Senior Citizens and Celiac Disease
In my family, we care for our elders ourselves. We have generations of experience with being tolerant of each other, and the highest priority is the wellbeing of each person. Live and let live is a very good motto, but not if it means ignoring overmedication or a lack of proper care. I suppose it was necessity that drove my family always to live in multi-generation groups. But it's more than just tolerance and necessity. It’s being capable of helping someone else bathe or dress without making value judgements, or getting depressed and ruminating about mortality. Today’s happiness and dignity is more urgent. I think having your grandparents near is valuable, and to do it successfully, a person must have an uncommon commitment to that goal.
Until I was an adult, the idea that caring for elders might be a burden never entered my mind, I never examined it, and probably others haven’t either. Today, most seniors will want to move into senior housing, if not assisted living, at one point or another. The reasons for this are many, but it's worth warning that many marketers of such housing prey on the fears of the elderly and tell them "you don't want to be a burden, do you?" It might be worth it to discuss whether or not this is a concern for our relatives, but it’s clearly a marketing ploy that isn’t very nice.
The fear of being a burden was exactly the reasoning that led my mother in law to opt for housing that did not suit her as much as the brochures did. When the situation broke down, my husband and I did all we could for her and my father in law (he suffered a stroke and wasn’t yet recovered). After a long process of moving here and there, my brother in law now cares them, in his own home, and the situation stabilized. Was it stressful, expensive, and full of dramas and perils? Yes. But it was worth it. She needed to feel like her life was under her control, and there’s no price on that, nor should there be.
Just like my in-laws, most seniors will spend some time in senior housing, and maybe their last years. That's where there is a snag in the gluten free world. The ‘snag’ is probably more central to many Celiac debates than we might recognize right away. Food allergies, Celiac Disease, and gut problems of all sorts, are on the rise in America. And usually, you need at least two specialists to have them properly diagnosed. Plus, the first generation of people diagnosed with Celiac when they were children (around 1950s) are nearing their 70s and 80s. Another wave was diagnosed in the 1970s, using the modern test (the tissue Transglutaminase test) and they are in their 50s and 60s.
If you have Celiac genes, the risk of triggering them increases with age. If a doctor suspects you have Celiac, they may send you to a gastroenterologist who will probably only do a tTG and total IgA test (a screening). This test is negative until after gut damage has occurred several times and it will be a false-negative if you've been gluten free for longer than a week or two.
An enlightened doctor will also send you to an allergist to check for IgE allergies for the most common food allergens (including wheat). But, by the time you get to the IgE test, you've seen that allergist at least 4 times, in most cases. This may be a financial burden on seniors.
A much faster and cheaper way is going to a direct to consumer lab. These are medical testing labs that often provide tests without a doctor's prescription. They have been available since the 1990s, and a few are listed in the Resources of this blog. This way, you can bring the results to a doctor to have them interpreted.
However, if you go by the cheaper route, you are likely to encounter negativity because you did lab work that was "probably unnecessary." But stay strong. If you went undiagnosed for decades, then you may already exhibit secondary illnesses such as thyroid disease or diabetes, leading to even more specialist visits, but there's no easy way to circumvent that, and if the source turns out to be gluten, then you still got a shortcut.
Why single out seniors for diagnosis problems in later life? After all, we all have these diagnosis challenges. Well, 1/3 of all new Celiac patients are over age 65. (See References #4) And 83% of people with Celiac Disease, across all age groups, are undiagnosed. This makes it imperative that senior housing should provide a safe gluten free meal choice for those who need it. The senior housing would ideally offer proper gluten free options without cross contamination in the kitchen, and a staff properly trained to avoid sickening those sensitive to gluten.
All of this is expensive. We all wish it wasn’t so. We all hope that a drug will come out to save us from this complexity. But even if it does someday, it won’t be in time to benefit the current seniors who need the gluten free diet.
The need for Celiac safe food preparation drives twin, but opposing, forces in the national dialogue about gluten free. On the one hand, gluten free options are here to stay, and the need for them will only increase. Major food manufacturers are already preparing to provide it, or already do (Heinz and McCormick are far in advance of their competitors in this area.)
On the other hand, providers of senior care are experiencing the same sticker shock that we all do when we ‘go gluten free’. At the moment I still see articles that attempt to paint Gluten Sensitivity as something made up and not real, simply because no medical test has been designated as the "gold standard" for it. In a few years, that passive aggressive tactic will probably die out as more and more research is completed, a new test is provided, and more kitchens are designed with allergies and gluten in mind.
I've volunteered for seniors for many years, and.with the exception of community centers, the kitchens I've seen in senior living facilities are enormous, with more than enough space for a dedicated gluten/allergen free preparation and storage area. The real issue is training. Who will train? Will there be a certified GF food prepper designation, and will it cause an increase in pay? I like the idea of ‘gluten free’ causing an increase in food service wages. But I can understand the business instinct to want to hold costs down to a minimum as well. There are no easy answers.
It's also expensive to cook for yourself if you are gluten free. Luckily, GF cooking and baking doesn't often require kneading, so a person can still make quick breads for themselves, saving some money in the long run. But as mobility decreases with age, a person relies more and more on store bought staples. Their pantry, which, until Celiac disease hit, was stocked with the usual chicken noodle soup, rice mixes with unsafe sauce ingredients, and pastries, will need an overhaul.
Thus, the financial burden on a newly diagnosed senior citizen with Celiac can be prohibitive. Local volunteer organizations are needed to help do a "kitchen restart” for seniors who are living independently and need to replace staples, plus thoroughly clean the dishwasher, and oven/microwave (among other tasks in a kitchen restart). In many places these volunteer organizations don't exist yet, and families must provide the needed support.
The gluten free diet is a medical diet, first, and a preference second. This is similar to the ketogenic diet. When that became popular, there were cries of "but it's a medical diet for epileptics." Yes, but it's also simply useful. While the same can be said for gluten free, economic considerations make the gluten free diet more challenging in situations where we depend on others. As a final thought, seniors without strong family support can seek out an Elderly Care Manager certified by a national professional's association.
1. Article naming two senior housing facilities that provide Gluten Free meals, and focuses more on gluten intolerance than Celiac: https://www.aplaceformom.com/blog/seniors-go-gluten-free/
2. National Restaurant Association Website's search for "gluten free" turns up several useful resources for both restaurants and cafeterias. These can be applied whenever someone cooks for a person who needs help with cooking: http://www.restaurant.org/Search.aspx?searchtext=gluten+free&searchmode=exactphrase
3. Magazine article specifically about unique challenges faced by newly diagnosed senior citizens with Celiac disease. https://www.glutenfreeliving.com/gluten-free/celiac-disease/celiac-disease-with-age/
4. Many statistics are from "Celiac Disease in the Elderly" free full text scientific journal article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3227015/
5. 23andme genetic disease testing: https://www.nbcnews.com/health/health-news/fda-approves-23andme-s-home-dna-tests-10-diseases-n743416
6. How Celiac triggers lactose intolerance, though, it may be temporary... https://www.beyondceliac.org/celiac-disease/related-conditions/lactose-intolerance/
7. Ditto for other FODMAPS: https://www.beyondceliac.org/celiac-disease-news/Celiac-Disease-in-the-News-article/1395/postid--16347/ Note: FODMAPs are an acronym for a group of troublesome carbohydrates that can cause IBS symptoms.
8. There are other Elderly Care Manager's associations also: https://www.longtermcarelink.net/a2bfindmanager.htm It pays to shop around.
9. Getting perspective on what it means to be a "senior citizen": https://grandmawilliams.com/2018/02/25/the-liability-of-labels-for-us-all/ and https://www.marksdailyapple.com/compression-of-morbidity/