Orofacial granulomatosis - Crohns disease

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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 :-)

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  • Posted

    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

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  • Posted

    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

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  • Posted

    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

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  • Posted

    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

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  • Posted

    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

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  • Posted

    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.

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  • Posted

    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?

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    • Posted

      Dear Joanne

      My 24 year old son was diagnosed with OFG when he was 10.  It was a horrid journey until we discovered the Cinnamon and Benzoate free diet. He was so very brave and we had three attempts of steroid injections that would reduce the swelling and allow the drugs into work.  However it left him with a redness around his lower lip even when it was not swollen and the lip is permanently thickened.  Not many notice it, if any, but we know what his lip should look like.  

      All I can say is that with age the symptoms to lessen.  He sticks to the diet which means goodbye to all the spicy varied  food we used to eat and anything with tomato concentrate to tinned tomatoes.  No chocolate and fruit is just bananas and citrus fruits. However in recent months he has tried the odd piece of white chocolate but it is the odd piece.  

      No more Diet Coke or other fizzy drinks.   Orange, Mango and Apple seem fine.  Appletise as well does not cause any flare up.   Vodka is okay but nothing else other than beer and wine.  

      I always cook from scratch so we rarely had ready meals but you have to avoid anything with preservatives and he used to love salami!

      The redness is still there and if he is beardless he uses a benefit cover up on it.  He is such a handsome boy and at times I found it so distressing especially when he was upset with a huge flare up that bruised all of his lower face.  Of course I can see when he is on one of the many party benders the lip will swell etc but he refuses to see the correlation between him being run down and the lip.  I mean what do I know - a mere female!

      I know they take recreational drugs and I doubt they help.  

      He did let slip that he always has a loose tummy and I wonder if he has slightly crohn's but he has to investigate that himself.  

      Anyway I just wanted to let you know that once they are through puberty it does improve.   We live in South West London and saw a lovely man called Professor Peter Mortimer before we were transferred to the Guy's Oral Facial unit for OFG.  Prof Mortimer always reassured me that with age it does get better.

      I wish you luck and how unlucky are out boys but as I always said to Zachary it could be a lot worse.  However I know as a mother how upset you must be and it does get better.

      With kind regards

      Belinda Stone

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    • Posted

      Dear Belinda,

      i just  wanted to say thankyou for your recent message, it is reassuring to hear from other parents who have coped and been thru years of experience of a child with OFG.

      I remember when Jason was at his lowest and his lips/mouth being at there worst thinking I would give up use of my right arm if only he could go back to how he was before the OFG came along.

      jason is now 15years old, and I couldn't Be more proud of him and how he has dealt with everything. 

      I have always said to him that  others have it a lot worse too.

      he will still  have a fizzy drink and chocolate but at 15 he knows that it could cause swelling etc.

      He still steers clear of spices and cinnamon, and I as always check labels on new products for any signs off  benzoates before buying.

      We now just see the OFG specialist at BRI yearly,  and like your son he has loose tummy experiences.(but he no longer sees the gastro consultant yearly) although we have been advised if any problems we can get this reinstated.

      we know that too much wheat can also trigger cramps etc, so we have changed breakfast cereals.

      One thing I have noticed is he gets tired fairly easily, he plays sports and is active, but at the same times he will often falls asleep for an hour Or so after school.   This could just be typical teenager behaviour , however my daughter was never like this.

      i sometimes think that his oral chrons could be affecting his tiredness?!

      he is just over 6ft tall and slim build so his growing definitely has not been affected. Like your son, Jason  I feel is a handsome lad and so as his mum I do really feel for  him when he experiences a flare.

      again thankyou for your email it means a lot, sending you and your son very best wishes.

      Kindest Regards

      Jo

       

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    • Posted

      Hi Belinda,

      My 12 year old son has just been diagnosed with OFG and is currently undergoing tests for Crohn's. I'm so heartened to hear that things improve once they are through puberty. I feel so sad for him. As you say about Zachary, my son has such a beautiful face and his swollen lip is making him feel so self-conscious. I'm struggling to think of interesting meals to tempt him at the moment. I do always cook from scratch when we eat at home but we had lots of tomato-based meals until now. He loves curry and spicy food and he also adores chocolate so that's going to be hard for him.

      Kindest regards,

      Alison

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  • Posted

    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

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  • Posted

    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?

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  • Posted

    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

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  • Posted

    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

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  • Posted

    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
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