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. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread.
    2. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores).
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      This sounds very similar to the neuropathic pain I experienced with type two diabetes. Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6. These are vitamins frequently found to be low in people with pre-diabetes and diabetes. Remember that blood tests...
    4. trents
      - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

      Welcome to the celiac.com community, @Amiah! First of all, you would do well to post your question in one of the appropriate community forums rather than in a blog. It will get more attention that way. Now as to your question, there are some other things that can cause elevated igg antibodies besides celiac disease. Various infections, mostly. For...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748
    Kim RS
    Newest Member
    Kim RS
    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

    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.