Dietary Changes
Hi,
I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an elevated level of phytanic and pristanic acid in my system. I have been advised to follow a low phytanic acid diet and now have five pages of dietary requirements to follow.
Today is the first day since my diagnosis a month ago that I have just felt completely overwhelmed by it all. I guess I have had the realisation that this is my life forever, That I will constantly have to check what I am putting in my body and that is pretty exhausting.
I think it is particularly hard in the run up to Christmas which is such a food orientated time of the year (I live in the UK)
Does anyone have any tips for dealing with this?
Thanks
Jo
I'm sorry that you're going through this. I have to follow a very strict diet due to reactive hypoglycemia. What helps me especially around the holidays, I tell myself I have a choice I can eat it and feel horrible and not be able to participate with my family and friends. Or I can stick to my diet feel well and enjoy my time with friends and family. So I just won't need it.
, that's a great philosophy. How long have you been dealing with reactive hypoglycemia? Has the strategy gotten easier to deal with? - Warmly, Donna (team member)
Hi Jo,
I’m sorry to hear that you’re struggling with this. Like Gina, I also have celiac disease and can definitely relate to the feeling of being overwhelmed by a lifelong dietary change. While it was overwhelming at first, I found that things did get easier once I got into a groove and found recipes, restaurants, and food that worked for my needs. I’ll echo the recommendation for a support group, but I think it can also be helpful to focus on what you CAN eat instead of what you can’t. Maybe take a cooking class or look for recipes to make your favorite foods with your new restrictions? I always look for ways to get excited about food.
Hope this helps. Please feel free to keep us posted.
Wishing you the best,
Jessica H (raredisease.net, team member)
Hi there. Thank you for sharing with us. Your post reminded me of when I was diagnosed with Celiac Disease and had to grieve what it meant for the years ahead...and, how it's especially challenging during holidays and times of celebration. I feel for you.
I googled low phytanic acid diet and see a number of web hits for this diet, but they seem to be connected with Refsum Disease. You might want to ask your providers if that diet is the same as the one they prescribed for you. If so, you might be able to find a support group online or inquire with local providers to see if they know of one?
I recently moved to the San Diego area and intend to find fellow 'Celiacs' before next year's holidays roll around.
Hang in there... glad you have no bad symptoms currently... hope the diet changes will keep you feeling good.Smiles and hugs,
Gina Miller
RareDisease.net Team Member
