Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Need To Pick Your Brains Friends- Why Is My Dad Losing Muscle?


MitziG

Recommended Posts

Gemini Experienced

I doubt after being pretty much gluten free for a year he would still test positive. Yes, I wonder if going gluten-free is what triggered a stronger immune response when he started cheating. Since before he had a lot of intestinal issues, but no wasting. Now maybe his immune system is totally stoked against gluten and waging big time war on his villi?

I will try to explain that possibility to him. Maybe it will be enough to get him to quit cheating, since he admits that it does seem to be a problem for him.

How it works, from my perspective and experience which mirrors your fathers symptoms, once you trigger for Celiac, damage will continue if any gluten is ingested. By going gluten free, you give your body a break and it starts to heal but then cheating occurs. People can have stronger reactions but the damage will continue until you reach critical mass, as I call it. You have burned up all your body fat so now your body looks to muscle to burn...the same thing that happens with starvation from lack of food. Not absorbing nutrients is the equivalent of not eating at all. Wasting only occurs when damage is severe....a person is getting to the end of the line with this.

I was down to 96-97 pounds and had no muscle. I looked like a walking skeleton. However, with time and a strict gluten-free diet, I healed and now am running at 110-112 pounds and I have muscle again. You just cannot eat gluten, period. I so empathize with you as I am watching my father slowly waste away from untreated Celiac and his mind is going also. Early dementia, they say, but I am not buying into that crap. He has extreme gluten head going on. I was there myself and know better than any doctor the signs and symptoms. But I don't have MD after my name so what do I know? <_<


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cavernio Enthusiast

But you said he doesn't even listen to other dietary restrictions, so I don't know why trying to change his diet in other ways will suddenly appeal to him.

I understand stubborn parents. My dad refuses to get tested for celiac disease (despite his various symptoms of it and him being my dad and all), especially since my mom's tested negative for it, and refuses to go to doctors most of the time anyways, and then b%$@#es about them to relatives without him even bothering to explain his symptoms to doctor. It pisses me off to no end.

But unless he's senile or mentally ill, he's got the right the not get medical treatment. If he has been depressed his whole life, you might be able to get some sort of legal forcefulness to get him medical treatment, especially if he's not looking after himself. Depressed people often don't care about themselves or anyone else, that's why they commit suicide. This essentially is him committing suicide, just in a slow, painful way.

From my perspective, I know that appealing to me emotionally while I'm depressed just doesn't work. The only thing that works for me is logic. If he's honestly never been happy, or doesn't remember what happiness is, then you have to realize that in his mind, life is only painful or boring. If you can appeal to his logical side, show him studies, explain to him that he things like going gluten free, seeing a doctor, taking multivitamins, might actually make him HAPPY, then that's the biggest step. He needs to want to do it for himself, but of course if he has no idea of what non-depression is, what he's doing makes complete sense to him

The tragedy of your dad isn't that he won't see a doctor or that his muscles are wasting or that his hands are terrible; it's that he has little to no desire to live. The first thing you MUST do if you want him to start looking after himself is find out what can make him happy. Unfortunately, because so many doctors are so out-of-touch with reality, it's no easy task.

The most hopeful thing for you to do is focus on him being gluten free. If he's truly a celiac, he's going to be malnourished which will make him depressed. Then try multivitamins. Note that if he EVER gets into a mood, even after starting to actually emotionally feel good, where he becomes depressed again, you will have to make sure he doesn't eat gluten or that he takes his pills. Truly looking after someone who's depressed is a full-time, heartwrenching, stressful job.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Feeling ill

    2. - Scott Adams replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Feeling ill

    3. - Scott Adams replied to Sicilygirl's topic in Coping with Celiac Disease
      2

      fed up italian

    4. - trents replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Feeling ill

    5. - trents replied to Art Maltman's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      My 5 months of Struggle


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,507
    • Most Online (within 30 mins)
      7,748

    aturmelle
    Newest Member
    aturmelle
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum! Keep in mind that if you quit eating gluten before all testing is done, you may have inaccurate, possibly false negative, test results.  When you stop eating gluten, your body stops making the antibodies which are measured in the blood tests.  Stopping gluten before an endoscopy may make the intestinal damage harder to detect, and a false negative biopsy may result.  As uncomfortable as it is, finish all testing before going gluten free.  
    • Scott Adams
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant label-reading and vigilance required. But please know that you are not alone, and many others have walked this path and come out stronger on the other side. Healing takes time, and while the brain fog, fatigue, and bowel symptoms can be discouraging, they often improve as your body begins to recover. It’s great that you’ve hired a dietitian—that’s a big step in supporting your healing journey and ensuring you’re getting the nutrients your body needs to rebuild. Remember, each small step you take is progress, even if it doesn’t feel like it right now. It’s okay to feel sad and angry, but also try to give yourself credit for your strength in facing this. The fact that you pushed for answers shows how resilient you are. While the road ahead may have challenges, many people find that over time, they feel better than they ever imagined possible once their gut begins to heal. You’ve got this, and the celiac community is here to support you every step of the way. If you have time, this book was published on Celiac.com's and you might find it helpful: Also, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • trents
      Welcome to the forum, @Whyz! By "half way to being diagnosed" I assume you mean you have had the blood antibody testing done but not the gastroscopy with biopsy. Is this correct? Were the results of your blood work positive for celiac disease?
    • trents
      Three days of no gluten is not likely to have much impact on serum antibody test results. I have more concern over exactly what test or tests were ordered. When you get the results back, please post them including the reference ranges for the tests for negative vs. positive. What country are you in? Do you have much choice in what doctors you see? Sounds like it might be a good idea to seek out another physician who knows what they are doing in this area of disease diagnosis. At any rate, you have the link I shared above outlining the various tests that can be run so that might be a resource you could share with a physician.
×
×
  • Create New...