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. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    2. trents
      - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. The one test that was ordered...
    3. mamaof7
      - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful...
    4. Dizzyma
      - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me. My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free i...
    5. tiffanygosci
      - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,955
    • Most Online (within 30 mins)
      7,748
    JodyBledsoe
    Newest Member
    JodyBledsoe
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Help understand results

      By trents · Posted

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      Help understand results

      By mamaof7 · Posted

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.