PXE Veggie/Vegan Study

How does a vegetarian or vegan diet affect symptoms caused by PXE?

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My vegan experience

animal's picture

I am or was everything a PXE'er should not be.

I smoked, was overweight (still am) and my excercise consisted of lifting the tv remote to change the channel!

I was diagnosed with PXE when I was 23, I am now 41.

I had no adverse symptoms of PXE except my lax skin on my neck, underarms and thighs. I had my first "bleed" in my left eye, with no event, no bump to my head, no falling off a bike etc. After my first, I had a couple more (one in each eye), again, with no accidents or knocks to the head.

I noticed that someone had posted in the chat group that they had became vegan and had not had any symptoms since. I mentally thought that was interesting and thought no more of it. Two years ago, I became vegan myself - thats another story.

All I can say, is since then, I have had no syptoms. No bleeds at all, nothing. My eye appoitments are now 9months apart and I only really go for check up purposes.

I eat fruit, veges, dark chocolate, pizza and wine at the weekends. I make casseroles, stews, mexican food, sushi (vegan of course), curries and everything I eat is very tasty!

I go for more walks and have started pilates - thats my excercise. I truly believe, becoming vegan has almost put my PXE progression on hold.

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Vegetarian before to be diagnosed with PXE

Beverley's picture

I have been vegeterarian for almost 20 years now (eating fish). I start to be veg at 20, I was diagnosed at 30-32 I'm now 44.

I have been stable since, my skin, angroid in my eyes and leg pains. I saw on the facebook page, few become veg and they saw the change so I do beleive vegetarian diet has an impact somehow on PXE.

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Long tern pxe and vegetarian

Littlenatt's picture

I was diagnosed with PXE when I was 25. I am now 61 years old. I work internationally and this means I have had no consistent medical care. I have been a vegetarian for all of this time, and have always engaged in sport. I still run 10 km three times a week now. In addition to gym workouts.  I have the skin issues and lost sight in one eye, but have never let dominate my life. It is what it is. 

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Eating Green

Nik's picture

I have been diagnosed at the age of 19 now am 23. I believe staying positive and eating veggies is key to live a longer life. Havent experienced real major symptoms yet.

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15 yrs vegetarian

Robyn Matthews's picture

I was diagnosed at 2 yo, and ate a typical meat & 3 veg diet until around 18 when I moved to japan and adapted to a typical Japanese diet of minimal meat, lots of veg and variety and fish. From 25 I became vegetarian and still am now at 40. 

I have skin lesions on my neck and in my joints, peau de orange, angoid streaks and vascular claudication. However, even after 2 children I have no stretch marks and have had no advancement of my condition since I was 20. 

 

I attribute my diet, healthy lifestyle and positive outlook to be the key reasons behind my pxe remaining stable all of the years. 

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Diet Concerns With PXE

Dabblecat's picture

I was diagnosed with PXE in 2006 at the age of 49. I went to bed one night and woke up the next day and had color negative vision in one eye. A portion of my retina had been blown away by a major bleed. Three months later, I developed a cataract in my other eye and after the surgery to remove it, started having bleeds in that eye.

I grew up in South Florida, where I had a diet very rich in seafood and fresh fruits and vegetables. At the age of 6 I moved to Houston and then consumed a diet of beef and potatoes and processed foods. In my 20's, I returned to North Florida and lived a very stressful and a labor intensive life. My diet consisted of fast and convienient food, and it seemed like I lived on Pepsi. By the time I was 40 I was suffering from severe osteoarthritis and had chronic widespread body pain. After a car accident I was left with debilitating neck and back pain. Doctors did nothing to help me so I started researching pain and went on an anti-inflammatory vegetarian diet. Exactly three months after starting the diet I woke up blind in one eye. It took the doctors three more months to figure out I had PXE. Since the diagnosis I've tried many different diets and so far the only things I've discovered is there are certain foods that within minutes of consuming them I can see a bleed start in my eye, for example, I seem to have a problem with Omega 3 fatty acids. If I eat something with olive oil I see the bleed start in my eye, if I eat collard greens, I see it start as well. I can eat butter with no bleeds but it fogs my vision out, I can eat the "banned" trans fats with no problem in my eye. I have found that Vitamin C and citrus bioflavonoids lessen the fluid in my eye. This is just a few of the examples I have found with food.

When initially researching about PXE on the web, I read a study that said "proinflammatory cytokines MAY help regulate PXE." So I feel my vegetarian/anti-imflammatory diet may have worsened and inflicted my legal blindness. I now try and eat a balanced diet slightly higher in lean protein. I also had, for many years steroid injections in many different joints, now I just suffer in chronic pain and try to keep the fluid and bleeds to a minimum in my one eye. So is being a vegetarian good? I feel my eyesight was lost due to a vegetarian diet. But we as individuals will all have different experiences with this.

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Stacey Mokalis's picture

As  I have said before  I grew  up  in  South  Africa  and  I  followed  a  balanced  diet  until  the  age  of  at  least  18.I was  diagnosed  at  the  age  of 5.At  the  age  of  18  I moved  to  Greece  and  I  followed  a  mediteranean diet .I think I  changed  my  eating  habits  at  around  38 I  am  46  now by  adding  more  processed  food  and  junk  food  because  of  my  heavy  work  programme.I  felt  that  stress  and  fatigue combined  with  too many  dairy  products  and  almost  no  omega 3 in  my  diet  caused  my  first  eye  bleed  last  year.Since  February  2017  I  visit  a dietician  who  insists  on  more  omega3 and  green  veggies  in  my  diet.He  also  advised  omega 3 cod  oil as a  daily  supplement.Surprisingly enough  my  eye  doctor  saw  improvement  in  my  eyes!!I am really  afraid  of  losing  my  eyesight  so  I  am  very  careful with  my  diet.I  trully  appreciate  any  advice  offered!!!!

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Quality of diet

Wagamama's picture

I have been vegetarian and vegan for years.  I have better eye outcomes when I eat vegan and many vegetables, limit oils and fat, and maintain a lower weight.  Unfortunately for me, the cookies and ice cream and french fries version of the vegan or vegetarian diet doesn't help me much.  A study might want to have a qualitative component, since it is quite easy to be a "junk food vegetarian".  My retinologist noticed a difference with the lowfat vegan diet (unprompted, he said, "keep doing whatever you are doing".) Did I?  No (with lousy results), but maybe I will now. This is interesting.

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Balanced - mostly

JoAnn De's picture

When I was a kid we were pretty poor and our diet reflected that.    High carb, high fat foods.    As an adult I've eaten a mostly balanced diet.   Every night there is a carb, a protein and a veg.    I was never a fast food eater, and rarely drink soda.      I had my first bleed at age 42 and am now 54 with multiple bleeds in each eye (treated in the past with Avastin and over the past 2 years with Eyelea).   I test between 20/20 and 20/30 (corrected vision).

If a vegan diet could help I might consider it.   Hopefully there will be a questionnaire rather than just anecdotes that can be studied.

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nelson pollock's picture

I am a dissertation editor and I can tell you that I am not so motivated. 

I've tried to eat healthy food but my desire dont't like it. What can you recommend me?

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Plant-based diets, food sensitivity-identification, and PXE?

JessF's picture

I have PXE and have been really interested in learning how diet affects the condition.  So, I'm glad that researchers are exploring this question.

I have PXE (skin symptoms first appeared at age 18, and I am 40 now).  I have angioid streaks in my eyes,  but was told by my opthamologist that my condition has been stable over the past few years.  

I am pretty fit, run, eat a healthy diet, chase my 2 kids around, and maintain a 3/4 time job, but with some pestering health issues beyond the typical list of PXE concerns.

I was a lacto-vegetarian for a few years in my 20's.  In the past year, I experimented with a plant-based diet that is near vegan with a small amount of dairy and eggs.  More recently, in concert with my doctor's advice, I am following a gluten-free diet that is also largely plant-based (so a little dairy and meat).  Initially, I noticed a surge in health after adopting a plant-based diet; however, I had some health conditions that were unresolved - and unrelated to typical PXE symptoms.  These symptoms have resolved or been reduced with the removal of gluten from my diet.  I'm not suggesting that gluten is an issue for everyone, but that it is important to determine whether there are food groups that your body does not tolerate well - as these may aggravate autoimmune or other health conditions.  The jury is still out as to whether this diet will stem the progression of my own PXE, but my sense is that if I feel better, it seems to help some more immediately detectable issues, and it is healthy, then it can't hurt.

Of course, this is an entirely anecdotal and unscientific account, and my test period is short.  Which is why a study of diet across the entire group is so important.  I look forward to learning more from the researchers, and happy to contribute.

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Stacey Mokalis's picture

We  have  all  been  talking  about  diet  and  how  it  may  affect  pxe patients.What  about  psychology?Can  that  also play  an  important  role  in  how  fast  the  condition  develops?Is  it  the  combination  of  diet  and  stress,maybe?I  feel  I  am  more  vulnerable  when  under  stress.I  did  get  my  first  eye  bleed   when  under  great  stress.Anyway , I  am  very  careful  with  my  diet and  I  had  been  thinking  my self  about  gluten  free  products...Has  anyone  else  tried?

nelson pollock's picture

Hi. You post is quite interesting to me. I found a lot of new information for myself and it's really cool. Can I ask you, you wrote this post based on your experience or based on someone's article? Thanks,

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Stacey Mokalis's picture

Hi.It  is all  my  personal  experience.What  I  have also  recently  been  thinking about  is  that  I  follow  a  mediteranean diet since  I live  in  Greece  and  I  have  absolutely  no  health  issue  other  than  the  deterioration  of  my  eye vision  in  my  left  eye after  a  bleed  I  got  last  year.I have  not  been  doing  any  serious  exercise other  than  a month  and  a  half of  pilates.What  I  believe deteriorated  my  health  was the  fact  that   I had  a  rough  time  last  year as  concerning  stress. That was the  first  time  I actually  realised  what  pxe meant.I have  no  medical  support  so I  am  trying  to  collect  data  from  my  own experience  and  then  try  to  draw  conclusions... Fatty  food upsets  me and  I found  the  fact  that  someone  mentioned  olive  oil  as  negative  to  his  health interesting  since  I cant  tolerate  excessive  olive  oil  in  my  diet  as  well.I  feel  weak  and  sick  if  food has  too much olive  oil  and  I  dont  mean  nauseated, just  weak.I  must  add  that I  have  never  been  overweight  in  my  whole  life. 

 

Raj's picture

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Longevity

Debbie Dyjak's picture

I am 58 and not vegan but healthy. Does anyone know the oldest person living with PXE? 

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xyz48's picture

I am 48

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