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I have Celiac disease, and I've asked this dump of a facility over and over could they please could make something, anything that I can have that has no gluten in it?


The kitchen staff had no idea about my diet, they never even heard of "gluten" before.


This place doesn't bother to listen to me, nor do they really care, and continue to service horrible food FULL of gluten...non-stop pasta, tons of processed crap and junk food.." one meal they serve us consists of 2 fat little mozzerella sticks with dressing-soaked salad and canned fruit cocktail.


Oh, and overly sweetened fruit punch and severely watered down iced tea - a way they save money.


Absolute appalling.



I've even brought down a menu so the administrator could see what I can eat. She looked at me like I had 9 heads, and asked "Have you even been diagnosed with this, is this in your medical records?"



REALLY???


Yes, I'm totally making this entire thing up up to feel like I'm special!



I said "umm...YES. I's been on my chart for 27 years, why would I make this up? go and check if u don't believe me".


She then asked someone who works here if she could bring my file to her telling me "I don't think you have any allergy, I never have seen it in your charts..I think your mistaken..." in a voice FILLED with total annoyance.


I was shocked and so appalled that this frickin lady was trying to tell me I was confused and didn't have any food allergy, like I had dementia.


She then proceeded to dispute everything on my list, and blew me off completely, telling me the kitchen serves everything I can eat, which could not be more FALSE if it tried to be.


I literally cannot eat anything they serve here, for the exception of when they serve fresh fruit or meat that hasn't been drowned in sauce, which is very rare.



Celiac disease is a very serious food allergy, and it scares me to death.


If this dumpster of a facility cannot provide me the necessary diet for a very serious food allergy, shouldn't I be able to still get an EBT card? Is there anyone who is having a similar problem or knows of a way I can be eligible?


This place could care less about special diets, diabetics included.


Two elderly men here went into diabetic coma just recently here in the same week, one of them going into another one the very following week. It's a death trap.

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It will be a simple thing for you to get your letter from your MD stating that you have Celiac. However, it would have been much easier had this serious intolerance of all glutens been made clear upon entry into the facility. They would need to prepare a completely separate meal for you, and they may have been able to explain they are unable to do so; would have saved a lot of problems.
You will not be able to get food stamps. Do know that ALF are not regulated in the way that Nursing Homes are. In a nursing home there would be state rules to cover you. ALF is much less specific care in which you pay basically a rental with some care cost levels included.
I frankly don't even believe that there are ombudsmen who check out conditions at an ALF.
From all you say I think this may not be the right place for you to stay. I would consider a move to another facility and would start interviews; do make it clear, taking your letter from MD about dietary needs with you.
Sorry you are going through this.
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Celiac Disease is not an allergy it is an Autoimmune Disease. If you are calling it an allergy, I can understand why you are not being taken seriously.

If you are allergic to Gluten or have Gluten Intolerance, those are different conditions.

But all of the above should be taken into consideration when meeting your dietary needs.

Ask your doctor for a referral to a dietitian and have them prepare a menu for the facility. Now I know you have gotten no where taking to the director, but if they get something from your doctor and dietitian they legally have to act on it.
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DrLokvig Apr 12, 2022
And contact your state's ombudsman.
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If you live in an Assisted Living and are paying for it privately, meaning Medicaid is not paying for rent, then you have too much money for Food stamps, I would think.

When u entered the AL, you should have questioned then if they could abide by your diet. Also, I would think the RN would have requested your medical records from your PCP.

As suggested, if ur not happy with the facility, you can move. Read your contract. You probably need to give 30days notice before date of moving.

I would get proof from your doctor that you have this problem. If you have a kitchenette in ur room you can prepare most of your meals. Maybe you can talk to administration asking since they can not prepare food for you, can they give you a reduction in your room and board to help offset the purchase of food u will need for your diet. I just read that Ombudsmen do oversee Assisted Livings. The AL has to provide a number. Keep a log of daily meals u are served. If u have a phone, take pictures.
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General note: Coeliac patients have suffered from the very large numbers of dietary fashion victims who have (or think they have) gluten intolerance and blame all their ills on it. Gluten is not a problem for most of these people and they won't become ill if they consume it, but true Coeliacs will pay dearly if there are traces of gluten in anything they eat. The immediate results are uncomfortable, debilitating and smelly; and in the longer term there is a severe impact on health because of malabsorption and inflammation. It IS an allergy in that it causes an allergic reaction in the gut disproportionate to the quantity of allergen consumed - you only need a spoonful of rogue yoghurt or a bite of mislabelled Brownie and you're in for a miserable few days.

I'm afraid that health and care institutions do not have a proud record on this subject. My aunt had COELIAC printed in red on her hospital notes and it made not an iota of difference - the instructions have to filter down not only to the kitchens/caterers but to the poor overworked orderlies carrying out the thankless task of attempting to get food in an edible state to individual patients in half the time required.
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BurntCaregiver Apr 12, 2022
My cousin's wife has it and if that poor woman has so much as a cracker she's in agony.
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Coeliac Disease is a very serious condition. Are you experiencing any symptoms at the moment?

So: you went to the Administrator with a list of foods you *can* eat and she responded that all of these foods are readily/regularly available on the ALF's routine menu, did she? Does the facility also provide a menu week by week for residents to indicate their choices, or anything like that (they usually do, if only to avoid a stampede for chocolate mousse)?

There are several things you can do. For example:
you can ask your PCP to prescribe certain foods
you can ask for a formal referral to a dietitian, and get instructions in writing that way
you can make a formal complaint through whatever channels the facility operates
if you're aware of other residents' serious problems, you could compile a joint dossier and send it to your ombudsman
you can post meal choices on Instagram and raise awareness of the issue

If you *were* to receive food stamps, are you able to prepare your own meals?
And if you are, what's stopping you doing that now anyway?

Then there's the more personal question, bearing in mind that "he who pays the piper calls the tune" - who is funding your care? I only ask because if you're a standard self-funding resident, it isn't obvious why you don't just vote with your feet and leave, so I guess there is some other important factor. That's actually a good thing, though, because if some public sector organization is paying the ALF for services that don't meet agreed quality standards then you can use their leverage - it's a matter of finding the right person to do the growling for you.
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caroli1 Apr 13, 2022
Most ALs have a kitchenette with a refrigerator, a sink, and a few cupboards. For safety reasons, few ALs have microwaves or burner tops/ovens. The kitchenette is not supposed to serve the functions of a full kitchen, since in most ALs all the meals are provided and are included i one's rent. It would be quite difficult to repair one's meals there on a regular basis unless you ate no hot food. In addition, since you are paying for all of hese meals, if you were purchasing your own groceries, you'd essentially be paying twice to eat, even though you would be eating very little of the meals the AL is providing.
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You don't qualify for food stamps if you're in assisted living. Your income is too high. Food stamps are for people who are low-incomed and cannot afford groceries.
Since you don't have dementia, you're still in charge of your own life and decisions. Why do you remain at this AL? You can relocate somewhere else. Your doctor can call the administrator of the place and explain to them that you have Celiac disease. You may be able to qualify for a meal delivery service like Meals-On-Wheels who will accommodate your special dietary needs and restrictions. There are also charitable organizations like the United Way who help pay for meal service. You obviously have access to a computer and internet so research some and help yourself.
Celiac is very serious. My cousin's wife has it and she can't have anything with flour. Even if it's a tiny bit like to thicken a gravy or sauce, she will get so sick. It's no joke.
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Christine44 Apr 12, 2022
"You may be able to qualify for a meal delivery service like Meals-On-Wheels who will accommodate your special dietary needs and restrictions." This is untrue, based on my experience. This person may be able to qualify for MOWs but "accomodating special dietary needs & restrictions" would surprise me, even though we are moving out of the Pandemic.
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Well its now the 12th and no response to questions.

I have a feeling OP may be on Medicaid. Thats why asking about food stamps. If so, he only gets maybe $50 a month in spending money. If this is so, he has a caseworker. The caseworker can put him in touch with the appropriate people who can investigate his problem. APS can investigate. I have a feeling he is in a group home.
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Contact the Ombudsman of your facility or your state. They are to protect the patient/resident of nursing facilities. My moms Ombudsman was amazing and advocated super hard for my mom and she new all the elderly laws that protect my mom and her rights for a quality of life. Hope that helps some.
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@Christine44,

I don't know what your experience with the Meals-On-Wheels program has been. I only know what my experience with this program has been for almost 25 years of in-home caregiving service. Many of my former clients were on the program.
They will accommodate special dietary needs and restrictions.
I have seen kosher and halal meals delivered through their program for Jewish and Muslim people. Vegetarian meals too, so I'm pretty sure gluten-free isn't impossible for them.
Granted the food isn't great, but it's better than going hungry. It would certainly be worth the OP inquiring about it. The worst they can say is 'no'.
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For those suggesting that the OP get a "doctor's order" and "by law they must comply"
or
"call an ombudsman"
or
other methods, do know that Assisted Living Facilities are not regulated in the same way that Nursing Homes are ordinarily. They are more or less "rentals" with agreements, levels of provided care, assistance with medications, and etc. They are almost always self pay and they almost always provide thorough intake explanations of services, fees, how regulated, diets, care plans and other provision.
Just know that often Assisted Living Facilities are differently regulated and not so tightly regulated as Nursing Homes.
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