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. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside...
    2. Wheatwacked
      - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Have I got coeliac disease

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins...
    3. Jmartes71
      - Jmartes71 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Gluten tester

      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that...
    4. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

      Oops! @Staticgypsy, I’ll get the book! Thank you!
    5. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was man...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,151
    • Most Online (within 30 mins)
      7,748
    Nici
    Newest Member
    Nici
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
    • Jmartes71
      Gluten tester

      By Jmartes71 · Posted

      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that food smell of nasty gluten- migraine and same with Walmart subway.I absolutely HATE im that sensitive, my body reacts.Sadly medical hasn't taken core issue of celiac being an issue considering glutenfree ever since 1994 and in their eyes not because they didn't diagnose me. I am and wish I wasn't. If there was a detector of gluten in the air it would make a world of difference. 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Oops! @Staticgypsy, I’ll get the book! Thank you! 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was many years into gluten-free eating (and was much more careful at that point), I’m just baffled. Many, many thanks to you both. 
×
×
  • 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.