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

Celiacs In Nursing Homes - How Can We Make Sure They Are Safe.

georgie

Recommended Posts

georgie Enthusiast
georgie
Posted

A friend of mine rang in tears. Her father has dementia since a stroke and now has had a fall and been put into a Nursing Home. He has been Celiac for many years - basically eating correctly with the occasional lapse for which he suffered each time. Now he is in this Nursing Home the staff are giving him cookies as 'one won't matter', and making him sandwiches with regular bread. My friend can't seem to make them understand that he needs a special diet. He is 82 with dementia - is it worth the fight and aggro ? Or does she have to sit back and let them feed him like they are?

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

What your friend needs to do is talk to her father's doctor. The doctor needs to go to the nursing home and make them understand that his diet is medically necessary, and can't be deviated on. Maybe a nutritionist can go and talk to the staff and educate them.

Somebody they will listen to needs to tell those blockheads at the nursing home that they are KILLING the man with their cookies and sandwiches!

Luvs to Scrap Apprentice
Luvs to Scrap
Posted

I agree that having the dr talk o the nursing home about needing to be strict with the diet would be helpful. For some reason some people just don't believe people who live with the diet every day. Your post made me realize how lucky we are with the nursing home in town where my DH grandma lives. Someone comes in and makes her special bread and they are very careful what they give her. They even served gluten-free peanut butter cookies at the Christmas party for everyone. DS and DH were thrilled because they actually had something to eat too at the party. They have also but gluten-free sandwiches on a plate for grandma, DS and DH at other parties. DH hasn't gotten sick eating what they say is safe so I think they must be pretty careful. Grandma cheats but it is her choice not their fault and it is usually at one of our family things. My DS and DH do not cheat and it frustrates me when she does because it makes me look ultra strict and paranoid about my husband and son and being careful about what they eat. DH says if he is 80 something and lives a couple feet from the bathroom and doesn't have anything else to do he guesses it would be ok to cheat but he currently does not think it is work the big D and health problems.

Possibly providing staff with some "safe" cookies that they can give the resident might be an option too since they seem to be inclined to think he needs cookies. I wish your friend the best and hope the nursing home gets a clue soon! Kendra

ravenwoodglass Mentor
ravenwoodglass
Posted
A friend of mine rang in tears. Her father has dementia since a stroke and now has had a fall and been put into a Nursing Home. He has been Celiac for many years - basically eating correctly with the occasional lapse for which he suffered each time. Now he is in this Nursing Home the staff are giving him cookies as 'one won't matter', and making him sandwiches with regular bread. My friend can't seem to make them understand that he needs a special diet. He is 82 with dementia - is it worth the fight and aggro ? Or does she have to sit back and let them feed him like they are?

Contact his doctor and contact the head of the nursing home or better yet have your lawyer do it. Be firm as Ursa said they are killing him and not painlessly.

Viola 1 Rookie
Viola 1
Posted

Waht a shame! And doing it to someone that can't stand up for themselves. That's scary.

Yes, ... get that doctor involved, and if necessary a lawyer.

Generic Apprentice
Generic
Posted

I don't know how it is down in Australia (I'm assuming that is where he is too). My mom worked in nursing homes for years, as a nurse. She says the food they feed the paitents is absolute crap. Every thing and I mean everything comes pre-made just add water etc. She has seen a decline in people's health eating all the preservatives and additives.

She had seen (she is retired now) about a 300% increase in bed sores, skin tears and those little "hang nail" skin pieces around the finger nails. She has always been very nutrtion conscience. When my great-grandma was put into a home they put her in the home where my mom worked. My G-Gram was diagnosed w/celiac at 82.

She said just about any time they got a new dietician or nutritionist they would give her the wrong food. They really just have no clue. (Now I am not saying all dieticians or nutrtionists are clueless, so please don't take offence if you are one). The problem is most of the food has tons of gluten in it in one form or another. The kitchen staff would actually have to cook something from scratch -oh the horror!

-Laurie

Nancym Enthusiast
Nancym
Posted

My Mom is in a pretty nice nursing home, very family like, lovely place. Anyway, even so it seems like the kitchen is extremely disorganized. Yeah, I would imagine getting a proper diet from a nursing home would be like getting the same from a hospital, really difficult. Still, they're supposed to be able to handle that.

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

Celiac.com Sponsor (A8-M):


angel-jd1 Community Regular
angel-jd1
Posted

I know that nursing homes currently don't seem to be able to comprehend the term gluten free. I am hoping that by the time that I need a nursing home they have it down pat.

I am sure years ago they had no clue about diets for diabetic people, people with low sodium diets and so on. However, they have learned with their learning curve. I hope it is the same way for gluten free diets.

By the time my generation gets in nursing homes, they will have a jillion food allergies and intollerances to be cooking for. They had better start practicing now :P

-Jessica :rolleyes:

happygirl Collaborator
happygirl
Posted

Maybe by the time we are there, Jessica, there will be specialty gluten free nursing homes ;).

angel-jd1 Community Regular
angel-jd1
Posted
Maybe by the time we are there, Jessica, there will be specialty gluten free nursing homes ;).

That's what I am hoping for! ha

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748
    denise.milillo
    Newest Member
    denise.milillo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.