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Orofacial Granulomatosis- My so has been put on an OFG diet as well as no dairy or soya, help!

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kim59000
kim59000

My son is 5 he has been put on a dairy, soya and OFG diet. We have only just started he is still getting ready bad cracked bleeding lips and ulcers which is 2 weeks after his initial diarrhea and severe tummy pain flare up. We seemed to have had everything under control on a dairy soya free diet for 6 months and then over Christmas he had a massive flare up. He had also just stopped antibiotics so I am wondering if this was a contributing factor. Anyway does anyone know if he is aloud gelatin, apple juice or red lentils as he had a sore tongue tonight. Feel so sorry for him as so much he can’t have especially at parties. If anyone has any knowledge of sweets etc he is aloud could you let me know. Baring in mind he can’t have dairy either!

0 likes, 2 replies

2 Replies

  • sarah44558
    sarah44558 kim59000

    Posted

    Hi my daughter was diagnosed with ofg and Crohns last year aged 7. She was put on a 6-8 week modulin drink with no food, which was really hard for her as it was over the school summer holidays but did amazing. This totally cleared her mouth up , then they introduced her onto the cinnamon and benzoate free diet. They gave us a list of what she can and can not eat, which had made a massive improvement. Might be worth mentioning to your consultant. Good luck
    • ossama13129
      ossama13129 sarah44558

      Posted

      Do you have the list yet? Because i'm from italy and here the doctors didn't tell me nothing of that.

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