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 am sorry to hear that you are struggling to follow your new dietary restrictions. It can be hard to accept sudden, new limitations. As a person with narcolepsy I have certain restrictions when it comes to food because eating triggers what we call "sleep attacks". So I have to eat before events and make sure I have enough time to nap before I leave. In your case, it might be helpful to make sure that you are eating before events so you aren't as hungry during the actual event. And bringing food with you that you CAN eat just in case you get extra hungry. Of course, it's important to check with your doctor before making any new changes. They might have good advice for these scenarios! Also, I understand that this must be a difficult new change for you. It's been a few months since you posted this, so I'd like to check in about how you are dealing with this now? Wishing you the best. Warmly, Tatiana (raredisease.net Team Member) This might be of help to you. I have a problem with Methionine )an amino acid in protein) and follow a low protein diet). Do you have a tollerance that is set by a dietitian. Are you taking a medical formula? Are you on medical foods? I would love to talk with you.
https://www.osmosis.org/answers/phytanic-acidThank you for sharing this resource of what you think might be helpful! What kind of rare disease causes a methionine metabolism problem? I am interested to know if you are interested in sharing. What kind of foods do you have to avoid on this kind of diet? Are people around you understanding when it comes to your dietary needs or do they minimize them? Thanks for sharing! Warmly, Tatiana (raredisease.net Team Member)
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)
