1. Community
  2. Gut, bowel and stomach
  3. Crohn's Disease

Orofacial granulomatosis - Crohns disease

Posted , 49 users are following.

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

Prev Next
  • siobhan70214
    siobhan70214 Emmsj

    Posted

    Hi, I've just been diagnosed with "mild Crohn's inflammation" not active atm, but I am going to get an oral biopsy a week on Monday to get tested for oral facial gramulatosis. I have been dealing with very sore mouth ulcers, up to 15 at a time, for the past five years, I sometimes get swollen lips and cracks at the side aswell. They have out me on the benzoate diet, that I am really struggling with too. 

    Siobhan :-) 

  • daliborka70881
    daliborka70881 Emmsj

    Posted

    Hi there

    I live in Canada and my 11 year old son it's been diagnosed with ofg and also with Chron's , but mild onesad

    Yes, diet free of benzoate and cinnamon but also benzoic acid which is found in most fruit and vegetable , cheese , yogurt , milk , etc.. It took me so long to figure it out what food is that and how much benzoic acid it's in there , percentige , which is really important when it comes to lip swelling ..

    Google it "benzoic acid in food.. Good luck

  • kaitlyn1139
    kaitlyn1139 Emmsj

    Posted

    Hi,

    So for two years, I have had a swollen lip. Now originally, I woke up one morning and half of my bottom lip was swollen. At the time I was 12 turning 13 in a few days(im 15 now) and my parents shook it off. It wasn't for a good.. 3-4 days until I saw a doctor, and at this point I had been given a short term high-dose steriods. This didn't work at all. So finally I was taken to a hospital after a little bit, and was taken to see and ENT doctor, and soo many more. I just kept getting thrown in new directions and no one had ever seen what ever is wrong with me. The one thing I have noticed is heat makes a difference. In summer it gets pretty bad. In November, of 2013, I had a biopsy down and they found granulomas, suspecting Crohn's. But February of 2014, I had a colonoscopy, and an the throat one, of which I can't spell. Turs out I was perfectly clear, and had no issues, well my Mom has it and is a-symptematic. After that, all they could think to do was give me a Ken-a-log (im not sure how to spell that either) injection into my lip which keep it to a lower of swelling for a month. But I'm aware that using it too much will just eventually not work. After doing some research because my dermatoligist I've been seeing has no clue where to go next, I came across Thyroid glands not working. Well with Granulomas, and the Thyroid, this popped up. I'm sure this won't be seen, but I just wanted to share my story to someone. But also lettig you know that I'm not currently affected by Crohn's. I will be calling my Dermatoligist soon to hopefully sees what she says. But after two years, its gone down much more than how it started. But now it's starting to affect my eye... But best of luck!

    -Kaitlyn

    • silvano02985
      silvano02985 kaitlyn1139

      Posted

      Hi Caitlin I have similar problems I have seem  a immune specialist and he put me on imuran and steroids immunosuppressant ,it seems that immune system is not fighting and attacking facial parts  causing inflammation must be treated  done a lot of research causes are unclear  could be virus low immunity fungal or dietary eating healthy does help but wont solve the problem make a appointment with a immune specialist hope this helps it will take time to get bettor 
    • siobhanM
      siobhanM silvano02985

      Posted

      Hi

      ​My son was diagnosed with Orofacial Granulomatosis a few months ago and if it is this that you are dealing with can I suggest you ask your dentist for a referral to an oral unit. Our GP did not know what they were dealing with. We attend the dental hospital in Liverpool. My son had badly swollen lips and they have reduced by sticking to a cinnamon and benzoate free diet which is mind blowing to begin with but worth it when it works. Any other questions please ask

      ​Siobhan x

  • donna_80473
    donna_80473 Emmsj

    Posted

    My son has been diagnosed with this today I am so worried. God knows what he can have to eat. He has had red rash and lip swelling for 1 year now so I hope this works
    • manj06356
      manj06356 donna_80473

      Posted

      Hi Donna my daughter was diagnosed recently too. Could you let me know what you started with since you have been dealing with this most recently as a mother on this group. So overwhelmed with all of it.
  • lynn36690
    lynn36690 Emmsj

    Posted

    Hi, my brother was recently diagnosed with either OFG or melkersson-rosenthal syndrome, doc wrote both things on a piece of paper. I asked about diet and was told there were no known cures or triggers. Good to find this post as it gives a bit of hope esp diet advice. Have been looking for the UK facebook group mentioned and googled but couldn't find it, has anyone got the link? He also has a colonoscopy coming up as he has been passing blood and feeling tired. Great to find this group as docs not much use. We are based in Derry, NI if any other readers are aware of support groups please let me knwow, he's been suffering over a year and there just doesn't seem to be any help in the NHS that we can find.

    Lynn.

  • tenacioustim
    tenacioustim Emmsj

    Posted

    Hi folks- have been living with OFG for 20 odd years and the elimination diet definitely works but never got rid of the cause. Every now and again I do a search online to see if any new research on it and came across these articles on ResearchGate about amalgam (mercury) fillings:

    https://www.researchgate.net/publication/51230248_Orofacial_granulomatosis_associated_with_hypersensitivity_to_dental_amalgam

    https://www.researchgate.net/publication/10798962_Resolution_of_orofacial_granulomatosis_with_amalgam_removal

    (links on each to download the full text of the studies)

    I recently had my 5 amalgam mercury fillings replaced with composite and the difference after a couple of days was palpable- the swelling in my face had reduced and the bleeding from my gums when brushing my teeth stopped completely. The fissures on my tongue (Melkersson-Rosenthal) are still there but early days yet to know if it was the mercury causing all of my symptoms. 

    I am still avoiding the usual culprits of all benzoic acids and cinnamon along with triethanolamine and salicylic acid. Read on here about sorbic acid which I hadn't heard of causing issues- can't say that it affected me over the years. However grains still affect me- wheat is the usual one to avoid but oat's and spelt in particular cause a reaction for me. 

     

  • siobhanM
    siobhanM Emmsj

    Posted

    My 16 year old son has just been diagnosed and I thought I might get some positive feedback even though these are relatively old posts.

    I am not altogether happy with the suggested treatment and wondered what worked for others. Thanks in advance -I am at my wit's end and so sad for my locely boy

    • ellie21
      ellie21 siobhanM

      Posted

      Hi Siobhan

      Cinnamon and benzoate diet will definetly help, it just takes time. Has your son had a patch test to find out what else he's allergic to? With ofg you get further allergies than just cinnamon and benzoates.

      I'd stay away from any fragranced products completely as this can flare it up.

      Brushing teeth regularly/ flossing and using corsodyl will help fight infection and flared gums.

      When I was young the nhs made me a gum retainer which I used to put steroid gel in and sleep with during the night. They discontinued this years ago but some other countries may still have this. It helped a lot so I'm gutted they discontinued it. I also had injections to my gums/ lips and cheeks at the hospital to reduce swelling when I was 13 and they've never swollen up much since. The professor said to me typically if you start having the injections as a child you need 3 injections, as a teenager 2/3 and an adult is 1. I've only had one and never needed another one since so I may be one of the lucky ones. This was pretty much the opposite of having Botox

      The only symptoms I get now 8 years later are red and swollen gums every now and then / cobbling/ peeling gums at the top/ red tongue etc. You wouldn't be able to tell I had ofg until you looked in my mouth, not from looking at the outside.

      i hope he feels better soon X

    • siobhanM
      siobhanM ellie21

      Posted

      Thank you for taking the time to reply. We are seeing a dermatogist who has suggested immunosuppressants despite my suggestion of injections. I requested allergy testing but got refused that. I am thinking of requesting a referral to Guys Hospital in London as they have a unit dedicated to OFG. We have been trying the diet but think we need to get the swelling down and maintain it with the diet. Thanks for giving us hope. What hospital did you attend?x
    • tenacioustim
      tenacioustim siobhanM

      Posted

      Definitely agree with others on cinnamon and benzoate's. If your son has amalgam fillings I would also look at getting those replaced with composite- made a huge difference for me.

    • ellie21
      ellie21 siobhanM

      Posted

      Hey

      I attend the oral clinic at the Royal London hospital in whitechapel. They are good - take a scan of your face/ mouth each time you go.

      I'm surprised they haven't recommended a patch test- that's one of the first thing they did when I was diagnosed along with biopsies etc

      It will be better to see someone who specialises in oral conditions than a dermatologist! I would definetly ask so see a specialist like you said

    • siobhanM
      siobhanM tenacioustim

      Posted

      Thank you for that. I had read about fillings during my extensive search for answers bu he doesn't have any fillings. I wish the answer to this was as easy

    • siobhanM
      siobhanM ellie21

      Posted

      He now has an appointment with his dentist on Friday so hopefully we can be referred to the right place now. Your information has been so helpful and I am so very grateful x
    • judith_83796
      judith_83796 siobhanM

      Posted

      Hi Siobhan, my now 10 year old son was diagnosed with OFG in 2012 age 5 at Guys and St. Thomas. They were / are really good but the diet is the key to keeping it under control. He is too young for any medications according to them. We had no other allergy tests done but he is closely monitored.

      I have to say sticking to the diet for a child is a nightmare but we try our best.

      Since moved and now under new hospital, hoping as he gets older he will become more aware and follow the diet better.

      Best wishes to your son.

    • siobhanM
      siobhanM judith_83796

      Posted

      Thanks so much for replying Judith. At 16 it is hard when out with friends eating pizza and chocolate but on the whole he is mature enough to know the outcome. We were abroad a couple of weeks ago and interestingly despite not sticking to the diet strictly his lips improved. It is now making me think there could be an environmental link and will suggest this to the doctot at next appointment. I asked for allergy testing previously and was advised it wasn't necessary.. i am also giving him turmeric to try and reduce inflammation naturally to try and avoid the use of immunosuppressants. It is comforting to read on here that it may improve after puberty so we are hanging onto that.

    • tenacioustim
      tenacioustim siobhanM

      Posted

      Hi Siobhan- I have tried various types of turmeric (for migraines though) and found that the most effective one is a formulation called BCM-95. LifeExtension has one called Super Bio-Curcumin which has this formulation and is reasonably enough priced in Amazon UK (although price keeps on climbing!)  After looking at different studies, BCM-95 seems to be the one that is best absorbed by the body so it might make a difference. I currently take two a day with food and along with CoQ10 that has BioPerine which is supposed to help with absorbion. 
    • ciaramegxo
      ciaramegxo siobhanM

      Posted

      Hi Siobhan, 

      Not sure if your still looking for help but just came across your post.

      I was diagnosed when I was 14, I had symptoms in my face but only when u was 17-18 my bottom lip became swollen. (I am now 21) Benzoate and cinnamon free diet definitely works.

      Steroid tablets where required are also a great help, I also received three courses of steroid injections which were not enjoyable but have had the best response yet. Also tried an antibiotic called azithromycin which is a twelve week course!! Isn’t easy but just trial and error and hopefully you find something that helps xxx

    • siobhanM
      siobhanM ciaramegxo

      Posted

      Thank you so much for taking the time to write. We have come a long way but not out the woods yet. He knows what to do with the diet bu getting him to stick to it is a nightmare sometimes. He had injections in October and they worked but he thought all was fine when he introduced foods so ate normally but they swelled up again around Christmas and his Dr said he won't give him any more injections till July at least. How far apart were your injections and do you know the dose?

    • ellie21
      ellie21 siobhanM

      Posted

      Hey ladies,

      Just wanted to say i also had the steroid injection at 13 or so and never needed one since. I'm 22 now.

      However I was told by my professor that some people can go up to 3 injections I.e one as a child, second as a teen and one more as an adult to keep it under control.

      Ellie

    • siobhanM
      siobhanM ellie21

      Posted

      Thanks for that Ellie. Do you stick to a cinnamon and benzoate free diet? People seem to respond differently with injections. Some still have to stick to the diet and others don't x

    • ciaramegxo
      ciaramegxo siobhanM

      Posted

      Yeah it is a tricky way I didn’t think I’d ever find something that would work but I’m still trying things!! I got three injections at a time and three weeks apart and that was in August. Then in about October I went onto azithromycin for twelve weeks! I’ve jot had any more injections yet but have to go back in April for my next review and they will decide then if I need them. I’m not sure what the dose was sorry! x
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.