Orofacial granulomatosis - Crohns disease

Just found this forum - great resource. I'd like to contribute something positive.

My daughter aged 11 was diagnosed with OFG a couple of months ago after a lip biopsy. Not Crohns as she had all the tubes and MRI scans. She embraced a cinnamon and benzoate-free diet enthusiastically.

As with jen999 it was almost magical. In 12 days the splits in the corners of her mouth had gone, the lip swelling was almost gone, and the ulcers almost completely gone. She stopped being sick regularly. After 8 weeks she's almost symptom free.

She gave up chocolate and pizzas, the two things she really liked. (We adopted her and when she came she had eaten entirely rubbish all her life.) We gave her an almost entirely fresh, organic diet. The school helped enormously, the cooks seeing it as a challenge.

We had a mild problem last week on holiday. We got a substitution in a home delivery - not ORGANIC sausages. We foolishly didn't read the label carefully and she flared up. They had nutmeg in them. Of course we can't be certain that was it. But 6 days after, the swelling has gone down again.

People refer to THE C&B -free diet, but there seem to be several. We were given one by the John Radcliffe, Oxford but have found 2 more. We have adopted the approach of avoiding anything that's on any of the lists. One feels a bit of a nit reading the back of every packet in the house/shop, but after 8 weeks we are really good at it! I do admit it's a real pain at the start. We are starting to work on a range of meals she will eat. Suntan lotion is impossible, but luckily she's mixed race!

One of the things that really annoys me is that the EU allows the word "flavourings" on contents; it covers a multitude of cr*p that shouldn't be allowed anywhere near a human being. I used not to be a food nazi but I'm rapidly becoming one. (Rant over.)

My daughter is really pleased with the results of the diet and now says she doesn't want chocolate ever again.

I have read somewhere that 70% of OFG sufferers respond well to C&B-free diet, so there is hope. But I fear a totally dedicated regime may be necessary.

Hi Bob74 with regards to sun lotion Badger Balm Products and Green People both do sunscreen that is c&b free, however the green people one contains citric acid. We have been told to avoid this for my daughter. Many of the people who post on here are numbers of a closed Facebook page, which has lots of great hints, tips, shared experiences and documents you may find useful. My daughter is 11 next week and was great on the diet to start but has struggled as of late, as she is still getting ulcers even though we follow elimination of citrus, cinnamon and benzoates.

With regards to pizza, which my daughter also loves, Wrights Flours are leading suppliers to the fresh pizzerias, their flour is unbleached and fine for OFG suffers, with a garlic butter base rather than tomato, and a plain topping, she should be fine. Chocolate - Marks & Spencer's white chocolate with vanilla and Lindt 70% cocoa are ok as they do not contain lecithins. Also and chocolate themed products that do not contain lecithins and benzoates, but are derived from a cocoa base should be ok too.

Hope this help with a few treats, because this has to be the worst restrictive diet for children.

Dear Ruthyneilo

Thanks, that is most helpful. Unbleached flour was my next search item today.

I am not of the Facebook generation; how do I find where the page you refer to is?

Happy Birthday to your daughter next week!

Bob

Hi Bob

The previous post with the Facebook reference is on pg2 towards the bottom.

Dove Farm also do unbleached flour, technically speaking all flour milled in this country and Europe should be unbleached as its a European Law, but it's impossible to enforce that's why the big bread manufacturers didn't give me a response to any emails I sent them. Wrights flours product development manager gave me this information, so I presume he knows his stuff!

Asda provided me with a list of products from their bakery which are all manufactured using unbleached flour, this too is up loaded to the Facebook site.

It might be worth joining Facebook if only for the page, I have found it invaluable, for information and support. Also it's a closed group so only the members can see what you post on the wall. The administrators are very good and tend to delete any disingenuous members!

We've only been following he diet since last April, but as you said you do get good at it quickly, so if you have any other just post!

Can I ask which hospital you daughter attends?

Thanks for the birthday wishes I will pass them on!

Ruth

Dear ruthyneilo

She attends the John Radcliffe Hospital in Oxford. The nutritionists there are very helpful. Her consultant is excellent at motivating her.

Bob

Hi, I have orofacial granulomatosis. I was tested for Crohns too but that proved negative. I follow a strictly benzoate-free diet and have found it helps enormously. When not following the diet I would have rectal bleeding and other Chrons-type symptoms but when eating only benzoate-free foods my digestion is well-nigh perfect. I find when I eat something that contains benzoates I get very sleepy and the granulomas swell very quickly indeed. Long term eating of the wrong foods gives me very painful split slips and mouth ulcers.

I have actually started a facebook page to share some of my recipes and other tips. It can be found at https://www.facebook.com/BenzoateIntoleranceSupport if anyone wishes to take a look. (Moderators please note this is nothing more than a page to help people with the same dietary problems.... it is not a business, there is no charge, I am not soliciting for business or promoting my own company.... it's just something fun, so that I can see if others have found better solutions to 'missing' foods than I have.) Thanks and feel free to look me up!

Please come and join the 'Orofacial Granulomatosis Support Group' on Facebook. This is a supportive forum to share your personal stories and advice, ask questions and feel part of a supportive community.

See you there.

hi all

im only on here and there is some good info my 7 year old son has just been told he has ofg

has anyone got a list of sweets or foods he is aloud to eat ,hes on the cinnanon and benzate

diet. hes had as hell telling a 7 year old that hes not aloud to eat that.

cheers

tommy

The OFG group on Facebook is very active and full of good tips. I'm not sure how to point you at it: https://www.facebook.com/groups/71989484120/ might work.

My daughter was 11 when she got the diagnosis and she just accepted it. But 4 years is a big difference. We all gave up sweets too in solidarity and I for one am very pleased I did.

Bob

Hi tom,

As a rule they say not to eat chocolate with soft fillings. Most can't eat chocolate, but you could try green and blacks chocolate as my professor told me some of her patients tolerate it, others dont (like me.). I've noticed when I have a flare up, foods that I can't eat will sting much more than those I can. Keeping a food diary will help eminimate what foods he can't eat.

As far as sweets go you could try haribos and jelly babies (I can eat them). I can't tolerate any of those sour type sweets. You can try fudge as well if he likes it. You can make homemade cakes / cookies, that way you know there's no colourings/preservatives in them too. Can he eat biscuits? Shortbread is a good option as they hardly have any ingredients in them.

Cinnamon and benzoates free diets really do help, after a while he will adapt to the new diet, but i should imagine it is hard at that age. I hope this helps you, but everyone is different and he may be able to tolerate some sweets that I can't eat, I'm going on advice and experience. Best of luck, I hope he feels better soon.

Hi Everybody,

I am 28 and have recently been diagnosed with OFG with a negative result for Crohns. I think I must be pretty lucky as my symptoms aren't as severe as what I have read on previous posts. Just some ulcers and and a little bit of face swelling on my right side. I am interested in doing the C and B elimination diet but am finding it difficult to work out what foods have benzoates. I was wondering if anybody on this forum is from Australia like me??? I think most of you are from the UK. Our food labelling does not seem to be as detailed. I already know that chocolate is a trigger for me but I ignored it for ages as I did not realise the connection until I had the diagnosis of OFG. I just attributed all my mouth issues to wisdom tooth pain. Hehe! How wrong was I! Now I guess I have to live a chocolate free life. Yuck! Thanks everybody for your help.

Hello everyone. I was diagnosed with OFG in March 2014, diagnosis confirmed by biopsy of lower lip. This is a very frustrating illness. I live in the USA and there is limited info here. I tried the diet for a short while and it did nothing for me. My main symptoms are very swollen lips, lower worse than upper and my face and neck are also swollen. I've tried antibiotics and topical steroid treatment and neither helped. I have conflicting info on the intralesional steroid injections as one of my dr says "do not do it" and another says "try the intralesional steroid injections before we go any further with treatment". There are NO doctors around, including within a 8 hour round trip of driving - still no dr that will do the injections. I read a report from June 2014, in which a patient was given an immunosuppressant and it resolved all her symptoms. 

At this point I am very discouraged. I feel like crap all the time. I look like a freak and people of all ages stare at me everywhere I go. 

Has anyone on here taken immunosuppressants and did it help? 

I also suggest the Facebook group for orofacial granulomatosis, lots of good info on there.

Thank you for starting this group and I am sorry to everyone who has this dumb illness.