full of life and so happy.

    Until Celiac kicked in. Probably with the stress brought about by grieving for my brother.

    The symptoms began with just like you, an out of the blue really freaking, facial feeling losing, hair tingling and blitzing PANIC ATTACKS.

    I still remember it vividly that I can give you the date when it happened 11 years ago. JUNE 1.

    What followed after was a roller coaster in a hellish ride.

    I had GERD and so much stomach pain. I had sleepless nights and sometimes long hours of sleep without feeling rested.

    I have undergone three colonoscopy-endoscopy procedures and none yielded a clue. Once there was Gastritis but other than that none anymore. But still the PILLSLINGING way went against me.

    This went on for years, costing me a marriage because my wife couldn’t understand what I was going through.

    Just like you I faced a psychiatrist where that question was asked : “Do you think of killing yourself?”

    I was put on SRRI and sleeping pills for anxiety symtoms.

    Next was the constant sinus pain and infections. In fact there was pain even though there was no infection, I was treated with surgery to open my sinuses but it didn’t help one bit after.

    As for my chronic GERD and stomach upsets, all the doctors did were put me in PPI’s and other pills that didn’t truly work. I was in pain EVERYDAY. I couldn’t eat well.

    then I was diagnosed with HIATAL HERNIA. Obviously my relief was overwhelming. Finally an answer . But still years after the operation, my stomach upset seemed to GROW MORE virulent.

    Other than that, my feeling of malaise, weakness and over all fatigue seemed to be costing me too much.

    I felt that I WAS LITERALLY BEING RIPPED APART from all the aches and groans I had in my body.

    Until one day I started considering it might be with something I was eating.

    That’s when I tried cutting back on breads and other processed foods like pasta, ice cream and pizza that I loved so much.

    I noticed some relief. But I didn’t really paid it mind.

    I never imagined there was a disease such as this???

    So I went my merry way like that avoiding only these “bulky” foods that trigger these symptoms.

    Until my last shipboard experience last May-Oct 2010.

    There I decided to have a PPI regimen without consulting the doctor because of what I was feeling in my stomach, the constant pains even with drinking water.

    What I didn’t realize is probably that must have tipped the scales and broke the camel’s back. The further loss of stomach acid to gain nutrients must have totally starved me even after eating as much as I can.

    I went home after that IN A TOTAL WRECK! My insomnia was so much, I was jittery, clammy always and feeling about to die.

    So I decided to stay home for a while and teach as attributing it to just stress and pressure in my shipboard training may be the reason why I am like that.

    I regained a bit of strength while staying at home but when I began teaching and had episodes of late night drinking, thats when the symptoms returned and with a vengeance. I was also back on unhealthy fastfood diets and lack of fruits or vegetables.

    It went from bad to worst to sorely miserable.

    I was barely keeping it together. The neuropathy was debilitating I have lost my feelings in my extremities and feeling it must be my heart or an impending stroke.

    The fatigue was miserable. The bloating. The alternating diarrhea/constipation. The gasses.

    And thats when I accidentally cut off “bready” foods again. Because my mother was diagnosed with diabetes type 2 and i was thinking maybe I am also so I had my blood checked but alas, I wasn’t.

    But I did notice relief after slacking on bread.

    That’s when I come to thinking it might be the cause.

    So I researched my symptoms and associated that with BREAD.

    Thats when the word GLUTEN came into play.

    And the rest as they say is history.

    Beer, Ice Cream, Pies, MALT BREAKFAST DRINK (that I love so much)…

    All of these things I read, stuck in my mind and then horrifically avoided.

    I tell you, I cannot count anymore how many diagnosis the doctors has given me. Allergic Rhinitis. Sinusitis. GERD. Gastritis. TMJ. ASTHMA (Oh yeah, I also had bouts of these tough lack of breathing capacity that scared the pants off me).

    But now three weeks of as much as I can GLUTEN FREE diet, it is amazing!!! It is like I am living a new and wonderful LIFE… An amazing LIFE.

    Just the fact that there was a reduction of my pains and weakness, it was enough for me to begin to be SO HAPPY!

    But then something clicked further, it is what my mother used to tell me. That I was a very sickly child, asthmatic and had a host of diseases like diarrhea, stomach pain, even such tropical diseases as thypoid fever and cholera and lots of times I was sent to the hospital. Even bouts of Otitis Media.

    I pieced it all together with what kept me glued in the net for hours and then I know.

    I have not been diagnosed yet Ms Jennifer but I know I passed the GOLD STANDARD of all tests for Celiac which is this wonderful feeling that everythings not lost.

    This morning I had a whole GRAPEFRUIT for breakfast. A WHOLE GRAPEFRUIT.

    I couldn’t dare contemplate that when I was so sick. I really can’t.

    Just a slight piece of any citrus fruit or a drop of any juice is enough to send me SLITHERING IN PAIN prior. Perhaps brought by my stomach gurgling out acid laden vomit to discharge gluten (So i believed the hernia actually helped for a while there. Until the fundoplication.)

    I believe that is the final test. I KNOW I HAVE CELIAC. An undiagnosed condition for sooooooooooo long!

    But now, one whole GRAPEFRUIT and not one belly ache. Instead a feeling of warmth suffusing my belly for this VITAMIN C laden and oh so healthy food.

    I am cruising on new track now.

    But you see the problem is this, I couldn’t convince my EX WIFE who by the way is a MEDICAL NURSE in profession to please consider celiac for the HOST of illnesses affecting my son.

    You see he always get sick, had a lot of incidence with canker sores, lethargic, bouts of flu and sniffles and dry coughs always and rashes.

    and surprise, the favorite foods she feeds them? FAST FOOD MEALS! Bread, pasta, gravy and all those GLUTEN laden food.

    That is my dillema now. Unfortunately I am on my way to Japan for a scholarship program until Sept 11. I also am not aware yet WHERE I could get tested for this disease and so is my son.

    But I know, with the wealth of good feeling coming over me at the moment (that upon feeling this better I am even reduced to CRYING all the time. But of happiness), I could positively help my son so he won’t have to endure THE HELL I had gone through.

    It was only Iron discipline that got me through. That and hope that things will get better.

    Thank you Ms Jennifer. I didnt actually know you were the actress while I was checking your blog until I saw your picture hahaha.. So Im a bit starstruck here. But reading through your posts, seeing how you have become such a tireless and fighting advocate for this disease filled me with optimism about the beautiful spirit of humanity and COMPASSION and CARE and SYMPATHY and EMPATHY that flows through you.

    Unfortunately, many from the medical industry and even some of our family members or friends lack this trait. Attributing everything to JUST IN OUR MIND!!!!

    I used to envy friends and stars living seemingly glossy and happy and shiny lives in FACEBOOK or in news. I am not dreaming of fame anymore or money or power. Just an answer why I am feeling like a candle slowly dying. And to see and hear it from such an accomplished actress as you fills me with wonderful buoyant hope.

    I AM HEARING MY BODY NOW. It is telling me I am on the right track.

    Btw, just to let you know, I have caucasian blood in my mothers side as my grandfather is an American. Also, Asians esp us in the Philippines are more now into the PROCESSED and FASTFOOD diet too. There’s tons of JUNK being sold as food here. We have woefully abandoned the diets of our ancestors.

    Anyway Ms Jane, you have touched my heart and someday when all my dreams come into reality, like being a founder of a CELIAC AWARENESS campaign here in Philippines (I believe many are undiagnosed), maybe I can invite you to speak for us.

    But that’ll be years from now. For now, I am just adding my voice to the Accolades going your way for your campaign, using your time and effort for AWARENESS and HELP inspite of being a “STAR” where you could just be partying and going about if you know what I mean.

    When I get home in September I will really have my son tested for Celiac disease.

    So I am just wondering if through your contact you might get me information where I can have him tested here.

    That is all, beautiful soul, warrior and strong woman!!!

    Know that aside from your amazing acting and beauty and class, you have an awestruck humble fan here in the Philippines much more brightened by the way I see your journey, your fight and your battle now….

    thank you! Im gonna like you in FB too!

    Please continue to inspire us.

    Much LOVE!

  10. George Daniel Anos

    Dear Jennifer,

    First of all let me say that I L.O.V.E. Y.O.U.

    You are such a strong woman who has been thru much and I admire you with all my heart!

    Let me introduce my self, I am George, a 33 year old male from the Philippines who currently teaches at a maritime institution here in the Philippines. I have sailed in ocean going vessels for more than 9 years until I decided to stop for a while due to the feeling of creeping debilitation I am feeling with regards to my health.

    I’ve had so much issues when my brother died just before I graduated from College year 2001. But inspite of that I graduated cum laude and was the editor in chief of our school publication.

    I remembered myself as being vibrant, full of life and so happy.

    Until Celiac kicked in. Probably with the stress brought about by grieving for my brother.

    The symptoms began with just like you, an out of the blue really freaking, facial feeling losing, hair tingling and blitzing PANIC ATTACKS.

    I still remember it vividly that I can give you the date when it happened 11 years ago. JUNE 1.

    What followed after was a roller coaster in a hellish ride.

    I had GERD and so much stomach pain. I had sleepless nights and sometimes long hours of sleep without feeling rested.

    I have undergone three colonoscopy-endoscopy procedures and none yielded a clue. Once there was Gastritis but other than that none anymore. But still the PILLSLINGING way went against me.

    This went on for years, costing me a marriage because my wife couldn’t understand what I was going through.

    Just like you I faced a psychiatrist where that question was asked : “Do you think of killing yourself?”

    I was put on SRRI and sleeping pills for anxiety symtoms.

    Next was the constant sinus pain and infections. In fact there was pain even though there was no infection, I was treated with surgery to open my sinuses but it didn’t help one bit after.

    As for my chronic GERD and stomach upsets, all the doctors did were put me in PPI’s and other pills that didn’t truly work. I was in pain EVERYDAY. I couldn’t eat well.

    then I was diagnosed with HIATAL HERNIA. Obviously my relief was overwhelming. Finally an answer . But still years after the operation, my stomach upset seemed to GROW MORE virulent.

    Other than that, my feeling of malaise, weakness and over all fatigue seemed to be costing me too much.

    I felt that I WAS LITERALLY BEING RIPPED APART from all the aches and groans I had in my body.

    Until one day I started considering it might be with something I was eating.

    That’s when I tried cutting back on breads and other processed foods like pasta, ice cream and pizza that I loved so much.

    I noticed some relief. But I didn’t really paid it mind.

    I never imagined there was a disease such as this???

    So I went my merry way like that avoiding only these “bulky” foods that trigger these symptoms.

    Until my last shipboard experience last May-Oct 2010.

    There I decided to have a PPI regimen without consulting the doctor because of what I was feeling in my stomach, the constant pains even with drinking water.

    What I didn’t realize is probably that must have tipped the scales and broke the camel’s back. The further loss of stomach acid to gain nutrients must have totally starved me even after eating as much as I can.

    I went home after that IN A TOTAL WRECK! My insomnia was so much, I was jittery, clammy always and feeling about to die.

    So I decided to stay home for a while and teach as attributing it to just stress and pressure in my shipboard training may be the reason why I am like that.

    I regained a bit of strength while staying at home but when I began teaching and had episodes of late night drinking, thats when the symptoms returned and with a vengeance. I was also back on unhealthy fastfood diets and lack of fruits or vegetables.

    It went from bad to worst to sorely miserable.

    I was barely keeping it together. The neuropathy was debilitating I have lost my feelings in my extremities and feeling it must be my heart or an impending stroke.

    The fatigue was miserable. The bloating. The alternating diarrhea/constipation. The gasses.

    And thats when I accidentally cut off “bready” foods again. Because my mother was diagnosed with diabetes type 2 and i was thinking maybe I am also so I had my blood checked but alas, I wasn’t.

    But I did notice relief after slacking on bread.

    That’s when I come to thinking it might be the cause.

    So I researched my symptoms and associated that with BREAD.

    Thats when the word GLUTEN came into play.

    And the rest as they say is history.

    Beer, Ice Cream, Pies, MALT BREAKFAST DRINK (that I love so much)…

    All of these things I read, stuck in my mind and then horrifically avoided.

    I tell you, I cannot count anymore how many diagnosis the doctors has given me. Allergic Rhinitis. Sinusitis. GERD. Gastritis. TMJ. ASTHMA (Oh yeah, I also had bouts of these tough lack of breathing capacity that scared the pants off me).

    But now three weeks of as much as I can GLUTEN FREE diet, it is amazing!!! It is like I am living a new and wonderful LIFE… An amazing LIFE.

    Just the fact that there was a reduction of my pains and weakness, it was enough for me to begin to be SO HAPPY!

    But then something clicked further, it is what my mother used to tell me. That I was a very sickly child, asthmatic and had a host of diseases like diarrhea, stomach pain, even such tropical diseases as thypoid fever and cholera and lots of times I was sent to the hospital. Even bouts of Otitis Media.

    I pieced it all together with what kept me glued in the net for hours and then I know.

    I have not been diagnosed yet Ms Jennifer but I know I passed the GOLD STANDARD of all tests for Celiac which is this wonderful feeling that everythings not lost.

    This morning I had a whole GRAPEFRUIT for breakfast. A WHOLE GRAPEFRUIT.

    I couldn’t dare contemplate that when I was so sick. I really can’t.

    Just a slight piece of any citrus fruit or a drop of any juice is enough to send me SLITHERING IN PAIN prior. Perhaps brought by my stomach gurgling out acid laden vomit to discharge gluten (So i believed the hernia actually helped for a while there. Until the fundoplication.)

    I believe that is the final test. I KNOW I HAVE CELIAC. An undiagnosed condition for sooooooooooo long!

    But now, one whole GRAPEFRUIT and not one belly ache. Instead a feeling of warmth suffusing my belly for this VITAMIN C laden and oh so healthy food.

    I am cruising on new track now.

    But you see the problem is this, I couldn’t convince my EX WIFE who by the way is a MEDICAL NURSE in profession to please consider celiac for the HOST of illnesses affecting my son.

    You see he always get sick, had a lot of incidence with canker sores, lethargic, bouts of flu and sniffles and dry coughs always and rashes.

    and surprise, the favorite foods she feeds them? FAST FOOD MEALS! Bread, pasta, gravy and all those GLUTEN laden food.

    That is my dillema now. Unfortunately I am on my way to Japan for a scholarship program until Sept 11. I also am not aware yet WHERE I could get tested for this disease and so is my son.

    But I know, with the wealth of good feeling coming over me at the moment (that upon feeling this better I am even reduced to CRYING all the time. But of happiness), I could positively help my son so he won’t have to endure THE HELL I had gone through.

    It was only Iron discipline that got me through. That and hope that things will get better.

    Thank you Ms Jane. I didnt actually know you were the actress while I was checking your blog until I saw your picture hahaha.. So Im a bit starstruck here. But reading through your posts, seeing how you have become such a tireless and fighting advocate for this disease filled me with optimism about the beautiful spirit of humanity and COMPASSION and CARE and SYMPATHY and EMPATHY that flows through you.

    Unfortunately, many from the medical industry and even some of our family members or friends lack this trait. Attributing everything to JUST IN OUR MIND!!!!

    I used to envy friends and stars living seemingly glossy and happy and shiny lives in FACEBOOK or in news. I am not dreaming of fame anymore or money or power. Just an answer why I am feeling like a candle slowly dying. And to see and hear it from such an accomplished writer as you fills me with wonderful buoyant hope.

    I AM HEARING MY BODY NOW. It is telling me I am on the right track.

    Btw, just to let you know, I have caucasian blood in my mothers side as my grandfather is an American. Also, Asians esp us in the Philippines are more now into the PROCESSED and FASTFOOD diet too. There’s tons of JUNK being sold as food here. We have woefully abandoned the diets of our ancestors.

    Anyway Ms Jane, you have touched my heart and someday when all my dreams come into reality, like being a founder of a CELIAC AWARENESS campaign here in Philippines (I believe many are undiagnosed), maybe I can invite you to speak for us.

    But that’ll be years from now. For now, I am just adding my voice to the Accolades going your way for your campaign, using your time and effort for AWARENESS and HELP inspite of being a “STAR” where you could just be partying and going about if you know what I mean.

    When I get home in September I will really have my son tested for Celiac disease.

    So I am just wondering if through your contact you might get me information where I can have him tested here.

    That is all, beautiful soul, warrior and strong woman!!!

    Ever move forward!

  11. Sharon

    As you noted, Laura, I know for sure Whole Foods 365 now has (at least in my store in MA) a carrageenan free almond milk. I swear I also saw a carrageenan free soy milk there last week (an elder man pointed the soy and almond ones out to me), and I corresponded with WFs to thank them for removing it from these two products; however online all their 365 soy milks appear to have it in it…and only certain versions of the almond milk are carrageenan free at this point- so continue to read those labels! I apologize for the misinformation about a WFs CF-carrageenan free coconut milk…though that may be in the works.

    SoHo and many others coconut milks have carrageenan in their boxed products. The ethnic food line ones like Goya and others in the cans are often carrageenan free – though I could not get at the ingredients on to recheck this- a common issue with lots of companies as they may display the nutritional breakdown but not show the actual ingredients. I think Thai coconut milk and a few other canned ones are also carrageenan free but have no emulsifier whatsoever so you need to give them a good shake before using even after transferring to another storage container – as there will be separation.

    Whole Foods noted in their mail to me that they are working to get the carrageenan out of their dairy and non-dairy products, but it is not an easy task. I specifically asked about a fat-free half-and-half, heavy/whipping creams-liquid and canned, and they noted getting the consistency of these right without using carrageenan has been an issue for them. I told the customer service contact I don’t mind shaking to avoid the carrageenan!

  12. Chris Perdicaris

    Attention: Jennifer Esposito and all members.

    Is there an actual test out there exclusively for the detection of celiac disease? Also, have you (Jennifer Esposito) or any member on this site ever been tested for the stomach bacteria H-pylori? H-Pylori has the same symptoms as celiac disease as well as many other digestive disorders–especially stomach inflamation and acute pain. The test is performed by taking a breath sample. Apparently, it is a very common cause of digestive difficulties. Does anybody have experience or knowledge about H-Pylori? It is cured with a one week regiment of very powerful antibiotics. Please help and thank you.

  13. Lee

    H. pylori can be serious and one of my co-workers had such stomach pains after coming back from a tropical honeymoon. She didn’t know what it was until her physician tested her for H. pylori and she received treatment to get rid of the infection. By the way, H. pylori is known to be the infection that causes peptic ulcers. Hope this helps!

  14. Sherry Brazee

    Saw Jennifer on Dr Oz last night. Wanted to try the Scone recipe. I am new at this Gluten free and dairy free diet. I am also allergic to beef and tomatoes. I will be reading this blog often. Any info you can send will be awesome. Reading Living Gluten Free for Dummies .
    Sherry

  15. Carrie

    Yikes. I have just entered this life as my two children have celiac, diagnosed six months ago. It can be so frustrating to find foods, especially for one very picky eater. This was a great post as it was on my mind to what exactly carrageenan was as I read labels. Thanks.

  16. JiminPa

    Scary indeed! Especially since I’ve been having some issues lately with digestion. For the past three weeks I’ve been using the box blend of Almond/Coconut milk purchased off the shelf of my local health food store. I use it in my coffee in the morning and also about 4 times a week to blend a fruit smoothie with it as my breakfast. And for the last 2 weeks have had sever constipation causing me to wonder what was causing this and what I was consuming to bind me up so much. Thanks for the Heads Up! Sure enough right there on the list of Ingredients on the box is Carrageenan-and most likely the culprit of my discomfort. Solution…Make our own Almond Milk!

    Almond Milk
    1 cup soaked almonds
    4 cups water
    Blend in a high speed blender for several minutes
    Strain thru an almond milk bag or a paint strainer bag (I buy these for about $2/2 at home depot)

    If you’d like to sweeten it a little add sweetener of choice. I like Agave and some vanilla with a pinch of sea salt…blend. Store in fridge it will stay fresh for three days. Will separate but just shake before serving, if you want it creamier use less water.

    I soak about four cups of almonds overnight…drain in the morning. Rinse well and recover w/fresh water. Store, covered in water in fridge for a week, change water every two days or so. Almonds have a natural growth inhibitor which does not digest well, soaking removes it, makes the almonds easier for the body to break down and use.
    That’s why they stay the way they are in the bag and don’t sprout…once “activated” they become a living food.

  17. Sharon

    Any good medical website has info for both celiac testing -see UChicagoCeliac Center or Beth Israel Boston or Columbia Univ Celiac Center and as far as H. Pylori – the general GI depts may have info else look at say Mayo Clinic or Cleveland Clinic – or even Web MD. There is a blood test but now a breath test, stool test, etc. Hpylori is another thing that more widespread testing should be done when someone presents with GI or GERD issues – however if the symptoms go beyond gastrointestinal to hair loss or joint pain or absorption issues of iron, calcium, Vit D, and many other issues – it is less likely to be H.Pylori.

    Find a good doctor who will do some preliminary tests then refer you to a good GI doc. There can be many reasons for your symptoms. It is never too soon to start eating better and organic – eliminating food products with additives. There is this pro and con thing about whether one should do a test run of eliminating gluten as this can prevent a proper diagnosis of celiac disease. Good luck!

  18. Jann

    I contacted Blue Diamond manufacturer of the Almond Breeze non-dairy milks. I asked about their using ‘carrageenan’ in their products. I was pleasantly surprised to get a response within a few minutes of my submitting my concern.

    They seem to make a distinction that they use FOOD GRADE carrageenan vs INDUSTRIAL GRADE. None of the studies that I briefed seemed to indicate a difference when they were talking about the inflammation that it causes. Still confused… but have decided to NOT ingest it.

    Thank you for contacting Blue Diamond Growers regarding your issue with your recent purchase.

    Carrageenan is a natural polysaccharide extracted from seaweed. It is a highly refined form of Carrageenan approved for use in foods as an emulsifier and thickener. It contains no MSG, nor is MSG formed during the process of making Almond Breeze.

    The Carrageenan that is used in the Almond Breeze formula is not to be confused with the degraded version that is chemically different and used solely for industrial applications.

    The Carrageenan is used to stabilize our Almond Breeze product. There is less than 0.2% by weight in Almond Breeze.

    Your feedback has allowed us to re-evaluate our process and systems. This will insure that you continue to receive a high level of quality products you have grown accustomed to with the Blue Diamond brand.

    Please accept our sincere apology for any inconvenience you experienced as a result of this issue. We welcome the opportunity to address your concerns and resolve them to your satisfaction.

    Thank you again for your loyalty to Blue Diamond and we look forward to continuous service in the future!

    Sincerely,

    Pam Schiller
    Assistant Consumer Advocate
    BLUE DIAMOND GROWERS
    (800) 987-2329; toll free
    e-mail: customerservice@bdgrowers.com

    1. Sharon

      Still slightly symptomatic on GF diet after a year – eliminating gluten, MSG (and its ammonium cousin and its related seaweed – as well as the carrageenan made from it to find that many of the colgate toothpastes also use it. Eliminated this and my GI and joitn symptoms have totally resolved.

      Again related to Almond Breeze response they are all using food grade carrageenan – they have to…as noted above Whole Foods has started to eliminate it from their 365 brand dairy and non-dairy milks and creams.

  19. Jann

    RE: Eliminating ‘carrageenan’

    I monitor antibody levels closely as a measurable indicators for ‘systemic inflammation’. After 8+ weeks of NOT eating products with carrageenan my recent blood testing indicated that my antibody levels dropped considerably.

  20. Jann

    RE: Carrageenan is in ‘Heavy Whipping Cream’ & ‘Half-n-Half’.

    OK — so I don’t normally drink dairy products but have recently started drinking coffee again and have been experimenting with the various almond milks, and my home-made coconut milk as a creamer. Wasn’t the same… so I decided to buy some ‘Half-n-Half’ and some “Heavy Whipping Cream” — just happened to read the labels and they add ‘carrageenan’. Couldn’t believe it! I thought they only used it in the wanna-be milks.

    I have since found a local source for RAW milk/cream — that’s what I’ll be buying from now on. [BTW: I've read that for those that are lactose intolerant, often RAW milk is OK... haven't tried it myself... other than RAW heavy cream for my coffee which is NOT like drinking a glass of milk.]

  21. Debbie

    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

  22. Angela

    Hi,
    Im new top your site and Ive been sitting for hours looking at it. Love it.
    Just found out they put the carragenan in applefarms cold cuts as well which are supposeably organic.

  23. Sharon

    Have not posted for awhile, but I hope Jennifer and all who have read and posted to this blog note the new carrageenan out there – in some gluten-free products no less – alginate – in the form of sodium/calcium/potassium alginate or algenic acid or other forms – it is made from brown seaweed instead of red seaweed but I react as if I had eaten gluten as I do with MSG and carrageenan. Have contacted about alginate in their products Glutino (in their new bagels and bagel chips) and UDIs (in their tortilla wraps, other products?) and will contact Boulder Brands the parent company about this that just bought Evol that has a GF line of foods.

  24. Karen L.

    Hi fellow Celiacs! I was diagnosed with Celiac Disease in October 2012. I went to my Endocronologist for a routine check-up on my thyroid. She was asking a bunch of health questions. She looked at my fingernails too. She said she wanted to do a special test. At that time, I didn’t remember what she mentioned, but she ended up calling me with test results and proceeded to tell me that I tested positive for Celiac Disease. I said, “What?” She recommended to see a GI doc. Had an endoscopy done and proved positive that I have it. I’ve been GF since then. It’s very frustrating to figure out what to eat and what to buy….UGH! I’ve gotten used to it by now. It takes me forever to shop at the grocery store. I find that the baked goods tend to be too expensive. I totally MISS eating those yummy tasteful foods that I used to eat in my former diet. I don’t look forward to going out to eat. Very frustrating!! If a server doesn’t know too much about it, I don’t feel comfortable eating there. So I choose restaurants that have GF menus. You can’t really trust them at all. I wish that there restaurants that made only GF entrees, and that are cooked on GF surfaces. I don’t even like my own family using my kitchen to make food. I’m the only one that I trust cooking. I’ve been looking for websites that have other people who have this horrible disease. I’ve been drinking Almond Breeze almond milk. Don’t know what products to trust anymore. I hope more research is done to figure out how to manage it better.

  25. Sue

    I love your fight Jennifer! Please accept that I admire what you are doing, but….could you please correct your diagnoses tag-line? It should either read ….”in long awaited diagnoses” (plural form) OR “a long awaited diagnosis”. Like gluten cross-contamination, sometimes the small things matter.
    You are wonderful!

  26. Kristine ODonnell

    This just goes to show how big companies rule in politics! From pesticide all over even if it’s organic if the soil has been sprayed then it’s inside the vines, look at potatoes children’s urine was tested and found high levels of pesticides! When I feel better and get energy I will find a way to fight! Until then I’m tweeted and posting on Facebook! I have to calm my nerves! This upsets me so much! I’m fighting for my
    I’ve and already feel toxic from all these medications I’m on chemo, prednisone, a medication for what I’m told is for nerve endings pain! The food I eat is hurting me and our government knows! Pockets are getting lined :( this makes me angry, sad, scared

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