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.

21 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. Ruth Vish says:

    I am new here. I am not sure if I am posting this in the correct place.
    After MRT testing through LEAP, I found that I could control my IBS and acne by avoiding benzoates. Now I need tooth extraction and bone grafting to accomodate implants for the lower front teeth. I am concerned that the synthetic graft material will contain benzoates. Does anyone have experience with this?

    • 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.

    • Ruth says:

      My local bakery uses soy oil in their bagels.

  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. 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.

  7. 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.

  8. Maddy says:

    Is the place to ask a question?

  9. 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

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 )

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s