PXE Veggie/Vegan Study

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

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. 

 

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