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

Dealing with geriatric in facility

LauraL
 Share

Recommended Posts

LauraL Newbie
LauraL
Posted

My mom is a fairly healthy 96 yr old. She went in the hospital for some weakness and confusion (not gluten related). They didn’t treat her issues because she appears so healthy. Now however, she’s been sent to a rehab facility for maybe 30 days. A therapist there stated they are clueless on gluten-free diet. She’s going  to try to observe when she’s there (half days) but she’s very concerned.

Moms HMO is in crisis mode. There is no choice of facilities allowed under that condition. We had no choice at all. We also do not have immediate accessibility for mom in our home. We’re all low income and can’t afford much.We don’t know what will happen when they release her. And right now? She’s totally in harms way.  My husband has cancer but likes to cook. I can deliver dinners. But im not there 24/7.  I wish I could interview and choose a place for this rehab phase.  I don’t know if we have any rights. This is overwhelmingly sad.

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum!

If I understand your post correctly, your mother has celiac disease and needs to be on a gluten-free diet but has been sent to this rehab clinic, is that correct?

Are you her legal guardian or do you have any power of attorney? Since you are next of kin you should have the right to go in and visit her to find out what is going on there.

I will admit that I’m not an expert in this area and don’t understand all the different legal nuances, but you should definitely have visitation rights with your mother.

LauraL Newbie
LauraL
Posted
  • Author

Hi thanks for the welcome. I was a member years ago, for my mom. 
Anyway what I’m worried about is that they forced us to go there. And I just wish that I could interview places, and find a place that might be a little more familiar with gluten-free. And Heaven knows what will happen if she needs a permanent facility. We just don’t know yet. 

trents Grand Master
trents
Posted

LauraL, the only suggestion I have for you is to call the facility and talk to the kitchen manager. Ask them if there is any provision for feeding clients with gluten-related health disorders. Try to get a feel for if they even understand what that is about. If it is apparent they do not, then simplify it for them as much as you can by asking them to not feed your mom anything that contains wheat. I ache for you. This whole thing is a bummer and is probably being repeated in a lot of healthcare facilities right now because of COVID-related lockouts of family members. God bless.

LauraL Newbie
LauraL
Posted
  • Author

When this therapist called today, she told me to be pretty much on top of this at least a few times a week. We did get the cook to actually go purchase some foods but go figure, then the items didn’t make it to mom’s meals. The manager of the place told me they go by state rules for gluten free standards. Then told me a few that are totally wrong. Guess the state needs an education too.

trents Grand Master
trents
Posted

Oh, this is so sad! But why am I not surprised at the inadequacy of the state's understanding of celiac disease and gluten issues and their failure of handling this effectively?

captaincrab55 Collaborator
captaincrab55
Posted

Hi, Sorry to hear how Mom and family is caught up in a catch 22 situation.    IMO, you need to call your local Social Services ASAP.   Please report back with updates.

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

I think this is every celiac's worst nightmare...to be stuck in a place where they have no control over their diet, and those who do don't have a clue. This article is older, but vert relevant:

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,243
    • Most Online (within 30 mins)
      7,748
    Maya Baum
    Newest Member
    Maya Baum
    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
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.