Welcome!

A benzoate & cinnamate (cinnamon) free diet is often recommended as a way of controlling a rare condition called Orofacial Granulomatosis, or OFG for short.  This condition can also be called oral Crohn’s – indeed, it is a form of Crohn’s disease, however unlike most Crohn’s sufferers, whose symptoms affect a large portion of their gut, OFG symptoms are found on the face, lips, mouth and occasionally the throat.  Sometimes OFG and gut-Crohn’s go hand in hand, and many people have both.

 

Either way, the standard treatment is to follow a strict diet, eliminating several dozen common foodstuffs which are natural sources of cinnamates or benzoates, or which have added artificial benzoate preservatives in them.  This diet can be complex and although you can have a well balanced food intake it is not really something to follow along with any other elimination diets unless you have been advised to do so by a medical professional.

 

This page is devoted to the creation and sharing of recipes and food ideas for people who follow this diet.  The same recipes and ideas can also be found on facebook at http://www.facebook.com/BenzoateIntoleranceSupport.

 

All that remains is for me to remind readers that I am NOT an expert, nor am I a dietician, nor am I a chef, nor am I a medic of any sort.  I am simply a sufferer who can hold his own in the kitchen.  Any suggestions I give are purely from the point of view of a sufferer and enthusiastic home cook.  They are NOT medical advice, nor are they scientific advice.

 

I can, and do regularly, get things wrong.  I make mistakes.  Sometimes I try a new food thinking it will be safe and my OFG reacts so badly I look like I’m doing a bad Mick Jagger impression. So, if you try something from my website and it makes you react, please tell me.  If you see an ingredient in a recipe that you normally avoid, don’t use that recipe.

 

This site is for everyone who uses it and I hope that everyone will contribute in turn and help to improve the information, the meals and the range of food ideas.

 

Thank you.

 

UPDATE: MARCH 2017

I have just watched Dr Giles Yeo’s Horizon documentary on the fad of clean eating and with the dangers he raised in mind, I want to explain a couple of things for my readers and followers.

A benzoate and cinnamon/cinnamate free diet is not something a healthy person can just follow in order to feel better. It is a recognised treatment, medically prescribed, to help sufferers of a medically diagnosed condition.

People should not follow this diet simply “on a whim” or “to feel more healthy”. It won’t work like that, and that is not what it is for. If you have any type of oral crohns or related conditions or a diagnosed allergy to these chemicals, it can often (but won’t always) help. If you have none of these, this diet won’t make you miraculously healthier.  If you think you need to be on this diet, I strongly advocate you get medical advice from a dietitian, a dentist or oral medicine specialist, an allergy specialist or a gastroenterologist first.

Advertisements

58 Responses to Welcome!

  1. Devon Hulbert says:

    I am in the USA and we are markedly backwards in artificial and benzoate use
    I am severely allergic to sodium benzoate found in drinks and in so many things
    No one seems to know about this problem at least here
    I’m also Salicylate and Histamine Sensitive and suffer from migraines
    I’m trying to exclude natural benzoic acid from my diet but finding a good list of levels
    Impossible
    For example Kale a dark leafy vegetable Is it like spinach ? Or romaine? How dark is dark?
    I stumbled across your Facebook page and am
    Desperately interested

    • Tiger says:

      Hi and welcome to my page. Sorry to hear you are having so much trouble. I find a bit of botany sometimes helps when determining safety of foods. For example kale is a brassica and most other brassicas are safe, unless you react to sulphur compounds. Withh regard to romaine, the only food I know with that name is a type of red lettuce which is safe for most people also. You will find that cinnamon compounds will likely make you react too. Also watch for bleached wheat flour – in europe bleaching of flour is banned but benzoates are frequently used as bleaching agents in the USA. Hope this is helpful, please just ask if there is anything else I can do.

      • Devon Hulbert says:

        Thank you so much
        Yes I cannot even BREATHE cinnamon without trouble I went to an acupuncturist who used cinnamon oil after I told him I was intolerant and I haft to take a Benadryl halfway through it because I couldn’t breathe !
        Because of the migraines I’m gluten free and try to use organic as much as I can afford!
        Really appreciate the help
        Devon

  2. Tiger says:

    Hi Ruth and welcome to Benzoate Intolerance Support. I am afraid I have no experience of dental work like this. Perhaps ask the surgeon involved to help you?

  3. Lisa Falcon says:

    Hello! My 13 year old suffers from Crohns Disease and was just diagnosed with OFG. Your sight is very very helpful so thank you! I am feeling very overwhelmed.
    I have questions about silly things like…..can he eat a bagel? Trying to find snacks that a 13 year old will eat. He can’t afford to lose more weight. I read through your snacks options. Can he eat deli meat? What can I send for lunch at school for him…..any kind of bread or do I have to make it? Do I just go to the store and read every label?

    • Tiger says:

      hi and welcome to my site. Regarding bagels and deli meat, you need to read the ingredients on the packets, or ask for ingredients if they don’t come in packets. Look at the snacks section for ideas for things to nibble. Home made bread is safest. How about roast chicken sandwiches made with home made bread, and vanilla cupcakes for a desert? I hope my site helps – have a good look through and ask any questions you have.

  4. Jason Klinger says:

    Hello- I cant figure out whats triggering my histamine issues. right now the only vegetables i can tolerate are green beans, lettuce and crucifers (even though they bloat me). Every other vegetable, herb and spice causes an inflammatory reaction. Also i can tolerate olive oil but olives ir anything bitter will flare upo my tongue. on a recent urine organic test my benzoate was a bit elevated. wondering if Benozoates are my primary trigger. are there any ways to correct a benzoate intolerance?

    • Tiger says:

      hello and thank you for visiting my page. Unfortunately, in my experience, benzoate intolerance can be eased but not fully erased. The only thing that seems to have worked for people is a strict exclusion diet for around 3 months, then a slow reintroduction of other foods. If its your histamine levels that are a problem, look up a low histamine diet as well as or instead of the standard cinnamon and benzoate free diet as this page describes. Because of the potential for a lack of dietary nutrients if you try and combine two exclusion diets, you really do need medical supervision. I have been on a cinnamon and benzoate-free diet, with only minor additions, for nearly 5 years. Whenever I try and eat “normally” I get a nasty recurrence of oral crohns (OFG) symptoms. It may be that your diet might have to remain restricted in order to control symptoms. But a doctor or medical person would be the person to ask about a long term restricted diet. Sorry I couldn’t be more help.

  5. sophi says:

    Hi I was wondering if anyone can recommend a benzoate free sun screen for my daughter age 7.
    Thanks

    • Tiger says:

      Benzoate and cinnamon-free sunscreens can be very hard to come by. This is because the active ingredients that make an ordinary cream into a sun cream tend to be benzoate or cinnamon compounds.
      The safest option is to look in health food stores or natural health stores for a mineral-based sunscreen. This does NOT rub in or get absorbed but creates a visible layer on the skin. Most store assistants will be able to direct you to the range they carry.
      The alternative is to look for a salicylate-based subscreen. Salicylates are related chemically to asprin but are sometimes safe for us, depending on personal sensivity. This is what I do, using Ambre Solaire Sensitive Advanced 50+ sunscreen. I cannot tolerate salicylates internally but can use this cream as long as I wear gloves to apply it and avoid my face. (For my face, I just keep a good hat on).
      Hope this helps.

    • Rose says:

      Here in the US, Badger has a good one.

  6. Anna says:

    I am trying to find sun cream for my daughter too. Not found anything yet. Any ideas would be welcome

  7. Christine says:

    Hi all,
    An allergist suspects I have CG. Currently my lips are swollen with a raised ridge on the inside of the upper and lower. I am to have blood work and a lip biopsy soon.

  8. Pippa says:

    Hello,

    I suspect I too have this intolerance. I suffer from mouth swelling. I am in the US and it seems as though it is not as widely recognized here. Which is not suprising. I wonder if any of you have experience with asparagus, kale, chard or bok choi? Do they fall in the dark green group?

    Any and all input is greatly appreciated.

    Thank You!
    Pippa

    • Tiger says:

      these four vegetables are okay for me, and for most people. The specific leaves to be wary of are rocket and spinach and related plants. “Dark green” is a convenient description when buying ready made salads where you don’t know the exact contents.

  9. Maddy says:

    Is the place to ask a question?

  10. Claudia says:

    Just to make things even worse, I am also intolerant to Salicylates and Parabens which are also derivatives of Benzoic Acid just as Sodium Benzoate is.

    • Devon Hulbert says:

      Yes myself as well
      Salicylates and benzoate in the same chemical type family
      Often parable says cross react and be very careful of MSG
      Or gelatin
      Blessings

  11. Trish says:

    I have been patched tested and I have been told I am allergic to benzoic acid, propionic acid, E233 and also hydrocortisone.
    Is benzoic acid the same as sodium benzoate’s?

    Thanks

    • Tiger says:

      hi Trish and welcome to my website. How good is your chemistry? Sodium benzoate is a compound made from and chemically related to benzoic acid (its technically known as a salt of the acid). So chemically it isn’t the same. However, with regard to allergies and intolerances, most people who react to one usually react to both, so its safer to treat them as the same thing and avoid both from a dietary point of view.

  12. Trish says:

    Thanks for the reply. Very helpful!!

    Does anyone know of any makeup products, showegels, shampoos etc without benzoic acid in it? Im really struggling to find something.

    Thanks again

  13. Rose says:

    What about raisins?

    • Tiger says:

      As far as I know almost everyone with OFG/oral crohns reacts to some degree to raisins and similar dried fruits. You might be one of the lucky few and be able to eat them but I for one react terribly to them. If you decide to experiment, good luck, and please let me know how it goes!

      • Rose says:

        I did eat 4 or 5 yesterday and had problems afterwards. Now I know what it was. I was trying to figure out if the bread flour was the issue. Now I know.

        I really should not be so careless trying items I have not had in a long time. I guess the components of the raisins are concentrated. How about other dried fruit? I have not had any in a long time. Do I remember reading here somewhere that you can tolerate a bit of dried pineapple?

      • Tiger says:

        The dried/preserved fruits I can tolerate are:
        pineapple
        apple
        pear
        crystalised ginger (just a small amount – one or two chunks)
        candied angelica
        candied citrus peel
        Some people cannot tolerate apple, ginger or citrus peel at all.
        Others can tolerate dried mango.
        A few can cope with currants or prunes (dried plums) but this is rarer.
        Hope this helps.

  14. Emma says:

    Hi, I just found your page! so nice to see theres lots of people out there with same complaints!! my daughter now 10 has suffered for the last 5 years. we had no idea where to start, the doctors had no idea where to start then she was recommended the diet via a dentist. I must be honest I thought it would be a con but amazingly her symptoms cleared up on starting the diet and we have been able to introduce certain foods back in without any flare ups. we now manage her diet usually successfully and she is so much better now.
    on particularly bad flare ups all she would eat would be cucumber – she swears it helps sooth the ulcers and im almost convinced they clear up quicker after she eats some. has anybody else found this???
    also do you have any recommendations for natural ways to sooth, we have a prescription for some soluble steroid tablets to use as a rinse but im reluctant to use them on her.
    many thanks Emma

    • Tiger says:

      I have never heard of the cucumber trick, I must remember that!
      My main way of easing ulcers is to drink lots of plain water and rinse my mouth with cold water regularly. That seems to help me more than any medications I have ever tried.

      • Emma says:

        yes we make sure she has water with meals and rinses regularly too. ok will stick with that. thanks x

      • Lana Trana says:

        I find cucumbers — Persian organic — from Trader Joe’s to be very agreeable. I don’t have OFG (don’t think I do) but I surely react to benzoates with SEVERE eye irritation. When I include those cukes my body seems to say, “Thank you!”

  15. Rose says:

    I think beetroot greens are not good for me. How are they for
    most benzoate avoiders?

    • Tiger says:

      I can eat them without problems. Not heard of others reacting. Have you tried chard? It is same family as beetroot. If you react to chard then all beetroot leaves are likely to be a reactor too. If not, then it might be a specific colour you don’t tolerate?

      • Rose says:

        I havecto isolate the beetroot. Some squash may have snuck in to my diet via homemade vegetable stock. TY Tiger.

  16. Tess says:

    Hi, I have recently been diagnosed with OFG after having issues for the past three years. I’m coping ok with the food side of things but it’s the make up/toiletries side I’m really stuggling with. Has anyone got any suggestions of UK brands or other brands I could try?

    Thank you,
    Tess

    • Tiger says:

      Cannot help with make up but with regard to toiletries, look at Baby ranges in Tescos and Boots, or unscented hard bar soap. Look at hard stick deoderants rather than sprays or roll ons. Benzoates will be used in liquids but not solids, which might help in guiding you as to which packets to try reading. Avoid musky or spicy scents so as to keep hexyl cinnamal at bay. If your eyesight isn’t totally perfect take a magnifying glass to read product ingredients with. Hope this helps.

      • Emma says:

        i have used products from Organic People before. they do organic, sls, benzoate free toiletries and makeup. I have used the baby product range on my kids when they were little and still buy the toothpaste for my benzoate sensitive daughter every now and then, I’ve tried finding her a facewash in every supermarket without benzo….in the ingredients list and its impossible!
        organic people aren’t cheap but might be a starting point? x

    • Tess says:

      Thank you, I tried both your suggestions and got some toiletries from both tesco and organic people, I am still looking for a face wash though, it’s definitely very difficult. I even asked my doctor and dietician at Guys for any suggestions and they couldn’t think of anything straight away but they are going to come back to me.

  17. Trish says:

    Hi can anyone recommend a sunscreen preferably spf50?

  18. Tiger says:

    Try Ambre Solaire. Their 2017 edition baby sun block was safe for me. Make sure you read the ingredients though as formulations frequently change.

    • Rose says:

      Is this it? Garnier Ambre Solaire Baby In The Shade SPF 50 50ml.

      Not sure, because I see BENZOATE in the the ingredients: Aqua/water, glycerin, C12-15, Akyl BENZOATE, Caprylic Triglyceride, Ethylhexyl salicy-Late, Bis_-Ethylhexyloxyphenol triazine, styrene/Acrylates Copolymer, Dimethicone, zea Mays Starch/ Corn Starch, Propylene |Glycol, Synthetic Wax, Diethylhexyl Butimido Triazone, Potassium Cetyl Phoshate, Tocopherol, Hydroxypropyl, Methycellulose, Stearic Acid, Phenoxyethanol, PEG-100 Stearate, PEG-8 Laurate, Triethanolamine Palmitic Acid, Ammonium Poly-Acryloyl Dimethyl Taurate, Caprylyl Glycol, Disodium EDTA, Aluminuim Hydroxide, Glyceryl Stearate.

      Found the ingredients here:
      http://www.expresschemist.co.uk/garnier-ambre-solaire-baby-in-the-shade-spf-50-50-ml.html#.WnZXAqinG70

  19. Tiger says:

    no, that one won’t be safe. The one I used was salycylate based and did not have benzoates. So sorry! They may have changed the formulation.

  20. Rose says:

    Or I found older information on the http://www.expresschemist.co.uk site.
    I could not find the ingredients on the Garnier Ambre Solaire site.

  21. Trish says:

    thank you for your help

  22. Rose says:

    Pat, in the US try Signature Minerals makeup, except the lipstick and mascara. For shampoo I am going to try out Vanicream Free and clear which is easily available at Walgreen’s and other stores. they also make creams. Check the ingredients. I use pure almond oil for my face. make sure it does not contain tocopherals as they are usually derived from soy.

  23. Charlotte says:

    Hi I am new to this diet as my lb has been diagnosed with crohns, we have been told to start the cinnamon and benzoate free diet as much as we can until we see the dietician. I have found so much info from this site as well as others but one thing I’m struggeling with is bread? Can I buy a bread from the supermarket?

    Also I’m thinking of pack ups for school, chicken is a good shout for us but he likes ham.. I’m presuming we cannot have packed ham? I haven’t been to the supermarket yet as tbh I’m quite worried of where to start so hoping to find as much info as ossicle before I venture there. Obviously I know I’ll still have to check packaging but thought I would try eat a heads up before I go in.
    Any info would be great.
    Thanks in advance

    • Tiger says:

      hi, my advice would be not to over complicate things. Some breads are safe – check Tesco multiseeded bread and some of their Finest breads, I think one or two are soya-free.
      And ham is safe as long as he does not have an additional sensivity to nitrates. Just make sure the ham you buy doesn’t contain spices.
      My suggestion would be to give yourself twice as long for your first supermarket shop, take your time, read the ingredients on *everything*, avoid deli counter products or similar and go for pre packaged stuff, and unless your eyesight is perfect, take a magnifying glass to read the small print!

      • Charlotte says:

        Thank you. I did find a fresh baked bread from Aldi today which didn’t have any of the avoid ingredients in and also said no artificial colours, flavourings or preservatives? This was just a white loaf..not sure if this would be ok?
        I’ve just bought fresh meats veg etc to go on with until we see the dietician and also a few snacks. I didn’t buy ham but thanks for the advice as I’ll go back and get some. I did find packaging ham that said preservatives:calcium benzoate .. so I avoided?

        Thank you for advice it is much appreciated.

  24. junie2 says:

    Where can I get a list of suitable cosmetics and skin care please
    I am in the Uk
    Many thanks
    Junie

    • Tiger says:

      unfortunately such a list does not exist, for the simple reason that manufacturers constantly alter product formulations.
      All I can suggest is a couple of hours, a good branch of superdrug or Boots, and a magnifying glass to read the product labels.
      Sorry I couldn’t be of more help

  25. junie2 says:

    Thanks so much
    Junie

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s