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

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

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

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
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

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

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

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

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

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

angel-jd1 Community Regular
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.

  • 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 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,335
    • Most Online (within 30 mins)
      7,748

    VanessaC
    Newest Member
    VanessaC
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.