Another digestive disease, Peutz-Jeghers Syndrom

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    Hi! I’ve suffered from a disease called Peutz-Jeghers Syndrom my whole life. PJS causes me to grow polyps in my digestive Tracy, anywhere between nose and rectum. These polyps cause pain, inflammation, nĂ¡usea, vomiting, constipation, appetite problems, and sometimes intussusceptions (intestines telescoping in on themselves) and internal bleeding. When I was 6 I started getting really bad headaches and seeing floaters. When I was 11 I got really, really bad kidney stones in both kidneys, some had to be surgically removed. When I was 14ish I started getting really bad hives that would show up anywhere pressure was applied to my skin, i.e. seams in clothes, bra hooks, creases in bed sheets, scratching an itch, bumping into a table. The itching was unbearable. I could sleep, I couldn’t go anywhere, it looked absolutely terrible. After only a couple of days I was so tired that I slept through scratching my skin raw. We went to the GP, dermatologists, test for infections, went to the allergist.
    The allergist couldn’t do scratch tests because we couldn’t get the hives to go away, so he did an IgG blood test. I came up as allergic to just about everything he tested. And he tested for everything. He basically told us the test is unproven and unreliable. I could try cutting out all of the things I was allergic to, which would have probably cut me down to the really strict pale diet Mikhaila Peterson talks about. My parents were not comfortable with that. And neither was I, I was in Highschool. I wanted to be able to eat without constantly worrying and tons of time with prep. We were also kind of poor, so it’s hard to be picky with your food. We eventually controlled the hives through Xolair(injection) and Xyzal (pill). Thankfully I have really good insurance. My parents weren’t ever really big believers in eliminating food to help symptoms. We tried elimination diets when I first getting stomach aches, around age 4,with a lot of frustration and no success.
    Anyway, I’m 21 now and living without my parents and tired of being sick. Since moving out and gaining some control over my diet I’ve realized that diet does have an affect on my symptoms. But, I figured I’m eating a “healthy balanced diet”, lean meats, fruit and veg, some dairy, good macros, not much pizza or ice cream, this is as good as its going to get, or so I thought. Then I found Mikhaila’s story through Joe Rogan, and it gave me so much hope. I’ve been reading stories and testimonials and stuff nonstop.
    I decided to experiment with diet and see what helps. I can’t find any stories online for people with PJS, so I decided to start an anonymous blog. My blog is at Learningtoeatwithpjs.wordpress.com
    I cut out gluten a week ago and so far the only effect I’ve seen is slightly better mood and a 3 pound weight loss.
    I plan to cut out one food at a time for a little while, cutting out too many at once scares me with all of my different health problems.
    If Mikhaila is still taking testimonials in a month or two, when I see results, I’ll send mine in. Until then, if you or anyone you know has PJS and wants to see what effects diet changes can have, you can follow my journey at my blog Learningtoeatwithpjs.wordpress.com

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