Orafacial granulomatosis

Hi

He should be ok with 7 up drink but not allowed sprite.

I take it hes on a cinnamon and benzate diet.

He hasn't been told to follow and diet just told not to drink any fizzy drinks the doctor that he is under said he doesn't know much about OFG so not really getting that much help with it

Hi

My young lad of 7 has it sorry 8 it was his birthday yesterday

Hes aloud 7up. He has ofg. Cinnamon and benzoate free diet

Hes not allowed chocolate at all . Carmac bars are ok. We too are

Learning about it to.

Plane food chicken, potoatos .

Hi,

If your son has been diagnosed with Orofacial Granulomatosis, it is important that he strictly follows an Elimination diet which avoids certain drinks, food stuffs and medicines containing Cinnamon, Cinnamal and Benzoates (E201-E219).

Check the ingredients labelling on all food products to ensure that your Son doesn’t eat any which contain Cinnamon, Cinnamal and Benzoates (E201-E219).

Cinnamal is found in some toothpastes, so be sure to check that the ingredients in his toothpaste do not include Cinnamon or Cinnamal.

I, myself contracted Orofacial Granulomatosis last year and eventually found the cause to be Cinnamal contained in my toothpaste, (Oral-B Pro-Expert Clean Mint).

The symptoms subsided over several weeks and the problem has not recurred.

Hi,

Do you know about the Oral Crohns Disease facebook site. It has a lot of information and diet sheets and a

link to a support group site with recipe ideas. I have found it really helpful.

Hi

Thanks for all your feedback and yes I have not added the Facebook page and found it very helpful.

Hi folks- have been living with OFG for 20 odd years and the elimination diet definitely works but doesn't get rid of the cause.  I recently had my amalgam mercury fillings replaced with composite and the difference after a couple of days was palpable- the swelling in my face had reduced and my the bleeding from my gums when brushing my teeth stopped completely.  Early days yet for other issues so still following the elimination diet.  BTW- the comment above from Leo123 is comprehensive but the benzoic acid E numbers start at E210 and not E201...might give you a few options back. 

Hi. As this post is a few years old I am hoping you can give me some hope.

My 16 year old son has recently been diagnosed and been prescribed azathriopine. It scares me and wonder how your son got on?we had heard about steriod injections but been told they would not recommend them.

Thanks in advance