Vlcad diet is sooooooooooo hard!!!

I just recently got diagnosed VLCAD...I became paralysed from hips down for over half a year I was in a wheelchair, I have al sorts of tests done on me but they couldn't figure out what I had, I was 19 at the time I went through a lot for 2 years I'm 21 now and the DR just diagnosed me 4 weeks ago, they are still questioning Mcardle Syndrome...if it was up to the doctors they still wouldn't know what was wrong with me it's all down to my mum she gt me transferred to Manchester hospital and I have been under their care for a while, I faint and vomit quite a lot, I'm still trying together used to my diet it's hard I'm a chocoholic and the fact that I can't have any chocolate or sweet things anymore its very very difficult, I would appreciate any help any one would like to offer....thanks
Kuri786 Kuri786
18-21, F
5 Responses Jan 16, 2013

Hi please join our organisation we can support you, I have vlcad myself and set up a support foundation. you will find us on facebook called the metabolic foundation. thank you.

Hi Kuri I was diagnosed with VLCAD 2 years ago at age 30 after having my second son- my whole life has changed a lot and I may have done diet tips. Please get in touch many thanks

My diet is very hard seen as I am addicted to junk food I get seriously ill I collapse sometimes....I haven't had an episode in a while.....subhanallah

Thank you for getting back to me, How long have you had VLCAD? I hate my diet to cos I love my savoury food. I've just come out of hospital again from another relapse after a mosy bite that went nasty, and this cold weather is affecting me. Do you know anyone else with this condition? I thought I was never gonna find anyone, can I ask what medication you take? I take bizafibrate (to break down lipid in the muscle) carnitor ( as I'm missing that fibre in my muscle) mct oil ( high energy oil) I now take a mini pill as my hormones were also affecting me to relapse but when I relapse I use polycal ( high energy powder) sorry for the long message but I just feel nothing works and I have so much muscle damage and weakness that I'm now in a wheel chair when I go out as I can only walk about 50 yards and find the last 2 years have been so hard. Regards Gemma

My Granddaughter has VLCAD and when she eats too much fat she throws up too! She LOVES chocolate too! We found Fat Free Chocolate Pudding, Nabisco has Fat Free Chocolate Cookies and Reily "No Pudge" Brownie Mix is delicious! She also eats Bryers Fat Free Chocolate Icecream! She also LOVES Cheese so we get Kraft Fat Free Shredded Cheddar and Mozzarella Cheese. We make her Pizza with the Heart Healthy Prego, On whole grain bread rounds with Fat Free Cheese! Also Tortilla's with Cheese for Cheese rolls. I hope this helps! I have eaten all of these things too. They are good!

Debbie

I have seen a lot of sweet things which would help my diet bt they are all not suitable for me I am a muslim so I am not allowed certain foods

I don't have a diet yet. What is the diet (or do's and dont's you were given?

I'm not allowed anything dat is over 0.5 grams of fat wich is nothing...I am only allowed 20g of fat a day....I need to have a few sachets of glucose....have skimmed milk...and loooooooads of sugar to keep my energy up and walnut oil

Hi sorry to hear of your troubles, I have to say looking at other folk on here I am EXTREMELY lucky as generally I experience no symptoms.

As for any help I don't really know, I know that the Professor I'm under at Newcastle and his team are very good he's called Professor Doug Turnbull, I've posted a link to his bio in case you wanna check him out.

http://movelab.org/team/doug-turnbull/

im under dr hendriks and dr robers in salford deyr amazing dey really take care of me...da best thing is theyr really fast....n ma dietician is really nice she rings me awl da tym jus 2 say hi and c how im doing

thanks....wen did u get diagnosed and wat things are u alowed to eat?

To be honest whatever I like, I should stick to a low fat diet, and generally I do but not that strictly