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Nursing Home Care—The Great Challenge for the Celiac

Scott Adams

By Scott Adams
in Publications & Publicity

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Scott Adams Grand Master
Scott Adams
Posted
aging_CC--William_Cho.webp

The woman's voice, polite but firm came over the line: "We cannot accommodate your mother." "You can't accommodate her?" I wondered if I'd heard wrong.

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cyclinglady Grand Master
cyclinglady
Posted

This is my worst nightmare!  Forget my kid's college education, I'll need to save for caregivers!  

Gemini Experienced
Gemini
Posted
36 minutes ago, cyclinglady said:

This is my worst nightmare!  Forget my kid's college education, I'll need to save for caregivers!  

Long term care insurance!  I am looking into the cost for this because if you buy the right kind, they will pay for in home care.  It has made all the difference with my father, who is suffering from dementia.......probably from undagnosed Celiac! 

squirmingitch Veteran
squirmingitch
Posted

I seriously doubt my hubs & I can afford long term care insurance. He is a disabled Vietnam veteran & the disability compensation does not stretch very far.

This is something I have feared ever since finding out I have celiac and then another hit when we discovered the hubs does as well. I am terrified that nursing homes will not be prepared for a celiac and the diet we require without cross contaminating us left & right. I envision the return of the awful celiac rash and them putting me in restraints because I can't stop scratching myself. It's a nightmare that plays over & over in my mind. They'll probably rub Aveeno lotion all over me. Let's coat her lesions in oatmeal! Hell!!!!! Sheer hell!!!!

On top of requiring a gluten-free diet, what about those of us who can not tolerate certified gluten-free oats? Those of us who can not tolerate soy? The list goes on.

What about people who have anaphylactic reactions to peanuts or shell fish or eggs or dairy, tree nuts or any number of foods? Are these people being cared for now? I doubt it if they can't even handle diabetics or kidney diets.

Bleak. I see the future as very bleak.

SLLRunner Enthusiast
SLLRunner
Posted

This article almost made me cry. 

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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