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    • #15765
      Bailey Vincent
      Keymaster

      True or False: Do you like extra salt on your food?

      I’m sure we’ve all heard this joke in the CF community: We all love salt. We add it to our chips… to our meals. It’s a constant salt-side hustle. But… is it?

      I wonder how many of these traits are actually true to form. Since this one can be explained by science technically, but might be a bit of an exaggeration in actually, I’m always curious if there are some of us out there who hate salty things.

      In this case for me, it is true. I love salty food… I love adding salt to my chips… and I crave it more often than not. I’m not like “starved for salt” at every twist and turn but… Yeah, I dig it.

      What about you?

    • #15766
      Becky Fox
      Participant

      Hi Bailey, I was saddened to read about your cousin who took his life due to deafness. My brother’s death was also very sad. I won’t elaborate on the details, but I will say this, Roddy was a very upbeat, friendly and social person. However, he did have many health issues besides his deafness.
      As for salt. Kelly has never added salt to her food, not even popcorn. About the only salty snack she likes is pretzels. Around Halloween season she will buy pumpkins and roast the seeds (she absolutely adores pumpkin seeds). But if you want salt on them, you have to put it on yourself. Maybe it’s because she has so much salt in her system, she really doesn’t need it on her food. When she was first diagnosed with CF, the doctor thought she had an added condition called Barter’s Syndrome (I think that’s what he called it, or maybe it was Barton’s Syndrome) because she had such a high level of salt register on her sweat chloride test. Thankfully she didn’t have the other condition, upon further testing. The days before she was diagnosed were late June/early July, and quite hot. Kelly would sweat profusely and patches of salt formed on her forehead. She was five months old. I was perplexed. I had no idea what they were till I was told by hospital staff. I was dumbfounded. If there was a newborn screening for CF back then, we could have started treatment from day one, and saved Kelly months of misery. I’m so glad they routinely screen newborns for CF now. Were your babies automatically screened when they were born? Kelly’s baby sister was administered the sweat test at birth. Then when she was three months old they tested her stool. Good news…no CF!! Kelly was my one in four.

    • #15773
      Jenny Livingston
      Keymaster

      This one is so very true for me! I joke that salt is my favorite food group. I wondered if this would change for me once I’d been on Trikafta for a while… like, if my body’s salt content or processing of salt was changing, would my desire for salt decrease? Nearly a year later, I can affirm that I still crave salt as much as I did before!

    • #15775
      Paul met Debbie
      Participant

      No extra salt for me.

      My mother, she died at 92, was a prolific salt user though. She even hated these modern little salt-grinders you find on the tables of restaurants nowadays and always asked the waiter “for a normal salt shaker” so that could shake it profusely above her food, like she did at home. High blood pressure could not stop her. She took the pills, and the salt. I guess I am more like my father in that respect.

      Lately I find more and more that adding salt to food is most of the time hiding the taste of the original thing. I much more appreciate the herbs and other spices. Sugar is another thing I find myself eating less and less, unless it is packed as fresh fruit. And one lump of sugar in my coffee please (15 years ago these were three). Still, when tired and hungry, sugar still is an easy and fast source of energy – hide the cookies please.

    • #15780
      Tim Blowfield
      Participant

      Ah. Salt! The battle line between my wife’s CF Doctors and cardiologists. CF Drs recommend added salt and water and the Cardiologists no salt and limited water.
      If she limits water too much she risks a bowell blockage (She has an iliostomy due to the damage CF did to her large intestine).
      Every now and then she craves salt and will eat a packet of salty potato chips. She has low Potassium unless she takes additional Potassium tablets.
      Interestingly salt is not always evil in the normal person just those prone to high blood pressure which she for some reason does not have. She does have cardiomyopathy ( a cause of heart failure) – may be the reason her BP is OK despite Angiotensin and Renin being sky high (but in the right ratio).

    • #15781
      Tim Blowfield
      Participant

      Ah – the dreaded Sugar.
      Long time ago while at Uni in the 1960’s Butter was demonized as the cause of Heart Attacks because of ‘association’. One of my professors debunked the theory by showing there was a better correlation between wearing kilts and heart attacks than between butter consumption and heart attacks. The Scots had a high incidence of wearing kilts and heart attacks. He was more concerned with sugar.
      Since then Refined sugar has been shown to be problematic with its association with diabetes and obesity. Corn syrup (high Fructose) has also been problematic as has white flour and rice (again highly refined). These later produce rapid rises in blood glucose (High Glycaemic Index).

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