Orofacial granulomatosis - Crohns disease

I was diagnosed approx 7 years ago, in Liverpool UK? I had blood tests, biopsy from insdie my mouth and ha to have scan over my guts after having some dye put into my intestine using a naso gastric tube. I have had the all clear from Crohns. I have never used the diet, I love my food and for me and for me I have coped ith mouth ulcers for so long it is sometimes worth it so I can eat the food I like. Luckily my lips don't swell, i just get mouth ulcers on my gums and the back of my throat up to 50 at a time. Only certain things make my lips swell (pepsi). Now I know about the diet I try to stick to it when my ulcers flare up, but am not strong enough to stick to it all the time! Also,no-one ha ever actually spoken to be properly about the diet. I just have info off then internet. At the moment I go for annual check ups with the dental hospital.

x

I was diagnosed on Glasgow and they said straight away they knew I had it there was no need for a biopsy and put me on to the diet the same day I was diagnosed, it's seems like it is helping but it's keeping to it I have been struggling with x

Hi Lauren, like you Jason went to the dental hospital and several people looked him over and in the end OFG was diagnosed, no biopsies were taken as every symptom he had ie swollen lips, cobblestone appearance inside of his cheeks, occasional ulcers when he has bad flare, red and tender gums also.

He was then referred to the bristol children's hospital and has recently had a colonscopy checking his oesophagus downwards and another procedure checking his bowels upwards. Because not all areas can be reached with scopes he also had an mri last week. They also took several biopsies whilst Jason was under and everything has come back clear with no problems.

The consultant has said there is medication that Jason could try in the future but we're trying Modulen food replacement at the moment just to try and get his lips down as much as we can then reintroduce food. He is really struggling at the moment. They do say that some people can get crohns internally years later, but some remain lucky.

Also forgot to say watch out for medicines as lots of these contain benzoates, I've recently had to bin some. Also watchout for e200 numbers too.

Best of luck x

Lauren, please don't worry about the scopes they do them whilst children are asleep here in Bristol. We were home by the afternoon and Jasons throat wasn't sore or anything like that, and to this day we haven't told him that his bowels were checked too. When he woke he felt fine and managed to down squash, sandwich, crisps followed by icecream!. X

Lauren, I would try to avoid tomato purée and tomato sauce as my doctor told me this really aggravates ofg! It's not the actual paste/sauce itself, but the way it's made seems to cause a reaction. Maybe avoiding this will help? I know it's hard to avoid foods, but after a while it will become natural. And Jo, I have crohns as well as well as ofg and I swear by using modulen. I've had to go on modulen for 6 weeks with no food and introduce food over 4 weeks afterwards. It helps so much and not only brings my inflammation for crohns down to normal, but helps my mouth a great deal too, almost like it was never there. I have one cup a day, and have problems now and again, but the injection I had and this mostly keeps it under control. I hope this works for Jason, and it's good news he doesn't have crohns!

Ellie x

Oh, another thing is before you eat fruit, make sure you wash it. Sometimes they're sprayed to preserve them/ make them taste more appealing. It's the little things sometimes which can catch you out

ellie x

Thank you so much all of you! I have been sticking to the diet and nbeen on a lot of medication too and had to come off a couple of them but I'm just have to wait and see now back to the dental hospital on the 23rd of may. Thank you all so much! Much appreciated

Lauren x

Thank you so much all of you! I have been sticking to the diet and nbeen on a lot of medication too and had to come off a couple of them but I'm just have to wait and see now back to the dental hospital on the 23rd of may. Thank you all so much! Much appreciated

Lauren x

Regarding beauty products, I was given no advice so have just gone through and checked everything that I use (hairspray, perfume, moisturiser, shampoo etc.). On the diet list that I have it just mentions 'some sensitive deodorants' but I've found that the majority of the products I use have some form of benzoate in them. I've found health food/organic shops to be quite helpful in finding replacements. The only thing I've not yet replaced is my make-up. Does anyone have any advice for good companies?

Chocolate was a hard one to give up but I've been trying 'raw chocolate' recently which I don't think is making my lip swell, or at least not as much as normal chocolate. On my list it says 'pure cocoa' is fine and as far as I know raw chocolate doesn't go through the same processing as normal chocolate which I think makes it okay to eat?

Also regarding medication, what were you guys prescribed? The only thing my dermatologist has tried with me me eumovate steroid cream.

Emma x

Hi All

Just an update from me. I have spent the last ten days following the diet and using some medicines provided and i have seen such an amazing improverment. All my friends cant believe the difference and i have no sores in my mouth and i have feeling in my lips again.

The doctor at the dental hospital gave me Daktacort mouth gel to use after i brush and Daktacort ointmnet for my lips.

I dont know if its the diet or medication but its amaze!

I miss chocolate, gin and tea the most. But having Haagan Daaz natural vanilla ice cream instead. Thinking of getting some natural tea leaves!

Good luck everyone with the diets! its so hard. Especially on nights out and meals out! and in the office when theres chocolate everywhere!

If anyone has any good recipies for meals i can prepare and freeze please share!

xxxxx

Hi All,

my daughter was diagnosed last April and placed on the cinnamon & benzoates free diet, but we were also told to avoid citrus too.

We have had good results with the diet, but it's most effective when we are extremely strict! That means all toiletries, soap powders and food! She was given prednisol steroid mouth wash but it's not effective as its full of benzoates!

There is a newer version of the diet available from Guys & St Thomas' hostipal via a health professional, it's a bit more detailed than the one on the Internet when you google c&b free diet.

I'm a member of a Facebook group for OFG suffers and have picked up lots of hints, tips and advice from fellow group members. The most common treatments among the members of this group is the diet and immunosuppressants also liquid diet such as molden or elemental.

Annette24 - Guys hospital in London is a leading centre of OFG, but as you son is 15 you may prefer a children's hospital. My daughter attends Alderhey in Liverpool and see an Oral Consultant and a Gastroenterologist,her lip biopsy was inconclusive but the are still diagnosing her as OFG. They also advised us that 1:3 cases of OFG will progress to full Crohns by adulthood.

Hi Ruthyneilo would you be able to tell me the name of the facebook group as I would like to join. Thanks for the info re hospitals but we live in Australia.

Wishing everyone the best outcomes with their OFG. We try to stick to the diet but find it extremely difficult so we do it the best we can.

cheers

Annette

Hi Annette

the Facebook group is UK based and called

Oral Crohns Disease (Orafacial Granulomatosis - OFG)

Hope you find it, I would have been lost without it

I've found lots of info from Australian Web Sites so hopefully you will find a good hospital soon

Ruth x

Good morning,

Thankyou for the Facebook details will try to join group if I can find it.

Annette xx

I am so pleased to have stumbled across this website. My 7 year old daughter has just been diagnosed with OFG. Before confirmation we were advised by our consultant to follow a cinnamon and benzoate free diet. We have also been advised to add Sorbate into that as well.

My daughter has received patch testing which highlighted a severe reaction to chocolate - which ironically we gave to her thinking it was healthier than jelly sweets due to colourants etc!! I do admit that her upper lip is not swelling as much as before but it is still happening. We are still awaiting referrals to Oral Health but she has never complained of any soreness within the mouth.

Just a couple of questions -

* does everyone that have OFG go on to receive a diagnosis of Crohns at some point?

* has anyone found an ice-cream that they can eat as this is her most fav food product and do people tend to avoid citrus item?

Many thanks for any replies and again I am so pleased to have found this thread. xx