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


MitziG

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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? <_<


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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.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
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      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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