Friedreich’s Ataxia News Forums Forums Living With FA Gluten free diet- have you tried?

  • Gluten free diet- have you tried?

    Posted by Frankie Perazzola on July 11, 2019 at 4:56 pm

    Just based off of curiosity, who here has tried going gluten free or is currently gluten free? Did you notice a difference?

    Personally, I feel better and lighter when I have no gluten but I know everyone is different. How do you feel?

    If you haven’t tried going gluten free, would you want to?

    Fi replied 4 years, 7 months ago 7 Members · 8 Replies
  • 8 Replies
  • Jassim

    October 15, 2019 at 12:51 am

    Hello Frankie,

    I visited a nutritionist and I told her I have friedriech ataxia and I want to avoid diabetes before it happens.

    She said follow gluten free diet.

    I am searching the relationship among both. Gluten and diabetes.

    Do you have any insights about this?

  • Yanita Oparlakova

    October 16, 2019 at 6:42 am

    Hello, I have been following the forum for a while but I would like to become an active member of the community. So I thought to start by contributing in a topic I have experience with.

    For context, I have been on self-imposed gluten free diet for more than 2 years. While I was still being tested to confirm my ataxia was indeed genetic, one of my doctors mentioned gluten intolerance might be an alternative explanation. To cover all bases I did quite a lot of research and discovered gluten is entirely unnecessary component of any diet. It’s not beneficial in any way to the body and in a lot of cases people have mild issues with it.

    I personally feel generally healthier on a gluten free diet (this is why I’ve been sticking to it) but I don’t see any direct correlation to my ataxia symptoms. I am not so sure what the connection with diabetes is either but this is definitely something to be explored.

    A few things I had to adapt to is making sure I get enough fibre from alternative sources and actually eating enough calories to not drop my weight.

  • Jassim

    October 16, 2019 at 10:04 am

    Thanks yanita

    It seems like no relation but like you said it’s unnecessary and you feel healthier

  • Deleted User

    Deleted User
    October 18, 2019 at 12:57 pm

    I saw this post and decided to join so I could reply.

    I am 34 and have had a slow steady decline for 25+ years. Four years ago, I went gluten-free unintentionally and began to see improvements in my physical performance and stamina. Even my mental performance was improved. Contaversly, when I ate gluten, all these improvements. Then, after suspecting gluten, I officially tried a one month challenge and have been gluten-free since.

    From that time, I have had gluten occasionally, by accident or carelessness. Every time, I get much more inflammation, not residing for more than a month. I get water retention; I lose weight because I quit absorbing macro-nutrients right; my sweat is pungent, and I began to imagine food leaking into my blood-stream and causing neuroinflammation: it feels like I get ADD and depression. I am not able to work for the next month. Thats enough about that!

    Because of the correlation and the fluctuation of my baseline at the variable of gluten, I took all the tests for ceoliac’s: nothing! Recently, I have found out about gluten-ataxia, which involved a different antibody than ceoliac.

    Anyhow, this is just my experience.

  • Deleted User

    Deleted User
    October 21, 2019 at 12:53 pm

    Frankie, I have no idea how to respond to your reply, and I can’t even see the comment on the discussion board. Perhaps an error?

    Anyhow, the first things I noticed after being gluten free: one, my sleep apnea almost disappeared. It’s not like I’m overweight. I’m 6′, 165 lbs. But I began to sleep the whole night through for a first in a while. There were no more headaches or sore throats in the morning, and there was no more labored breathing when I lied down.

    Two, I had significant less inflammation all over: significantly less swelling on my feet and ankles, no more cold hands and feet (I sensed blood flowing in my veins and capillaries better), and I quit having to suddenly pee all the time, as if fluid were always pressing my blatter and giving me that urge.

    Three, the arthritis in my hands and wrists nearly went away, and as a result of these things it is like I have made progress with FA rather than a decline, although I still have a slow decline. As you, I feel lighter. Though I do not walk anymore, I have been able to go from pressing 0 with my legs to 100 after a year with a lot of practice, something I think would not be possible prior to being GF.

  • Gunnhild

    October 22, 2019 at 10:37 am

    Hi guys 🙂 I’ve had celiac disease all my life and i’m on a strict gluten free diet. It’s interesting to read your experiences with gluten free diet. I myself have nothing to compare with.

    I don’t understand the advice the nutritionist gave you, Jassim. Gluten free alternatives are full of sugar. Really rubish for diabetes. I would rather say go for low carb diet 🙂

  • Debi

    October 30, 2019 at 6:38 pm

    About 10 years ago, before my diagnosis, I had a lot of leg pain. My legs felt so heavy and they really just weren’t working right. I wasn’t having any other FA symptoms. Someone suggested I try a gluten free diet since gluten can cause inflammation for some. If you read about athletes using the GF diet, you’ll learn about benefits they experience. Anyway, for me it took less than a week GF to feel the difference.
    I have late onset FA, was diagnosed just 2 years ago. I truly believe being GF gave me 8 more years of walking that I could have lost.
    And as far as GF helping with blood sugar, it does. Obviously there’s plenty of GF junk food out there. Snickers are GF, but obviously full of sugar. But eating a healthy GF bread or cereal will not spike your blood sugar the way gluten containing items do. And you can easily test that one yourself if you test your blood sugar.

  • Fi

    November 6, 2019 at 6:25 pm

    I’m on it. I have noticed the lighter feeling, less bloating and all that. I think it might help me digest my vitamins a bit more. And I think I have more energy.

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