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 :-)
Hi
I was diagnosed with this about 5 years ago. Though my dentist couldn't tell me much about it or the cause. When it flares up for me i get severe mouth ulcers. To the point where i can't drink/eat/talk. I am going back to the dental hospital soon as I have had another flare up and I haven't had one for a over a year. What is the diet change they have mentioned to you? I would be keen to give it a try!! I haven't had any allergy tests as far as I am aware (thugh I have had a few blood samples done) and I have been tested for Crohns but fortunately I am negative for it!
Leanne x
Hi Leanne
Sorry to hear you have had another flare up. OFG Is not nice . Unfortunately I have just been diagnosed with crohns disease :-( a high % of people with OFG Do get crohns at some stage in their life , so although u were tested 5 years ago I would rec u Being tested again. are your bowel habits normal ? Every doc told me there was no way I had crohns but gut biopsies said otherwise ! It's the only way to confirm it.
Type in cinnamon & benzoate free diet in google it will give u a list of foods to avoid. I must stress its very difficult & impossible to cut out everything but if definately helped me. Basically u can't eat any spices, preservatives , flavourings keep to a minimum & care which dental products u use. Nothing with BENZOATEs in. Defo go back to your oral doc sounds like u need more tests & also to rule out ulcerative colitis as again that is a gut disease that causes mouth ulcers. Hope that helps Emma x
Hi
I too have been dignosed with OFG for a few years now,i had it confirmed by a biopsy on my bottom lip,which in itself wasnt a nice experience,but confirmed my diagnosis.It has proved quite difficult with the avoidance in my diet,but generally manage to keep it under control,without the treatment of steroid injections.I have undergone a colonoscopy to rule out crohns,just awaiting my results.I am so pleased to have discovered this site so as to be able to share with other sufferers as this is such a rare condition.My condition causes both my lips and one side of my face to swell,which proves quite embarassing as i work with the public.I would be interested to hear from anyone who has tried any natural remedies,i am at present trialing facial reflexology.
janine x
Wow this is great to finally find a site that mentions OFG. My daughter was diagnosed with it when she was 2 years old and is now 12. We to do the elimination diet of cinnamons and benzoates...We found its quite technical to always follow the lists especially when my daughter also has coeliacs and is lactose intolerant as some of the ingredients are in the g free foods..
We have found that its much easier in the long run to go non processed foods as it does take a long time to do shopping label reading .
She is checked annually via ways of the cal protectin test then if that shows a number to high she has another colonoscopy. I have found over the years that the OFG seems to change on what might go wrong with my daughter. She has had her tongue swell so much the tongue was hanging out of her mouth as it was to big for her mouth, her eye decided to get a growth on it and that took 3 months of steroid treatment before that went away.
I find if you can do as much naturally without taking the steroids its a better road, I will come back to here and finish this post
It's so good to read about someone else with OFG. I was diagnosed at the end of 2012, after a year of antihistamines and changing to progesterone only pill.
I have since been trying to control my swollen upper lip with diet, which does seem to help, but my lip is still far from normal. However, I'm concerned that Crohns has not been ruled out and I have been discharged from the hospital. Is a colonoscopy the only way to confirm Crohns?
Emma x
If I remember rightly. They first did a stool sample test which is the cal protectin test, hopefully I'm spelling that right and if this test shows a high reading then its probably a colonoscopy.Try not to stress too much as that won't help with the lips either, I know its easier said than done.
Chocolate and berry foods or flavors are also her triggers, We first starting keeping a diary on her food intake to help see what or when she triggered and those things have been eliminated, The only time she has anything that may trigger is xmas day and her birthday the only two days I don't monitor her to heavily.
Hi my names Jo, and my 12 yr old son Jason began having lip swelling last Summer. He was diagnosed with OFG last Autumn, and has just recently had an endoscopy, colonscopy procedures and biopsy taken to test, For internal crohns. We are very lucky and all tests have come back clear with no problem. Jason will have an mri scan sometime in the near future just to reach the areas that the scopes couldn't reach, but we're hopeful this will be fine.
We find certain foods and drinks really make his lips swelling badly, and his gums become inflamed and sensitive when eating. He has also had ulcers and at his worst could barely open his mouth to brush his teeth. Our consultant recently prescribed a steriod mouthwash containing benzoate. I questioned whether or not Jason should be trying it because I'd already been informed by the dental hospital that he should stay clear of cinnamon and benzoate. Anyway after trying twice and his lips flaring badly the next morning I've decided to steering clear in the future. Does anyone think that wheat products or dairy products make there lips and mouth worse?
Hi Jo, sorry to hear about your son. I was diagnosed with OFG 5 years ago and never had trouble with wheat or dairy products.
I have been on a cinnamon and benzoate free diet as well as using benzoate free products which has really settled my OFG down and is recommended for people with OFG. Also, I use a Corsodyl mouthwash which works tremendously and an electric toothbrush to make sure bacteria doesn't gather under the gums incase they get swollen, as this can damage the teeth and agrivate the disease further!
When I was 13 I had an injection to the lips/gums to lower the swelling/inflamation and I have not had many problems since. If the problem persists, perhaps this may be an option? I am not a professional, just giving personal advice of what helped me. But the cinnamon and benzoate free diet will help, make sure you beware of products and medication as well though as benzoate is a preservative found in many products!
I hope your son gets better soon,
Ellie
Hi Ellie and thankyou for replying, it's so reassuring to get other people's views and advice on how they deal with OFG. The last few months have been particularly difficult for Jason and he has broken down emotionally which is hard as a mum to experience, especially when it's something that he has never done in the past. Typically like any child he gets frustrated after all the blood tests and scopes he just wants an answer and possibly medication to help him. We are seeing his consultant in the next few weeks and I honestly think that he will be reluctant to prescribe anything, I think we'll be advised to manage the OFG with diet alone and the restrictions of benzoate and cinnamon.
It was really nice to hear that you have your OFG under control. Are there certain foods that you always stay clear of, and would never have because you know that you react badly too?
Hi
When I was first diagnosed with OFG I wasn't told anythig about the diet! I only found that out about a year ago. I come to realise that the main triggers for me are chocolate and sweet treats. I also react to pepsi but not coke? Also some alcohcol. There are so many things on the special diet that I don't cut it all out. I just restrict certain foods when my ulcers flare up.
As for the steroid mothwash, is it the betnesol tablets our son has been rescribed? I have been using these for years nd have just seen they have sodim benzoate in!! I am never sure if they work or not? Still takes about 10days for my ulcers to heal (which im pretty sure is normal healing time without treatment), but I always have new ulcers forming. When I was first diagnosed I only had about 3weeks free of ulcers in 2years!! Was a nightmare!! Though for me, anything less than 5 ulcers is good, and I can cope with. I hardly even notice them now. I then had a period of about 10months where my ulcers where pretty controlled without any change in diet or e having to do anything in particular? But now they have started to flare up again which i very annoying. But I guess it something i am just going to have to deal with. At least now I know about the diet I can try something which may help.
Hope your son is coping ok Jo.
Leanne
Just seen your recent post Jo. Its taken me yeats to find out what causing a reaction in me. I also eat a lot of spicey food and fruits which are supposed to be avoided on the diet. I am not sure if they specifically cause a reaction as I am probably eating quite a few of these foods a one time so it's hard to pinpoint a specific one. And because I feel pants when I have my mouth ulcers I tend to want to eat cakes/choc etc that make me feel better despite the pain!! Difflam mouthwash works wonders!! Also some sore throat anaesthetic is a useful product to have around.
Leanne
Hi Leanne, and nice to hear about you and how you deal with your OFG. We too definitely find that chocolate, some fizzy drinks etc make Jasons lips worse. And yes it's betnesol soluble tablets that Jason has been prescribed, we definitely won't be using them again, and will probably stick to mouthwashes and salted water when his next lot of ulcers reoccurr. I've joined a crohns forum and a few people on there also have OFG or MRS which has similar symptoms and they would not use anything containing benzoates. Another thing Jason loves is fruit cake, mince pies and hot cross buns but they contain spices so he's reacted to those too. The last time he had a mild curry his lips swelled badly too so he'll have to stay clear of those too, I bought a mild tesco korma jar to mix with some chicken but even that made him swell so it's just not worth it. He used to eat pizzas often too but doesn't have them that often anymore, nor tomato sauce or baked beans or his fave tomato soup. We have seen an improvement but his lips aren't normal size. Please keep in touch and really hope you can get better control of your ulcers etc. X
Hi I have just bee reading everyones posts on OFG, my son is 15yrs old and possible has this condition athough we are still trying to get a definite diagnoses. When he was about 3yrs old he was sent to see a dermatologist as he had white patches inside his mouth. A biopsy was not done as the doctor wanted to wait and see if anything developed as he thought my son was to young. It diid not cause my son any concerns so we didnt do anything further. Now my sons lips swell and again he has the white patchy flakey skin inside his mouth. Your posts have been really informative and I have jotted down some notes etc and will seek further testing for my son. I have started him on a preservative, non processed free diet but it is difficult to maintain and I struggle with variety of meals for him. Can anyone suggest any good easy recipes or a site I can google for preservative free meals. I will continue to read your posts as any informaion on OFG will definately help me understand what I need to do to help my son with his medical condition.
Hi Annette, I've not managed to find recipes or any preservative free meal info. All i do is give Jason what he's always had in the past but without the sauces, ie tomato sauce, very little mayo. I think most foods in tins and jars are probably best avoided. Jason likes most meats, rice, loves pasta, potatos, chips and his veg and salad choice is growing now too. Definately no spices either, and certain E200 numbers. Have you googled the benzoate and cinnamon free diet on the internet ? as that will give you a list of foods that should be avoided and foods that are safe.
Jason has margarine but on the list it states it can also have preservatives, so not sure on that one, if maybe a little butter would be a safer option.
I think alot of our food choices are going to be down to trial and error, but with Jason its not always the same day that you see the signs of a bad food choice it can be the next day.
Jason has never had the white patchy flakey skin inside his mouth that your son has experienced, but he has had ulcers, red inflamed gums, both his lips now swell when he has a bad onset, and sometimes his neck glands swell. Jason has been tested for a few food allergys but all negative.
So it is definately not allergy related more his immune system which is fighting against the preservatives. Good luck with finding out for info for you son, and nice to keep in touch.
Hi Joanne thankyou for your information. Yes I hve downloaded the benzoate & cinnamon free diet on the internet and I think I will do he same as you - feed him normally but eliminate the sauces, gravies etc. I am not 100% certain Jake has OFG as to date he hasnt had any ulceration in his mouth but as I said he gets white patchy flaky skin and the swelling of his lips. We have another appointmet next week so I think I wll ask for some more tests to get a definite diagnosis, he had a lip biopsy done and I was given two different results so its very frustrating at the moment. My dermatologist said to go with the biopsy results given to me from my dental specialist but I think I want another just to confirm. How can you be given two different readings from the same lip biopsy???? When Jake is on the diet his lips do subside, Jake also had the allergy testing and it was negative so I tend to think it is also his immune system. Its very bizarre and I just want to get to the bottom of it. Jake also suffers very bad sinus and I think this is also somehow related, there are times when I have to collect him from school as his sinus is so bad he comes home and sleeps, clarantyne and sinus medication doesn't seem to work on him very well.
I am glad I stumbled across this forum while trying to do some research and its nice to be able to talk to others with the same problems.
Will let you know how we get on and I also hope Jason doesn't get any worse.
Cheers
Hi everyone,
I was finally diagnosed on wednesday with OFG. I have now been placed on the diet but have also been told to watch the cosmetics i use, has anyone else been told this and of so what products do you now use?
Thanks
I've not heard of avoiding cosmetics?? What info have people got regarding the diet? I haven't had anything specific about the diet from my dentist, I found out about it on here. Then I found a diet sheet on the internet. Though its quite vague.
Thanks
Leanne
Hi All
So happy to find some other sufferers!
I was first diagnosed with OFG when I was 16, 15 years ago. It took 4 different doctors to diagnose me and it was before the internet so I had limited info. As a 16 year old I hated it. I had a biopsy, allergy tests and crohnes tests. But I was negative for chrones. It used to just be a swelling lip which I had steroid injections for, which used to work and last 4 months. When I started uni it went away and stayed away until we bought a new build when I was 24. since then it hasn’t gone away.
I was given steroid tablets to take for my wedding day so it stayed away.
The last 3 years it has gotten worse. I now have swollen lips, gums, ulcers, cuts in the corners of my mouth and swelling of my salivary glands. I was referred back to the dental hospital as when I was pregnant it got so bad I couldn’t eat. I am about to start the diet and now have two gels and a mouth wash prescribed which I have just started.
My main recommendations from throughout the years are to
use fragrance free items cosmetics,
avoid fizzy drinks,
avoid effervescent tablets (like berroca),
use non-bio washing powders
avoid too much salt and spice.
avoid going in the ocean and too much sun
Avoid antibacterial products
Avoid anything to sugary like sweets
And I put a lot of it down to hormones.
Anyway hope this helps someone! I will let you know how the gels and mouth washes get on!
Hi All, Well took my son to see his dentist and he advised that the two biopsy results I have been given are inconclusive so he suggested we get another biopsy done. One result was from the dermatolgist the other from the oral specialist. As we are relocating intestate he is going to refer us to someone else, he is trying to find somebody who has patients with OFG, someone familar with this condition so I will just try to keep Jake on the diet until we can get a proper diagnosis. All Jakes blood tests were negative, allergy testing negative. Can you tell me how you received a positive diagnosis was it from a biopsy alone or did you have other types of tests?????
Cheers Everyone.