Orofacial granulomatosis - Crohns disease

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.

I only had a lip biopsy but this was 15 years ago. They knew right away.

Where are u based? I can recommend doctors in the northwest x

HI Jen,

thanks for replying. We actually live in Australia so will be getting referred to someone in Sydney. When this happens will request another biopsy when Jakes lips are swollen so hopefully will get a definite diagnosis.

All the best

Hi I have also just been diagnosed with OFG I am only 15 and really struggling. I have also been put onto the benzoates and cinnamon free diet. Is there anything that has really helped any of you? As I have been really struggling

Lauren

Hi Lauren, I am really sorry to hear you are struggling. We find with Jason that spices make him flare, such things as curries even mild ones. He also stays clear of fizzy drinks, flavoured crisps and only has choc and sweets for a treat as we're sure this make his lips worse. They say that a bland diet is better to keep it all under control. So be careful with jarred sauces and ketchups. We have tried Jason on soya milk but this didn't make his lips react any better. The children's hospital have now started Jason on a 6 week meal replacement milkshake diet, in the hope that it will get rid of the inflammation and then gradually re-introduce food. I must admit he he really struggling and we are just finishing week 1. Jasons lips started swelling back last. Summer and have never returned to normal size so we are hoping that this wil be successful even for just short term. Good luck and feel free to ask about anything. By the way have you been tested for crohns?

Jo

Hi jo thank you very much. It's good to know there are other people out there too. I haven't been tested for chrons yet but we think this is the next step although not wanting to go through that. Really appreciate you getting back to me, has your son developed chrons or has he got the all clear?

And also did everyone have to get a biopsy to receive their results as when I was first diagnosed I went to the dental hospital and took one look inside my mouth and told me I didn't need a biopsy as it was so bad the signs were so obvious it was OFG.