Jump to content
  • 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

MitziG Enthusiast

Ok, My mom, myself, and both kids are biopsy dx celiac. My dad has had major intestinal issues for 40+ years, along with chronic indigestion. We are all pretty sure he is at least gluten intolerant, but Dad doesn't go to doctors, at all- so there was no testing and never will be. When Mom went gluten-free, Dad kinda did too. As in everything at home is gluten-free, but occasionally, once or twice a month, he would eat something gluteny at someones house or a restaurant. He gets sick afterwards with diarrhea, heartburn and dizzy spells. No brainer right? Call Dad a slow learner. Anyway, there is no reasoning with him.

So, since he has been 95% gluten-free for about a year, his gi distress is pretty much gone- aside from wheen he cheats. He also lost about 40 lbs and is now a bit too skinny. What alarms me though is that despite being very active, doing hard physical labor all the time, his muscle is wasting badly. He is 63 and suddenly looks like he is 90. His skin hangs off his face and arms, and his arms look like sticks. Dad has always been a strapping guy, so it is a bit of a shock.

If I had my way he would be at the dr getting tests- but that is a moot point. So I am trying to find a dietary remedy (other than the obvious 100% compliance with gluten-free) is he not getting enough protein? It just seems odd that even tho gluten obviously makes him sick, he looked so much healthier when he was eating it! Any thoughts?


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

Maybe he's not eating enough now that he's eating differently? Maybe he was kinda puffy while eating gluten and it just kind of masked the skinniness.

MitziG Enthusiast

He wasn't really "puffy"- he was overweight. But he always had a lot of muscle underneath. He has always been the kind of guy who could wrestle a bear- and win. ;) he chalks it up to aging- but 63 isn't that old- and too change so rapidly???

I wonder what he is eating too. Not enough probably. He gave up dairy because it plugged his sinuses, so I am guessing there isn't much fat in his diet. I have my mom reading the Primal Blueprint and am hoping that might help him. He has some bad joint inflammation going on, and I think being grain free might help him. If he will do it.

Sigh...why must men be so difficult?!

IrishHeart Veteran

Muscle wasting? or he's just thinner now?

Going primal is going to make him even thinner (at first). And he may not like it very much either. :D

I had serious muscle wasting but that was when I was very ill from UnDXed celiac. I was overweight, then lost 90+ lbs. so I looked like a wrinkly shar-pei. :unsure: Really awful. I am gaining weight back so I look less emaciated and wasted.

If he does not feel well OR experiences weakness in his limbs, he needs to be evaluated by a doctor. IMHO

FWIW, My Hubs is 10 years older than I am and at 65, he is still VERY strong and a big guy at 6'3"-- and his muscles are rock solid, even gluten free.

So the change in your dad's muscles are not because of being gluten-free, I do not think.

MitziG Enthusiast

It is definitely muscle wasting. His arms look like a little kids- and he has always been rock solid.

A doctor...yes...do you know any who will come to the house and shoot him with a tranquilizer dart?

IrishHeart Veteran

uh, no.... :)

sorry he is so reluctant.

(who can blame him?)

but muscle wasting is a significant symptom.

Jestgar Rising Star

Maybe his testosterone suddenly dropped, either from age or diet. You could have him tested, but I don't know if they would replace it at his age, if that were the problem.


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



Celiac.com Sponsor (A8-M):



MitziG Enthusiast

Is it possible that going gluten-free could have "triggered" a more active form of the disease- and since he is only partly compliant it is making it worse? I dunno- it is just so weird cuz all of his other intestinal issues are SO much better.

A few years ago he appeared to have a stroke his whole left side was paralyzed his face drooping. He went to work and it wasn't until he lost his vision in the left eye that he agreed to go to the hospital. And it took a lot of persuasion. They kept him a few days, did lots of tests and decided it was Bells Palsy and sent him a $13000.00 bill. He doesn't have insurance. Next time he sees a doctor it will be in the morgue.

Jestgar Rising Star

I'm just thinking that other males have reported discovering low testosterone after going gluten-free. Dunno if there are any non-medical ways to overcome it.

This appears to have been written for three-year-olds, but it has some basic info:

Open Original Shared Link

MitziG Enthusiast

Hmmm....don't think I will be inquiring as to if he has decreaseed sex drive or shrunken balls...he may be on his own here.

IrishHeart Veteran

Hmmm....don't think I will be inquiring as to if he has decreaseed sex drive or shrunken balls...he may be on his own here.

:lol: :lol: :lol:

nope, can't see "going there" with my Dad.

Seriously, ask him if he eats enough, for starters.

Adalaide Mentor

Not a conversation I could picture having with my dad. On the other hand, I could totally talk to my mom about it. Is that an option? Depends on the relationship there I guess, for some people it would still be really weird.

MitziG Enthusiast

Yeah...really weird. We are a pretty private family! Maybe I will print off the page about low testosterone and give it to her cuz it "mentions muscle wasting as a side effect." Let her do the rest! Mom is worried about him too.

I am thinking he just isn't eating enough though- or not enough fat and protein anyway. They eat pretty healthy- usually lean meat with veggies and rice. Maybe he isn't getting enough carbs either? I had him drinking some awesome protein shakes, but alas, the whey in them messed up his sinuses bad so he stopped.

They live a few hours away so it is difficult to "supervise" his eating. I hadn't seen him in a couple months until this weekend and I was shocked by how he looked!

woodnewt Rookie

There are a lot of different medical conditions from mild to serious that can cause muscle wasting. Whatever it is, I hope it's nothing serious!

Do you think it could be possible he's just not eating enough protein? Milk is high in protein, and if he's cut that out he may have cut out a major source of his protein. RDAs for protein aren't necessarily ideal. I had an injury-related atrophy of one arm since my teenage years and my arm did not recover its muscle mass until I started eating over 2x my recommended RDA of protein.

cavernio Enthusiast

Trying to find a dietary remedy for something that may not be dietary seems dumb. As woodnewt says, there are a lot of medical conditions that cause muscle wasting.

It's nigh impossible to not get enough protein in one's diet. The only way I could see it being an issue is if he ONLY ate fruits and veggies and rice/other low protein grains. I mean, if he eats meat or eggs or beans or tofu at all, protein itself shouldn't be an issue.

I wouldn't put it past the twice a month glutening to be causing the muscle wasting though. Even if he's eating enough protein, if he's not absorbing what he needs from it...

MitziG Enthusiast

It isn't dumb if it is the only option. He is a grown man and I love him. He is the only dad I have. But he is nuttier than a fruitcake and will NOT go to a dr.

He has a crippling disease called Dupuytrens Contracture. The tendons in his hand are shortening so that one hand is almost in a claw position. Surgery would fix it. Dad won't have it done, and yes, he has the money.

He keeps saying he is just going to cut those two fingers off with a band saw.

I half believe him.

This is what I am dealing with.

It is rather rude to dismiss someones best attempts as "dumb" when they are the BEST attempts.

I realize it may be serious. Perhaps he has cancer. It doesn't matter because my dad will die before he let's them stick a needle in him or pops a pill.

Do you get it now?

Adalaide Mentor

It doesn't seem far fetched for it to be diet related since it happened after a diet change. Maybe it's not, but hey sometimes all we can do is shoot in the dark.

Sometimes finding a way to laugh at something that isn't actually funny helps me get perspective or just plain feel better. If it helps you de-stress, just imagine how many shades of red he'd turn while sputtering and unable to talk if you asked him if he had shrunken balls. I know imagining my dad's response is worth a laugh. :lol:

JNBunnie1 Community Regular

It doesn't seem far fetched for it to be diet related since it happened after a diet change. Maybe it's not, but hey sometimes all we can do is shoot in the dark.

Sometimes finding a way to laugh at something that isn't actually funny helps me get perspective or just plain feel better. If it helps you de-stress, just imagine how many shades of red he'd turn while sputtering and unable to talk if you asked him if he had shrunken balls. I know imagining my dad's response is worth a laugh. :lol:

I would have been completely comfortable asking my father, or my mother for that matter, or both together, those kinds of questions. However, my father died 6 years ago from leukemia. My mother had to harass the holy heck out of him to get him to the doctor. He died a year later.

Does guilt work on your father? Bribery? Sweet-talking? Nagging? Grandchildren? Yelling confrontation?

This could easily be straight, standard Celiac symptoms set off by the diet change. Could also easily be something else, innocuous or not. Honestly, it could be cancer, or a simple food issue. There's no way to know if he's being too stubborn to deal with it. If it helps, I'll be happy to write a letter you can share with him, telling how much it sucks to lose your Daddy.

IrishHeart Veteran

This is probably a moot point, given his disdain for docs, but has he had an over-50 colonoscopy or prostate exam?

I hate to bring up the "C" word, but hubs suggested this as a reason for his muscle wasting and I thought I'd throw that out to you.

As an aside, my Dad is gone now, but I had to chuckle at the thought of ME having a conversation with him about his testosterone/manhood and I laughed just thinking about it. We were very close and talked about everything under the sun and I am sure he would have had some smart ass reply for me. :lol:

I miss my Daddy beyond words and if he were here right now, I'd ask him a bazillion questions and then force him to go to the doctor. I accompanied him to every appt. he had anyway. He was a celiac if there ever was one and it's too late to save him now.

IrishHeart Veteran

Bunnie and I posted almost simultaneously. Of the same mind, I see. :)

Yes, I can write a letter about missing my Daddy too, if you want more reinforcements.

MitziG Enthusiast

I appreciate it, but it is no use. Two days ago he matter of factly stated that he didn't expect to see 65. When I got teary talking about my kids and how much they would miss their grandpa he shrugged it off with, "they'll get over it."

Dad has been depressed his whole life. No amount of nagging or pleading would ever get him to seek help though. So he doesn't dread death- he is fine with checking out early.

14 years ago he went to the hospital with an apparent heart attack. (When he is incapacitated we are able to force him into a doctor) they told him his heart and veins were shot and gave him 2-3 years. This was at Mayo Clinic in Rochester. Nothing they could do for him they said. Yet here he is...and I think he is still waiting to die!

Obviously, the rest of us are opposed to him checking out early, but there is only so much we can do.

IrishHeart Veteran

Dad has been depressed his whole life.

One of the signs of celiac to me.

So sorry, kiddo. :(

You have all done all you can.

Do not beat yourself up over it.

I have family members I can't get to see the light either.

My GI doc told me to give it up--for my own sanity and good health.

He said "Even MY OWN parents don't listen to me. They said to him "what do YOU know?" :huh:

MitziG Enthusiast

ok, THAT is funny. Poor doc!

Yeah, I am sure celiac is at the root of what is wrong with him. At least he mostly is gluten-free. My ignorant siblings refuse to even consider the possibility that they could have it, despite having 4 dx celiacs in the immediate family, and one un-dx but OBVIOUS celiac!

Cuz they are "just fine" ...my sister lives on antidepressants and migraine meds, my brother can't step outside without major allergy attacks, both of them are obese, and ironically my portly brother was EMACIATED the first 20 years of his life- to the point that people accused my parents of not feeding him!

Argh. Family. Still thinking the tranquilizer dart thing may be the way to go...

Gemini Experienced

It is definitely muscle wasting. His arms look like a little kids- and he has always been rock solid.

A doctor...yes...do you know any who will come to the house and shoot him with a tranquilizer dart?

Mitzi...your father most likely has very active Celiac and the fact that he has much less stomach distress does not mean he probably does not have Celiac and is just gluten intolerant. Muscle loss and wasting happens when you have burned up all the fat and then your body starts burning muscle. Your body needs a food source and will burn muscle when nothing else is available.

That usually happens when Celiac is very advanced. This is exactly what happened to me and my father is the same...he looks like he was just rescued from a concentration camp. Both my father and I had/have ultra skinny arms...like a child's. I have recovered and have normal arms for the first time in my life but my father is so brain fogged from gluten, he doesn't understand and won't listen. I understand what you are going through but you may have to accept that your father will not survive this. Mine won't either but I have accepted that I can't save everybody. It really sucks to watch people die from Celiac and have them refuse to do anything but it is what it is.

Men don't lose muscle like that from low testosterone. It is normal for testosterone to dip as men age but muscle wasting is from a disease-state.

I wish you luck. I can understand why he doesn't go to doctors as I admit I do not go that often myself. I always seem to do worse when I see doctors....it's usually a waste of my time. In fact, I did my recovery all by myself and did very well with that but at least I knew something was wrong and got tested. After that, doctors aren't necessarily needed. Maybe you could try that angle? If he just got tested to see what shows on the panel, he might be more willing to stick to a strict diet if he knows he'll be able to recover on his own.

MitziG Enthusiast

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.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.