For the past 5-6 years I have been suffering from constant ulcers in my mouth and throat, it was so bad my face would swell up, I couldn't eat, drink, speak or swallow without pain. After many years of doctors and dentists having no idea what was going on I was finally put onto a Cinnamon and Benzoate free diet. It seems to be working and I have been on it for about 9 weeks now. I am glad its working however there are so many foods I cant have. I cant have anything that says "flavours" on the ingredients list unless the E numbers are listed and E numbers E210-E219 are not present. I cannot have any berrys, tomato pure, concentrated fruit juices, squash, chocolate. Anything that contains natural or artificial benzoates (preservatives), cinnamon or soya. I am really struggling to find foods I can eat. Especially sweets so please anyone who is also on this diet please let me know what you eat and any brands that are good. I really want to find some snacks that are great to eat, I really like sweets however as all that I have looked at have flavours even natural flavours do not list the E numbers present or contain the E numbers I cant have I have not had anything sweet like in 9 weeks. HELP!
P.S. they thought it may have been Crohn's disease and it is still not ruled out.
The meals I eat are Pasta with mince beef in chopped tomatos, cottage pie, cheese pasta, eggs, ham egg and chips, burgers. All have to be home made with no ready made sauces. Im 17 and its really difficult being a student having this problem
Hi I have had crohns for over ten years and haven't had ulcers in mouth,once when they were giving me some bad medication that was attacking my vile,and one doctor told me to get off that at emergency so sorry everyone is different taking your meds and try red foods I went realy well on pumkin so keep looking at your diet good luck rose
Dear Binxy
Just seen your question hope this will still be of some help. I have OFG as well and have been on the diet for over 3 years. I got it from Guys Hospital who lead research on this problem. There are loads of things you can eat OK. I eat fudge as a sweet - avoid chocolate. Once your sore throat has gone you can drink orange and apple juices - choose pure not from concentrate types. I can send you the diet sheet by email if you want.
Patricia
hi patricia. my daughter who is 6 years old has just been diagnosed with OFG at chelsea and westminster hospital. she should be on a benzoate and cinnamon free diet, which is difficult at her age and I have 4 other children who can eat anything. of course she also have a nut and raw egg allergy and asthma and eczema (she got the whole lot!) now the hospital has given her a nasal spray which contains benzalkonium and I'm unsure whether to give this to her or not. hillingdon hospital is saying it's ok as it's very diluted and I have just emailed dentist at chelsea and westminster to make sure. do you know anything about this?
also I read in the first question that the person couldn't have soya, does soya milk contain benzoate? my daughter had a milk allergy and was on soya milk, she is now clear of that allergy but likes soya milk better than cows milk.
one more thing, sorry! if you have a diet plan that I could have that would be absolutely amazing
sabrina
hi hanna. I attach pages 2 to 6 of the diet sheet. Page 1 says 'A cinnamon and benzoate diet for OFG'. All useful info is on pages attatched. I don't know the answer to your questions but I think you will find the sheets useful. Had to convert to jpg as options limited in this forum.
Patricia
hi patricia. thanks so much. already had that plan from the dentist and found it to be useful. just waiting for my dentist to respond but shes away until next week. would have just thought that general practitioners and nurses were more informed than they are. with all the reading I'm doing now and reserach I could be a children's doctor myself lol. you learn a lot when you have a sick child. thanks again for your help. sabrina
I am new to the blog. My son has OFG and I am debating on Remicade infusions vs homeopathic options. Could I have a copy of your diet sheet to? My Dr. only support drug remedies. :-(
Were you ever prescribed any drugs for your daughter and for her OFG? What were they? Were they effective?
What homeopathic options have you tried?
hi Mylisa, diet sheets pages 1 to 6 attached. I found this helped within days however it takes at least 4 months for benzoates to clear the bloodstream and even longer for gums to revert to their normal state.
Thank you! I will hopefully convince my son to give it a try.
Hi Patricia
I just read your story and also my 11 old son it's been diagnosed with OFG and also with a mild Chron's , also we live in aCanada where cold and long winters makes even harder on his lip swealing .I try to eliminate most of foods that contain benzoate or benzoic acid but i would like if you could email it to me that list you just mentioned above so i can compare to ours and it could help.I appreciat in advance..
Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
hi daliborka
This is the diet from Guy's Hospital in London. I have converted to jpeg as options limited on this forum. It has worked for me. Some of the diets on the internet are rather over prescriptive by comparison.
I'm seriously in need of the list of foods I can eat to at least reduce the pain I go through when I have flare ups
hi victoria
Are you refering to Crohn's flare ups or OFG? The foods to avoid are quite different.
Hi Patricia,
I have deleted your latest post - you do not need to keep uploading the diet images, just say look further up this thread to view. If there's any confusion about viewing the images users need to click on each of the thumbnails in the post above to view the images full size.
Regards,
Alan
Hey Pat, I am sorry for any inconveniences I might have caused for the deletion.
Could u email this to me at crazyfarm50@gmail. Com plz
Thank you so much for this diet - I was diagnosed with both Crohn's and OFG when I was 13 - while I do not have any Crohns symptoms (thank God) I still suffer the most with OFG and foods. I saw a nutritionist when I was younger and was put on a diet very similar however I am now 25, the diets since been lost ! It used to affect my top lip when I was younger and then switched over to my bottom lip and in the past couple of weeks, it has changed back to my top lip ! I have had gum surgery as my gums had swelled so much they stayed permanently that way and covered a massive chunk of my top teeth. I want to go back on a diet similar to the one you posted to see if that will help me again - I have been eating as healthy as possible these past few months as I am trying to lose weight so think I might make a big pot of soup (based on ingredients on the posted diet below) for the week and see how I go !
Thanks again for the diet jpegs !
-Mikayla