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
Thanks fingers crossed it looks good right now. If it weren’t for COVID it probably would have already been approved. They had to stop then.
, oh goodness, the fly in many jars of ointment! I'm glad it is looking good! Let us know how it goes! - Warmly, Donna (Team Member)
I follow a low protein diet. A lot of the foods that have phytanic acid in them are high in protein also. Try a plant based diet if you have not been prescribed a low protein diet. Low protein diets normally involve medically prescribed foods, and a medical formula. Good news for me I am on a clinical trial that may allow me to raise my protein level.
, best of luck with the trial! If it works for you, will you be able to continue the medication between the trial and the release of the drug? - Warmly, Donna (Team Member)
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)
