Lipoprotein Lipase Deficiency (LPLD) Community

Meet, discuss & support other patients or families living with Lipoprotein Lipase Deficiency (LPLD). Contribute to topics, or just share what's on your mind.

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Can LPLD lead to a stroke?

I am a 62 year old male and have been suffering from high triglycerides for the past 10 years. I am always having pancreatitis as well as enlarged liver. My triglycerides typically run around 1900 - 2200. My family physician has had me on medication but nothing seems to lower my trig. He said I am a train wreck waiting to happen. Can this disorder lead to a stroke or heart attack? Am I in danger of dropping dead in an instant? I do eat a lot of junk food and I drink beer. Would changing my diet help me any?

Changing your diet is the best way to lower triglycerides, especially if you have LPLD! As far as I know, just having LPLD does NOT increase your risk of stroke or heart attack, but in a roundabout way, it can increase your risk of diabetes, which in turn increases your risk of those. At the very least, cutting down on your fat intake in your diet will definitely decrease your pancreatitis attacks. Pancreatitis can indeed by deadly, on top of how painful it is!

Hi,

If you are having LPLD, then you are having it for 62 years now. If LPLD leads to heart attack or stroke, it won't wait for so long.

That said, I do recommend you to change your diet and limit your fat intake. In this case, we want to avoid pancreatitis. We don't want the acute attacks to damage the pancreas too much so that acute pancreatitis turns into chronic.

I am a LPLD patient who suffers permanent damage of my pancreas and you don't want to head this way.

:D

https://www.facebook.com/fightFCS/

Hi,

If you are having LPLD, then you are having it for 62 years now. If LPLD leads to heart attack or stroke, it won't wait for so long.

That said, I do recommend you to change your diet and limit your fat intake. In this case, we want to avoid pancreatitis. We don't want the acute attacks to damage the pancreas too much so that acute pancreatitis turns into chronic.

I am a LPLD patient who suffers permanent damage of my pancreas and you don't want to head this way.

:D

https://www.facebook.com/fightFCS/

Lipoprotein TESTING

Hi, I was wondering if anyone has had some sort of test done in regards to this actually illness. I had a test done around 6/7 months ago but they still haven't received the results. It takes a long time to get the results apparently..

Hi, I did the test for the following Genes
LPL, APOA5, APOAC2, LMF1 and GPI-HBP1 and the defect was only in APOAC2 gene. According to what I understood from my doctor, my body produce the LP lipase but it is not active and the APOAC2 is in charge of activating the lipase. Note: I did the test in london end of 2015 and was diagnosed in 1984.
My doctor prescribed Lopid 600 for me but i sure it has zerof effect so i stopped since there was no change in my TGL.

jill
moderator

Hi Rayaad, do you manage to keep well and how much fat do you eat each day? I'm curious to understand the differing levels of ability to metabolise fat we all seem to show,which I can't help but think must be down to which genes are causing the problem. When you were diagnosed in 1984 what were you told you had and which hospital were you seen at? (Sorry for all the questions!)

Hi Jill,
I am originally from Sudan and my father was doing his residency at London hospital which is the place where i was diagnosed with hyberlipidemia tybe 1 when i was 3 years old. We moved back to Sudan after one year and i was on strict diet of 15 g of fat per day. As for now, i am not that much responsible in keeping strict diet due to the nature of my work where i travel almost every week however when I am home i eat a max of 20 g per day. I did a test 2 years where it showed that my body produces the lipase and i always thought that i had a bad LPL gene so this is why i went to London by end of 2015 to do the genatic testing. I went back to my docror in Saudi Arabia (where i am living now) and showed him the result and the defect in APoac2 and he prescribed for me Lopid 600 as i mentioned earlier. I tried to google and researche if Lolid works with my exact case (APoac2 defect) with no luck. On anonther note, i can not get my TGL these days below 500 no matter how hard i tried to stick to my diet.

LPLD and pregnancy

I was diagnosed 2015. Till then I didnt know. Before that my pregnancy was very complicated but managed in ICU. Then I got pancreatitis and was in ICU. Now I am on drugs.... diet of course....tight ....

jill
moderator

Hi Dinithi, that all sounds very scary. I hope you and your baby are now doing well?

I'd love to know a lot more about the circumstances of your diagnosis, how you're managing with the new fat restrictions and what drugs you are on.

I see that you're from the UK. It would be good to know whereabouts and which doctor you are seen by.

Also, how did you find us?!

If you'd rather not answer these questions on the forum then please add your email address so that people whose 'friendship' you accept' will be able to contact you privately.

Jillx

jill
moderator

Hi to Dinithi

Welcome to the community Dinithi.

It would be great if you could share some information about yourself and your interest in LPLD.

Looking forward to 'meeting' you.

Jillx

Familial Hyperchylomicronemia in Spain

Hello, my name is Rosa. I was diagnosed with familial hyperchylomicronemia when I was 8 after I suffered pancreatitis. Today I'm 41 years old and have suffered 10 pancreatitis attacks so far. I follow a strict diet and I take omega-3 supplement prescribed by my doctors. Hopefully more specific drugs will be discovered

Hola Jill
Por supuesto que puedes agregar la página de facebook. Cuantos más seamos mejor.Asi podremos intercambiar información de esta enfermedad y sus posibles tratamientos. Ademas me gustaría que participarais con vuestras experiencias y comentarios. Daremos de esa forma a conocer la enfermedad a la sociedad.
Un saludo

Hola Rosa,

We are from Argentina and my 7 year old daughter has been diagnosed with LPLD. There is very little community awareness down here, so I will be glad to participate in your forum in espaniol!

We are using a Lab in Valencia to do genetic testing to confirm Julia's disease.

Suerte y saludos

Matias

Hola Matias.Me alegra que se una a mi página de facebook.Seria genial que alli nos diera su experiencia con esta enfermedad para así hacerla más visible a los demás
Está ya Julia diagnisticada de Lpl o aún tienen que confirmarselo en el análisis genético?
En cualquier cosa que pueda ayudar no duden en contármelo.
Me alegra conocer más personas con el mismo problema ya que es una enfermedad muy poco frecuente.
Saludos y Feliz Año

MCT oil

We've gotten by without MCT oil to this point, but I just realized how mainstream it's gotten (people eat it as health food! wow!) and therefore easy to obtain. Before I buy my first bottle on Amazon, how do you use it? Do you still restrict yourself on it, or do you eat as much as you want of it? Can you fry a whole batch of chicken with it and just eat it all, or do you still watch your intake to some extent?

Hi Rachel, I think I tried this when I was younger but I haven't heard of this at ALL as an adult. I'm curious too, I hope someone posts something so we will know how to use it. It's a little scary to try :)

sandyketronvowell
moderator

I was given MCT oil through NIH to use when needed/wanted.
The MCT oil is still to be used sparingly. If you take too much, you get the diarrhea symptoms. It is still fat, after all.
But used in moderation, it is the best substitute when oil is necessity.

I grew up not eating any fried foods.
What I hated most as a 'youth' in school? Being denied McDonalds French fries! ;)

Mom used shake n bake chicken on skinless white meat.

But I do love fried chicken. I'm from the south you know! And so I will eat fried chicken out BUT I always take the skin off. Chicken doesn't absorb fat like beef does. So it's relatively good and acceptable for me. Of course I can't do the boneless breaded. Like Chick-Gil-a etc because that coating doesn't come off.

I need help understanding Lipoprotein lipase Defeciency syndrome

Hi, I am trying to compile a list of foods that i can not eat and foods that will help my illness. can anyone help me.

This was one of my biggest struggles with my daughter's diagnosis, I would get caught up in how many foods she couldn't eat. I've posted a bunch of lists of nonfat foods that you can eat on my web site, http://lpldeficiency.blogspot.com/ as well as some of our favorite family recipes. Hope that helps!

I have a blog where I share recipes and foods that work for us:

lpldeficiency.blogspot.com/

Some posts that specifically list some foods you can eat are:

lpldeficiency.blogspot.com/2016/05/surprising-nonlow-fat-life-savers.html

lpldeficiency.blogspot.com/2015/12/dessert-ideas.html

lpldeficiency.blogspot.com/2015/12/snack-ideas.html

lpldeficiency.blogspot.com/2015/11/recipe-index.html

lpldeficiency.blogspot.com/2015/11/what-can-I-order-at-restaurant.html

SandraRC
moderator

Hi Rachel,

Thanks for sharing these links here. I am sure others will find it useful.