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Nursing Home Care—The Great Challenge for the Celiac

Journal of Gluten Sensitivity Winter 2016 Issue - Originally published January 5, 2016

Celiac.com 03/30/2016 - The woman's voice, polite but firm came over the line: "We cannot accommodate your mother."

Photo: CC--William Cho"You can't accommodate her?" I wondered if I'd heard wrong.

"No. We just had a team meeting and it was decided we cannot accommodate your mother because of her diet."

"Oh." The line hummed as I took in both the news and the woman's frosty tone. The previous week the woman, the admissions coordinator of the nursing home, had been all warm and inviting, even eager to have my mother.

Finally I came out with, "Well…thank you for letting me know," and the line clicked dead as the woman hung up.

I had not seen this coming. I hadn't realized that a nursing home would, or could, turn down a patient based on the need for a therapeutic diet. I thought the reason for a nursing home was to care for ill people.

When I toured the nursing home, the woman proudly proclaimed the facility as being on Newsweek's top recommended list, and gave the appearance of understanding my mother's gluten-free diet, saying, "My niece has told me of it. She's convinced me to eat more gluten-free." The woman went so far as to take notes on my mother's preferences, her love of sleeping in and drinking coffee, and then plopped in my arms a thick packet of Medicare forms. In all ways she had been exceedingly pleasant. Indeed everyone I met at the facility had been pleasant. Purring cats roamed the facility's hallways, birds sang from cages, and they even had a pot-bellied pig in the shade of a tree that could be seen through a window, all for the comfort of the patients. It struck me that they could do these many things for their patients, but feeding one small woman with celiac disease a gluten-free diet was beyond them.

My mother is eighty-eight years old, a pixie with a contagious smile and genteel Southern manner. She was diagnosed with celiac disease at the age of seventy-five. At that time she was on daily use of a nebulizer, sleeping half days and could not leave home and the bathroom unless she took Imodium. The diagnosis and strict adherence to the gluten-free diet returned her to an active life. She took up painting and driving her aging neighbors out to enjoy shopping.

A year ago, in rapid succession, a mass was found in one of her lungs, glaucoma took her sight and a stroke impaired her right hand and memory. For months, she required caregivers around the clock. Today she is mobile with the aid of a walker and can manage nights on her own. She can do one thing for herself, and that is get herself to and from the bathroom. Everything else must be done for her—bathing and dressing and maintaining clothes, medications, food preparation, working the television and her bedside radio. On occasion she will get confused and afraid, so I try not to leave her alone for more than an hour. With the aid of private caregivers and hospice assistance, I have been able to keep her in my home, where she has lived for the past six years. However, her funds are depleting for private care, and there is no one to help me care for her.

After the disappointing phone call from the nursing home admissions coordinator, I sat thinking over all the above facts and allowing myself a sizable hissy fit. Then I gathered myself together and took another look at the nursing home facilities in my area.

For the next two weeks, I sought more information and made lists. My plan was to be better prepared in knowledge and approach. Running on the theory that it is lack of knowledge that causes the fear of a situation, I put together information on my mother: a list of her conditions, needs and food preferences. Because of no longer having teeth, nor wearing dentures, and her advanced age, she needs soft foods, her favorites being eggs and Vienna sausage, puddings, bananas. At the time she would eat mashed chicken and some vegetables, all simple things. I wanted to reassure the admissions director and staff of the nursing facilities that my mother was easily cared for, and that I was willing to help with her food. I also had two brochures from Gluten Intolerance Group: a single sheet on celiac disease itself, and a color glossy brochure, put together in cooperation with the National Foundation for Celiac Awareness, entitled Celiac Disease in the Older Adult. I hoped to engage the interest of people whose primary aim and business is providing healthcare to the elderly.

What I discovered is a general lack of any interest in the welfare of the elderly.

The young woman admissions coordinator of my second choice of facilities, a modern, airy facility, answered my question about their kitchen and possible meeting with the dietary manager, with, more or less, "I've shown you around the building. I don't know what else you want to know." Then she added, "And right now we don't have any female beds available."

At another facility, the admissions coordinator brushed aside any idea of speaking with the dietician. She did not know what celiac disease was, but assured me they could, "probably handle it."

The best facility that I found had a waiting list of at least forty names. They stayed so full that they did not provide temporary respite care. Even so, the admissions coordinator showed me around the building, which was very old, and the sight of an elderly blind woman slumped uncomfortably in a wheelchair in the hallway haunted me. Yet their menu posted on the bulletin board seemed promising. "We do home-cooking," the coordinator said proudly. Then she glossed over my request to see their kitchen and meet the dietician. She admitted to never having heard of celiac disease, but said, "We've had many people with uncommon conditions," and put my mother's name on the waiting list. My eye followed her fingers working the pen far down the yellow legal pad. When I offered to leave the brochures about celiac disease with her, she did not even glance at them, but dismissed them with a sweeping wave, saying, "Oh, there's no need."

Weeks passed. My mother's hospice social worker joined in on the search. She found a facility willing to give the respite stay a chance. "They've had a previous celiac patient," she said.

By now I was quite skeptical, but also curious with this news. The facility she suggested was the closest near my home, and I could easily visit each day. I agreed to meet with the admissions coordinator.

The woman said that, yes, the facility had had a previous patient with celiac disease. It was the experience with this patient, who had been uncooperative and would steal food off other patients' trays, that caused the hesitation on their part. "But we're told your mother wouldn't do that," she said.

Upon studying the fact that my mother was quite incapable of snatching food anywhere, the admissions coordinator said they were willing to offer respite care. I was impressed (surprised is the better word) when the coordinator called the dietary manager to meet me. He read the diet listing I had made up for my mother and said they would have no trouble in providing for her. I volunteered to bring her favorites of chocolate pudding and canned peaches and Vienna sausage for times they might have things she could not eat, and of course any homemade gluten-free cakes.

We packed my mother up, and she went for her week respite at the facility. Her long-time caregivers went as well to provide support in the strange environment, help her learn her way to the bathroom, and to circumvent the inevitable glitches.

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The first day for lunch in the dining room, my mother was brought Vienna sausages (which I had provided), nothing else. My mother's caregiver went to the kitchen and inquired of the cooks, surveyed the kitchen and the menu of baked chicken and broccoli and how it was cooked and said, "She can have that." We began to wonder how the previous patient had been fed. I also began to wonder if anyone even glanced at the diet I had printed for my mother.

However, the glitches that week were small. My mother ate well, enjoying their broccoli and branching out to embrace canned spinach. We learned the main reason the facility could and did for that week, succeed in feeding my mother quite well was that they had a full working kitchen and did not rely on food service, where all the meals come prepackaged.

The respite week also worked because of my mother's private caregivers. They monitored the food and educated the kitchen staff. The dietary manager went so far as to voice his gratitude to one of the caregivers for helping them learn what my mother and could not eat.

While it appeared no one read any of the dietary information, over all the stay went well enough that a month later, I decided to try it for long term care. The plan was to have her private caregivers ease my mother through the transition for approximately a month, and then gradually reduce their hours, as the nursing home staff learned my mother's needs. We believed it possible to educate the staff.

The first week went fairly smooth, with a few expected glitches. After that, things went downhill. A semi-soft diet had been requested; this never materialized. My mother's food would be placed on her tray in her room, and left, covered. Either my mother's private caregivers or I had to come in and help my mother eat. Mom's private caregivers continued to mash any meat and large chunks of vegetables, such as sweet potato served still in the skin. They continued to intercept sandwiches on bread and dishes of cake and snack cookies left on her tray. Throughout all of this, my mother's caregivers or I consulted with the dietary manager and the kitchen staff. We thanked them for the good food when it came. We explained again what she could and could not have. We formed the habit of checking each day's menu and writing out foods from that menu that my mother could eat. The kitchen staff accepted these menus and taped them near the stoves. When there was nothing on the menu that my mother could or would eat, we suggested easy canned substitutions. Sometimes she got these substitutions, sometimes not.

Then came the day when I was told that for the evening meal my mother had been served a hotdog and fries of some sort, both too hard for her, or anyone, to eat. (Keep in mind we are paying for this food.) My mother's caregiver took her back to the room and served my mother her snack cakes and pudding I had provided. Her roommate shared in the cakes, because she had come in too late from her dialysis treatment to get dinner. Why her tray had not been saved for her, I have no idea. I had never seen this woman provided any sort of special diet, and she was both diabetic and had kidney disease.

The following morning I also I learned one of the kitchen staff responsible for following the therapeutic diet said to my mother's caregiver: "Oh, she doesn't need that diet. That's all made up."

I faced the fact that providing for my mother was too much trouble for the staff, and they were simply unwilling. My mother was never going to get the food nor the care in eating that she would require at this facility.

As of this writing, my mother is back home. Private caregiver hours have been drastically reduced. I am able to do this, for now.

Here are some chilling facts: Studies indicate that today in our country not only are the incidents of celiac on the rise in all age groups, but the median age for celiac diagnosis is just under 50 years of age, with one-third of newly diagnosed patients being over the age of 65.* (Celiac Disease in the Elderly, Shadi Rashtak, MD and Joseph A. Murray, MD)

This is the age group who are the primary caregivers for themselves and their parents. This is the age group who more often must undergo surgeries and stays in rehabilitation nursing facilities.

Couple the above figures with the fact that we are an aging population. At the current rate, the number of people age 65 and older is projected to double between now and 2050. The baby boomers, responsible for the great population growth, now average over the age of 65.* (An Aging Nation: The Older Population in the United States, by Jennifer M. Ortman, Victoria A. Velkoff, and Howard Hogan, U.S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau.)

These simple facts paint a picture of a growing challenge. We must be able to provide short and long term nursing home care for the many celiac patients around us today—my mother, myself, the number of over-60 celiacs I've talked to—as well as the tidal wave looming on the horizon.

In addition, we have other food intolerances on the rise, and we have the needs of those with diabetes and kidney disease and other conditions requiring dietary restrictions. At present, all of these people, not only those with celiac, are being overlooked and discounted.

I have no solid answers to this immense problem. I do have suggestions on things that can be started.

The celiac community must recognize and begin to talk seriously about the problem of dietary care in nursing homes. Printing up a glossy brochure with the advice to have the doctor write an order for a therapeutic diet is a start. We have to step out more aggressively with ways to educate and implement therapeutic diets in a real way. We have programs in place educating restaurants and the food industry. Let's get aggressive with the health industry.

Of course, my experience is that these facilities do not want to be educated. This is where legislation is required. We need to lobby for legislation that requires compliance in the nursing facility industry, in the same way that food labeling compliance was attained.

Further, we need to support the push for legislation for a required number of CNAs per patient in nursing home facilities. At present, there are laws only governing the minimum number of RNs required per patient in nursing facilities. * (Minimum Nurse Staffing Ratios for Nursing Homes, Ning Jackie Zhang; Lynn Unruh; Rong Liu; Thomas T.H. Wan, Nurs Econ. 2006;24(2):78-85, 93.) There are no mandatory minimums for the number of CNAs, the people who actually do the bulk of the patient care—those who would monitor a person's diet and help that person to eat. At present the nursing home facility is allowed to choose for themselves the number of CNAs they need.

I remarked to a friend that there were a number of camps for children with celiac disease, places the child could get away and enjoy and eat safely.
"Well, what about for the elderly?" my friend said. "It seems if they can do it for kids, they could do it for the elderly."

What about the elderly? This is our new challenge—to make certain those elderly people with food sensitivity needs are well cared for.

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37 Responses:

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said this on
30 Mar 2016 11:33:56 AM PDT
People with celiac should not have to fear a place that is supposed to provide us with humane care. It is not that hard to train staff to accommodate our diet. The results of not adhering to good celiac safe practices could not only impact the quality of life but the length of that life as well.

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said this on
30 Mar 2016 1:44:12 PM PDT
Thank you for your poignant and depressing look at finding care for your mother. At 65, I have also wondered how I will get through the last years of my life. I have celiac disease and am unable to tolerate fragrances, such as baby powder, center candles, perfumes, cleaning products, etc. I often hope that I'll go suddenly rather than have to endure care under people who deny the existence of these problems.

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said this on
05 Apr 2016 8:00:54 PM PDT
I hope that young people will see the need and begin opening up gf nursing homes. I don't really care, if they give me gluten, they will have a mess to clean up, I will dehydrate and die sooner. Who the hell wants to live in a nursing home anyway! Not I! This living longer is for the birds! Quality, not quantity for me.

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said this on
04 Apr 2016 8:36:49 AM PDT
I can totally relate to your fears and hopes. I am 77 years old, a celiac, suffer many food intolerances besides gluten, plus have fructose malabsorption and the sensitivities to smells that you mention. I also pray that I will pass suddenly and quickly, rather then to suffer at the hands of ignorance.

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said this on
07 Apr 2016 4:38:08 PM PDT
Robena, I pray that things will get better before the good Lord takes you Home. You are important!!! My hope and prayer is that legislation passes a law stating dietitians MUST follow each persons diet and special needs no matter what! I'm sad that so many like you say I'd rather go suddenly... Please don't give up hope! Blessings~

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said this on
24 May 2016 2:37:34 PM PDT
Sister, I have the same problems you have. Am needing a full shoulder replacement surgery. The food issue in a nursing facility scares me more than the surgery.

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said this on
30 Mar 2016 3:27:28 PM PDT
Thank you for bringing this up. I had some minor surgery last year and the hospital staff had no idea what to substitute for the crackers they usually give someone coming out of surgery. I couldn't believe it.

I had never even considered how bad it could be in a nursing home.

Knit Yeah
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said this on
01 Apr 2016 4:14:13 AM PDT
This is deplorable, sad, inexcusable, and TERRIFYING! Appears to be a huge entrepreneurial opportunity for consultation, education and political activism. I am also always concerned if I am in need of immediate medical assistance and family is not around, whether I will be given medications containing gluten or dairy, which could exacerbate the condition(s) and confuse the issues or might even kill me...... I am not a senior, but will be some day.....Just Terrifying! Thank you for this article!!!!

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said this on
01 Apr 2016 10:25:06 AM PDT
This is a great article. I am celiac and have wondered what I would do in this situation. This article makes mention of the actual food, it doesn't touch on the ill effects that the bad food causes the patient. The symptoms are terrible and I can imagine will be treated with sedation. I pray that answers are found soon. This is a serious problem and people are dying due to not having the proper nutrition and diet provided to them when they are incapacitated and in desperate need. This is my biggest fear for myself.

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said this on
04 Apr 2016 6:21:54 AM PDT
My MIL did not have celiac, but I was pleasantly surprised to find that the nursing home she went to was well aware of the requirements of a gluten free diet and the entire facility went gluten free once a year. If you need a gluten free facility, check out Jewish facilities. Because of the Kosher dietary requirements and the fact that there are celiacs in the Jewish community, they tend to be more aware of and more sympathetic to celiac dietary issues. My MIL was not Jewish but she received excellent care.

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said this on
05 Apr 2016 8:05:14 PM PDT
K2, that is comforting, thank you.

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said this on
04 Apr 2016 9:21:56 AM PDT
Well I was recently in a hospital where you think that they would have gluten free food for celiac. No they did not I really gave them a piece of my mind. I Even said why can't you go to Walmart and get some gluten free food? I think it is ridiculous that they will do it for diabetics, people who have high cholesterol, etc. but not for celiacs just because it's a little more work to make sure no contamination in food or making sure no gluten is served. I was in coma for 4 days in hospital over 20 in rehab all because of gluten I even had to learn to walk and talk again. That was back in 2006 and I had to have my family bring me in GF bread so I would have it to eat with meals or make sandwiches. Now I did have one facility ask me if I had any recipes and they would make it for me so I gave them homemade tomato soup and peanut butter cookies and they made it for me . Also they went out of their way to even go to the store to get some other gluten free food. I know there is no way that I can have gluten again but don't understand why they can't accommodate people like us. I'm worried because what if I get down I won't be able to get in a home due to having celiac disease.

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said this on
04 Apr 2016 11:03:16 AM PDT
This is where the celiac groups needs to push for legislation. I fear that this will be me in a few years. Although my mother did not have celiac she many intolerances and I lobbied for for her when eventually had to be in a nursing home and monitored all her food. It was extremely difficult.

Bonny Fazzi
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said this on
04 Apr 2016 11:33:51 AM PDT
Very timely article for my family. I care for my 93 year old mother with 'severe' celiac disease. I recently found out that there are no completely gluten free senior care homes in our area. She, like your mother has numerous other issues, my mother's include cognitive disconnect. She is not indigent (but also not wealthy,) so she doesn't even qualify for a caseworker, to help walk us through this process. I am depressed and stressed, and this entire process is overwhelming. Thank you for this article.

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said this on
04 Apr 2016 11:51:26 AM PDT
This sounds like a lawsuit to me! Not just for your mother, but for others too. Especially if it's public funded then they should be required to provide meals that are gluten free.
I give credit to the one person saying they can't handle gluten free- I know nursing homes in my area hire who ever they can get... some people without a high school diploma and no training who are the chefs. It's sad because a lot of elderly have dietary restrictions like sugar, gluten, etc. I'd rather someone tell me they don't know or can't handle it then lie and make me sick!
It's also horrible that you had to intercept food. How many elderly people have someone who can watch them that closely?

Mary Beaudoin
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said this on
04 Apr 2016 12:25:55 PM PDT
I don't know what state or country you are from but in every state that I have worked in the US on of the standards of practice include a doctors order for a diet that meets the patients needs be it regular diet, or a specific therapeutic diet.
The consistency of the diet is also by doctors order. If these are not followed the facility would lose its license.
I am a 68 year old retired RN and have worked as a nurse for 45 years and have had many patients with a variety of therapeutic diets.

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said this on
04 Apr 2016 12:33:50 PM PDT
The courts have ruled that colleges must provide gluten-free food to students with celiac disease under rules established by the Americas with Disabilities Act. Surely the same rules would apply to nursing homes and assisted living facilities? Anyone brave enough for a law suit? I'd like this problem to be solved before I end up in one of these places.

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said this on
05 Apr 2016 1:07:07 PM PDT
I agree with the ADA comment. If the supreme court has ruled that Celiac disease is protected under the ADA, then the nursing home has NO CHOICE but to comply with a STRICT GF diet or else face a lawsuit. Knowingly disregarding it or being negligent about it is a lawsuit waiting to happen... I have thought about nursing homes many times (even though we currently are nowhere near that stage), which is why I always encourage people thinking about getting tested to get an official diagnosis and not to just trying going GF on their own...you need that diagnosis for a 504 plan, and to have it stand up to situations like this. I would love an update if you call your favorite nursing homes back and tell them that they are required by law to accommodate your mother!!! Good luck!!

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said this on
04 Apr 2016 12:42:02 PM PDT
I am looking at 76 right now and have been a celiac for the past 17 years, my spouse has taken excellent care of me for those years. Now I fear what will my years be if she does not out live me?

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said this on
04 Apr 2016 2:05:49 PM PDT
Thank you for posting this article. Several years ago a friend required emergency hospitalization at a state psychiatric hospital. No one on staff knew what celiac disease was and had no clue a about the gluten free diet. At one point a nurse told her to peel the French fries to eat the center since she, my fried, was worried about cross contamination from the fryer. She was forced to exclude something off her tray at most meals. She was their four days before a dietician spoke with her about the gluten free diet. I'm scared about ever having to be an hospital inpatient.

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said this on
04 Apr 2016 3:12:17 PM PDT
Your experiences in trying to find a nursing home for your mother that would accommodate her celiac disease reminds me of several experiences I have had while I was a patient at two hospitals. The first refused to feed me at all, even not letting me use a microwave located in a locked room directly across the hall from my room. All of their food is brought in from an outside kitchen, and they have no control over gluten, lactose or any other ingredient.

The other hospital had a form of room service, but all of the choices except hard-boiled eggs and rotisserie chicken had gluten. The choices were unhealthy foods like cheeseburgers, pizza, and hot dogs. When I complained about the lack of healthy food to the hospital dietician, she replied, "Healthy food isn't popular."

My primary care doctor agrees that healthy food is not considered important in treating illness, and said that the major medical center where she works would not be able to provide proper food necessary for my health.

It is a sad and discouraging situation that people with special dietary needs face in dealing with medical providers.

sandy w.
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said this on
04 Apr 2016 3:17:06 PM PDT
I agree with what everyone has said so far. This is a problem which needs action in the immediate future. I am the leader of a support group for those with celiac Disease / non-celiac Gluten Sensitivity, and this very subject has been a concern to me for some time. I did, at one point, last year begin canvassing local nursing homes for information as to which ones could accommodate those who need a GF diet. My research showed that, in general, NOT ONE of the nursing homes I contacted could provide a safe, GF diet.

I was told when I was diagnosed with celiac disease, that we celiacs were covered under the Americans with Disabilities Act. Well, maybe so .... but it appears that what we may have been told, is actually not enforced.

I would be interested in knowing if anyone -- anywhere-- knows of a reliable nursing home that can assure their patients of a safe (non-contaminated) Breakfast, Lunch, and Dinner menu ??? I am sure that there are some nursing homes who would qualify -- but at what cost ? the average patient requiring nursing home help, I would guess, are close to 80 years of age or so, and their funds are on their way to depletion !

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said this on
04 Apr 2016 3:29:10 PM PDT
I have thought about this problem myself when my mom was in an assisted living home and realized if I end up in one I am up a creek. The health care field in general needs to be educated about this important and critical issue. This includes hospitals as a commenter above mentioned. I myself have been a victim of uneducated nurses - and doctors - who have absolutely no clue about celiac disease. I went 24 hours without any food in a hospital that always is rated highly but yet no one could find any food that would be "safe" for me. I was offered a non-GF sandwich by a nurse - after explaining celiac. Really? I agree with the author of the article that something needs to be done via legislation. Very scary.

Sue b
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said this on
04 Apr 2016 8:28:45 PM PDT
Even before I read this article I worried that if I ever had to go to a nursing home, no one would know about celiac disease and I would always be really sick. How scary is that!!! I pray that something is done about feeding & respecting those of us who need a GF diet. We would do it for them...

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said this on
04 Apr 2016 8:51:47 PM PDT
We absolutely have to push our congressional representatives and senators for legislation. There has to be at least one nursing home in every state that is completely gluten-free, staffed entirely by gluten-free staff. It should be legislated that all medical and nursing schools teach an entire required course on gluten induced autoimmunity throughout the body, and all students need to research and report on five different such diseases besides celiac. And whoever can afford it needs to sue the FDA to ban gluten in all medication, both prescription and over the counter. We are the most discriminated against of all groups. We are essentially targets of genecide.

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said this on
04 Apr 2016 10:59:30 PM PDT
It is true sadly all true. I was in the hospital then in Rehab twice in two different Facilities. All three places had Kosher marked food but non were prepared for gluten free celiac patients. It was a nightmare. I had to have food brought in. Everyone was aware of what celiac is but no one was able to explain why they do not accommodate with gluten free products.

Lee Bundy
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said this on
04 Apr 2016 11:00:07 PM PDT
I have celiac, an 84 year old lady and fear the future if I need care from a facility. My daughter is on a GF diet. What will happen to both of us if we can no longer care for ourselves? Thanks for all these posts. A real eye opener.

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said this on
05 Apr 2016 4:42:42 AM PDT
I'm relieved to see this article. I had to bring all my own food to the hospital when I had a hysterectomy last year, and they were unable to accommodate my needs (microscopic colitis and celiac). It's shocking to me that basic meat and vegetables or fruit wouldn't be the standard in places where health and nutrition are critically important, but my offerings were all refined grains and sugars, meat patties with fillers and chemicals, and very little actual whole food, which would be best for everyone anyway.

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said this on
05 Apr 2016 8:09:31 AM PDT
Hello, which State are you in? I'm hoping it is not that difficult to find accommodations for my celiac disease! Very depressing article, when you are at the hands of someone who doesn't have a clue. I hope I am of sound mind when I have to go into a nursing home, so I can NOT eat a sandwich on regular bread, or they will have to clean up the consequences!

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said this on
05 Apr 2016 8:41:30 AM PDT
Wow! Thank you so much for your eye-opening article. It should have come as no surprise, given the way most facilities are run. Started with the best of intentions, they become warehouses for adults who have lost their rights and receive little or no respect. The comments are illuminating, too. To think that a hospital could not provide gluten-free food is astonishing. There is obviously much to be done, both for us and for those with other important dietary restrictions. I'm not good at this sort of thing, but if anyone wants to start a petition, I would be happy to sign it - as I am sure we all would. And of course any follow up that could be suggested would be great. We have one very good (as in pro-active for the people) DC politician here in southern Florida, and I know I will be sending this whole string to him.

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said this on
05 Apr 2016 9:00:57 AM PDT
I have postponed my knee replacement surgery for just this reason. Both hospital and nursing home cannot provide me with a diet I can eat. Many times I have had to bring in my own food because of this. I don't get a credit on my insurance bill. The conditions in nursing homes is deplorable. I have worked as a NA for years. I have had to care for 15 patients at a time. They are all fed the same meals, no matter what. The whole medical industry needs an overhaul. I dread when the time comes I cannot live alone. As others have said, I hope I go quick.

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said this on
05 Apr 2016 9:07:15 AM PDT
I was in the hospital 4 times in 2014. They had no idea how to feed me and my husband would go out and get food to go that I could eat. We also brought a suitcase full of food I could have. I've worried what would happen if, one day, I had to live in a nursing home.

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said this on
05 Apr 2016 4:47:25 PM PDT
I'm 56 and I have the same fear. I have many other food sensitivities in addition to gluten. Eating out is a nightmare and I live in fear of having a hospital stay.

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said this on
06 Apr 2016 2:47:37 PM PDT
Excellent & terrifying article! Thank you for sharing your story. Legislation is definitely needed to protect celiacs from abuse and neglect in medical facilities, nursing homes, and the like.

The truth is the legislative changes need to START with our insurance companies. When I was diagnosed with celiac disease nearly 2 yrs. ago...after suffering with Irritable Bowel Syndrome for over 25 yrs....BCBS would NOT cover my visits to a registered dietitian. They would cover this for a diabetic, but NOT for a celiac! This makes no sense considering the treatment for celiac is nothing BUT education & diet!? Insurance companies need to be accountable to celiac sufferers just as medical facilities & nursing homes need to be! It is extremely difficult to know everything you need to know to survive with celiac disease. Although I continually research gluten issues such as cross contamination, I did not learn that I could get glutened from sealing licking an envelope/stamp until about a year after diagnosis! I heard that a celiac nun struggled with gluten cross contamination issues for several months before she learned it was the communion wafers that were made of gluten.

And, unfortunately, many people (who are not yet aware they are being affected by a gluten-full diet) think that it's no big deal if a person gets glutened. They figure it's just a little diarrhea, so big deal. What they don't know is that it will kill us over time...that it's an autoimmune disease, which greatly increases our chances of getting colon cancer, diabetes and an long list of other conditions. This is just one more reason celiacs need to work with registered dietitians - to learn how to survive gluten free and avoid the potential outcome of ongoing cross contamination.

Is there a lawyer type person out there who can initiate the legislation needed to protect U.S. citizens who once trusted the government (the FDA) that allowed modified wheat in our food supply WITHOUT first testing it on humans?

But I digress...or do I?

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said this on
10 Apr 2016 6:37:44 PM PDT
Remind me to shoot myself in the head before this happens to me.

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said this on
29 Apr 2016 11:26:44 PM PDT
This article expressed a concern that I've had for a long time. I have both diabetes and celiac disease. My father is in a retirement home so I get to see first hand the problems that could happen to me should I end up not being able to live on my own. It's very depressing.

Speaking of depressing, I don't think you could have chosen a more awful photo to accompany this article. There are many more flattering photos of elderly people that could have been used.

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said this on
31 Oct 2016 5:38:15 AM PDT
I said this earlier when this article came out but I'll repeat it for anyone that missed it. The Jewish facility my MIL was in was well aware of celiac and requirements of the gluten free diet. The entire facility went gluten free during Passover. My MIL wasn't Jewish but they provided excellent care for her. If you must put a loved one that requires a gluten free diet in a facility, check out Jewish facilities in your area.

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Yes but...

I didn't read that far. Yikes... A hefty dose of perspective in that one. For anyone reading this is the post:

Hi! I'm new to the Celiac world. I have been gluten free for around seven months, but still seem to get glutened on a regular basis. I have been sick since January '16 and think that is when it triggered, but I didn't realize until October what it was. By that time I was pregnant with my little boy who is due in June. I also have an almost 4 year old daughter. I am really torn and wondering if I need to really be tested? I have very strong suspicions that I am a true celiac because my aunt has been diagnosed. Part of me says it doesn't matter, just live gluten free and assume you are, but the other part says I need to get tested so I know if my kids are at risk. So far my daughter is fine. She was grain free until after her first birthday, I plan on doing the same with my son. But I also don't want them to suffer the way I have. What would you do? The reason I don't want to get tested is I don't want to start eating it again and feel terrible while I have little kids, last year was so hard and I just want to get strong again. I also plan to bf for a few years and don't necessarily think it's a good idea to eat gluten while bf right? Thank you!

Welcome too! Sorry to hear you're suffering now. If you can nail the diet you should improve. You should also think about vitamin supplements. There's a good chance that you're suffering from one or more deficiencies as a result of the affects of celiac on your intestine's capacity to draw nutrients from your food. A good multi vitamin is a must, just make sure its gluten free and see if your doctor can refer you to a dietician as Lochella's has.

Oh I had heard his name and read some stuff about him but hadn't come across this video! Thanks!!