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Orofacial granulomatosis - Crohns disease

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Emmsj
Emmsj

Hi I have just been diagnosed with orofacial granulomatosis OFG -v uncommon auto immune disease which is dietary related & have been placed on a cinnamon & benzoate free diet which I'm really struggling with. I am having further allergy tests soon & a colonoscopy to see whether I have underlying crohns disease. I was wondering if anybody has this condition that does have or not have crohns? Basically my whole face is swollen, lips & cheeks especially but the diet is definately helping although it just feels my face doesn't belong to me & I have pins & needle feeling all the time in my face :-( Be great to talk to someone who knows how I'm feeling! Thanks Emma :-)

3 likes, 112 replies

112 Replies

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  • Leo123
    Leo123 Emmsj

    Posted

    Hi Emma,

    Many people with OFG, including myself follow an elimination diet of Cinnamon and Benzoates.

    My 'Orofacial granulomatosis' cleared after I found that there was 'Cinnamal' in my toothpaste.

    (Cinnamal is a flavouring derived from cinnamon.)

    The toothpaste I was using was "Oral-B, Pro-Expert, Clean Mint." 

    I changed my toothpaste to another brand which does not contain Cinnamon or Cinnamal and my swelling, cracking and sore lips cleared within a few weeks.

    I would advise all sufferers of OFG to check the ingedients in their toothpaste.

    Regards,

    Leo123

  • Mylisa
    Mylisa Emmsj

    Posted

    My son has it.  His face was swollen for months before we knew what it was.  He started remicade and his inflammation markers are going down.  He also takes methotrexate to prevent antibody build up.  I hate these drugs, but right now it is working.   However -  his face swelling stopped with his liquid diet that he maintained for 3 months.  
    • JoannaG
      JoannaG Mylisa

      Posted

      Hi Mylisa!

      So, does your son just have OFG or does he also have gut crohn's?  

      Also, did he start with the liquid diet for 3 months and then after that start taking Remicade and Methotrexate?  How does he do on those meds? Do they make him sick?

      After doing the liquid diet for 3 months, did you then just slowly introduce new foods?

      Sorry for all the questions but I was diagnosed this year with OFG. Finally got the diagnosis and now Noone here in Missouri knows how to treat me. It's pretty miserable as you know and I just want to feel better, and not looking so scarey would be nice. Any advice you have would be great. So sorry to hear your son has this. I'm 43 years old, it makes me sad to hear of the kiddos that have it. 

  • arran19
    arran19 Emmsj

    Posted

    Hi all,

    I was diagnosed 5 years ago and have come to learn what works for me.  Yes, the highly restrictive diet works...but it's impossible to stick to and life is for living, especially for anyone with a sweet tooth like me.  I'll share some of my tips...

    1. chocolate and wine are my worst triggers. The lindor white truffle balls are OK though and i can eat a fair amount of those without too much problem. They are my saviour. Green and Blacks white chocolate (mentioned by someone below) is not ok for me, nor is any other white chocolate so far...although white chocolate is definitely better than normal. Dark is the worst, so I've put it down to cocoa content. My hunt for ok white chocolate is ongoing!

    2. I do try to avoid benzoates and sorbates. Anything listing preservatives, I'll try to avoid. E200s I avoid. 

    3. Fizzy drinks. Diet coke is the only one with no benzoates/sorbates, so this is ok for me.

    4. Diluting juice. Most of the UK ones have benzoates/sorbates so I avoid them all.  Flavoured sparkling water also has these, so also avoided.

    5. Tomatoes. Not sure what it is but these are triggered for me, along with anything tomato based - so I tend to avoid.

    6. Strawberries. Again, seem to be triggers.

    7. Citrus, especially pineapple, are triggers.

    8. Fruity, sugary cocktails are triggers sad I have started drinking Hendricks gin with water and cucumber 75% of the time...!

    9. Raspberries & blueberries seem to be ok.

    10. Aqua fresh 'little teeth' toothpaste was recommended to me by the specialist and I've used it ever since. Going back to other toothpastes really hurts my gums/ulcers.

    11. Coffee houses. The monin syrups used tend to have benzoates. A few don't (such as caramel and amaretto) but most do.

    12. Spices are triggers.

    13. Coconut oil is good for swirling round ulcers. I also use it to drink, added to hot milk or coffee etc. it's anti inflammatory so helps soothe any ulcers along your digestive tract.

    14. Corsodyl alcohol free mouthwash is ok but I have to dilute it as it really stings ulcers. Better than nothing though.

    15. Chewing gum. Sometimes this is a trigger and sometimes not. I was advised to avoid it.

    i am never free from ulcers but I have learned to balance it toa manageable level, while still enjoying all of the things I've listed above. 

     

    • JoannaG
      JoannaG arran19

      Posted

      Hello. It was nice to read your post. Do you take any meds for your OFG? 

      It seems like this illness has all the best foods as triggers and that is just not fair! 

      I was told by someone that tomatoes have naturally occurring benzoates.  Not sure if that's true but I was told.

      Again thanks for the heads up on what to steer clear of. 

       smile

    • arran19
      arran19 JoannaG

      Posted

      Hello! No, I don't take anything for it. As soon as I was diagnosed, I got a real scare and basically only ate chicken, fish, eggs, steamed veg and nuts for 3 months! The ulcers cleared up completely but it was impossible to sustain. My consultant thinks I altered the course of the disease by doing that super strict diet (as I don't have Crohns yet, despite the severity of my mouth ulcers). 

      Now I always have them but it's just to varying degrees. If it's getting too bad to cope with, I just 'go clean' for a few days-week and that usually sorts me out! I find it quite easy to avoid most of the triggers but chocolate is my downfall and my worst trigger! 

      Spinach is another one to add to my list, same effect as tomatoes.  It's interesting if you google foods containing natural benzoates...but soul destroying too as it just adds more to the list!

      I'd be interested to know if anyone else who can't take chocolate, is ok with the white lindor balls? They are fine for me, don't know why but I'm certainly not complaining!

      Although I have severe ulcers, I don't seem to get the other OFG problems to the same degree. My lips swell a bit if I repeatedly eat something bad but my face doesn't swell, only where the ulcer scar tissue is inside my mouth. I don't react badly to eating something hence why I don't cut everything out. I just manage it. Plus do some eat clean days, which helps keep it in check. I'd recommend that, it certainly works for me and I don't take medication. 

  • Guest
    Guest Emmsj

    Posted

    Hello,

    I was diognosed with OFG in 2006. I had very bad lip swelling and all of my cheeks were visibly red and sore which went away after about a year through various treatments such as injections and a liquid diet (which I hated!!!). I went on the cinnamon and benzoate-free diet but didn't really stick to it. Since then my lip would occasionally swell when I had a stomach ache or ate certain foods other than that has been great. Last year, it spread to my bowels and I'm now having infliximab through iv which has kept it under control and I am now in remission :-) However, going back to my OFG my lip isn't fully back to normal as one half of my upper lip is higher than the other side and my cheek also is slightly more swollen than the other side. Just wondering if anyone else has experienced this and what to do to make it back to normal. 

    Thanksss!!!!!

  • amber83477
    amber83477 Emmsj

    Posted

    I have also just found out I have ofg, as a 17 year old girl my lip swelling up and disfiguring my face wasn't the best occurrence of my life, my lips had swelled for 8 months and never went down. I woke up like it and went straight to a walk in gp, they said I had a really bad cold sore. I got antiviral tablets and they did nothing, I kept going back every month to my doctors and none of them had a clue as I tried various tablets and creams, blood tests revealed I had low vitamin B12 levels. Went through a course of injections and still no luck. In the end I had to push to get a referal to the maxiofacial clinic, they told me I had crohns disease and I had to cut out everything that wasn't natural, I was eating steamed meat or fish and veg everyday, this was for another 3 months...This managed to get my face back to normal, but then had to see a specialist in birmingham who diagnosed me with ofg. I'm now on the waiting list to have a colonoscopy and biopsy of my lip, it has taken almost a year to get the right diagnosis but now I have I'm just wondering if there's any tips on the diet point of view, such as is white chocolate okay? And what is cinnamon and benzoate found in?
    • JoannaG
      JoannaG amber83477

      Posted

      Hi Amber. Thank you for sharing your story. I am sorry you have to deal with the annoying illness and at 17, bless your heart. I will tell you that the best information I have found on this illness has come from a support group on Facebook.  It's called Oral Crohns Disease (Orofacial Granulomatosis -OFG). You just have to request to join. Once on there you can view the files which has diet information on the Cinnamon Free and Benzoate Free diet. To sum it up, let me tell you Benzoate or a derritive is in so many food items as well as topical products like shampoos, conditioners, body wash, etc...the list is huge. Check that fb group out, it's great. I saw in your post you mentioned Birmingham, are you in Alabama? I am in the USA, the majority of people with the illness are in England, Scotland, New Zealand and Australia. 

      I am glad to hear that you had great success with diet and your lip swelling going down. How long did it take for the swelling to go away and your lips back to normal? Are you taking any meds for your OFG?  Again, thanks for sharing.

  • paula70021
    paula70021 Emmsj

    Posted

    Hi

    My Daughter has just been diagnosed with this condition and it also waiting for tests to see if she also has Crohns, It is very confusing and i wondered how you have managed as i see it is a year since you last posted and wondered if you had any tips as I am struggling with what she can actually eat and what products she can actually use as Benzoates seem to be in most things, any advide welcome.

    • JoannaG
      JoannaG paula70021

      Posted

      Hi Paula. I highly recommend a Facebook group called: Oral Crohns Disease (Orofacial Granulomatosis -OFG). I am a member and there is so much great information on there. They have lists of what you can and can't eat, etc...  I was diagnosed with OFG in March of this year and it's horrible. I live in the USA and have not found a Dr that has actually treated it. My Dr is wonderful and she has read up on it. I'm sorry to hear your daughter has it. Hope she is feeling better soon. 
  • Mylisa
    Mylisa Emmsj

    Posted

    My son has oral facial crohns disease.  It took six months of different docs to diagnose it.  What helped.  Gluten free diet helped  but did not alleviate his outward appearance.  I did not want heavy drugs in his system so he then tried  an ensure diet for three months.  All symptoms went away but doctors wanted him on  drugs bc his inflammatory markers never lowered. We reluctantly used remicade with methotrexate.  However we have continuously investigated more natural options such as vitamins that reduce inflammation milk thistle, turmeric, probiotic, multivitamin. And more.  The remicade has helped his markers, but now we are waiting to   See if the vitamins concoction has had helped .  Hope this helps 
    • paula70021
      paula70021 Mylisa

      Posted

      Hi thank you we are just waiting to see a specialist to see if she has Crohn's but trying to keep her on the CB free diet which does not help before Christmas 
    • bob74
      bob74 Mylisa

      Posted

      Methotrexate is an awful drug.

      Where abouts are you? I get the impression that US doctors reach for the pill box before thinking about diet - more money for them. The CB free diet is, IMHO, the way to go. It does get easier over time, though tough to start with.

    • siobhanM
      siobhanM Mylisa

      Posted

      Hi Mylisa

      ​My son was diagnosed with OFG a few months ago and we have been trying to stick to the diet with varied results. We were on holiday a couple of weeks ago and his lips were not perfect but loads better. I can onl think there was something he did not eat which he normally does and I think this may be milk. We have been given the diet sheet and have his first appointment with a dietician next week.

      ​In the meantime his dr want to prescribe him Azathioprine which is an immunosuppressant and we have resisted this until now. Unfortunately his Dad and I disagree on treatment. His Dad does not see a problem whereas I do not want him to take this for a couple of reasons. Obviously there are the side efects and that his immunity will be compromised. Also, how can he ever come off it if we have never got to the bottom of his triggers. I have recently been trying natural inflammatories food and supplements and wonder how you got on with this approach.

      ​thanks for any advice

      ​anyway, h

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