Posts tagged ‘celiac disease disability’

June 11, 2019

Where Do You Draw the Line?

A recent restaurant meal leaves me wondering, where do you draw the line? A hectic day last week left me without time for lunch until mid-afternoon. Low blood sugar demanded I choose something nearby so I stopped into an Outback Steakhouse® because I know they have a gluten-free menu.
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I enjoy the bite of horseradish in Outback’s Caesar dressing. I settled on a gluten-free Caesar salad with grilled chicken. The food arrived quickly. I stared at it for a couple of seconds questioning whether I should eat the Parmesan, but hunger won out and I dug in. The first bite of salad tasted good. I was ready for another. On the second plunge, my fork pierced a hard crouton. CROUTON!?…in a gluten-free salad?

A crouton raises all sorts of questions. How did it get there? Was it dropped in the bowl when they prepared another salad nearby? Do they use the same bowl to toss regular and gluten-free salads? Did they make a regular Caesar and then pull off the croutons when my waiter noticed? Is this kitchen trained to avoid cross contact?

These questions hold the possibility that there could have been a significant amount of crouton residue throughout the salad. I ate the chicken that was arranged on top and left the salad uneaten. About the time I finished the chicken, a manager arrived with an apology and offer of a new salad or dessert.
CaesarSalad
I considered both, but I couldn’t accept. I was done. I had no trust left in that kitchen. After one more apology, they comped my meal. In this case, a free meal in exchange for a single crouton seems like a fair resolution, but there are larger questions that loom in the background.

A study published in 2018 in the American Journal of Clinical Nutrition concluded:
These surrogate biomarkers of gluten ingestion indicate that many individuals following a GFD regularly consume sufficient gluten (>200 mg/d of gluten) to trigger symptoms and perpetuate intestinal histologic damage.

It is possible that the patients studied were not strict in their adherence to a gluten-free diet, but it’s also possible that they ingested a damaging amount of gluten in spite of their best efforts to avoid it. My recent restaurant experience is a perfect example of how that can happen. My recent experience with Cheerios is another example.

The fact that studies seem to indicate accidental exposure is frequent begs the question whether a comped meal is a sufficient penalty to get the attention of a commercial kitchen regarding the serious health damage that can result to those with celiac disease from incidents of gluten exposure. I can’t think that it is but too much squawking about a specific incident could mean retaliation from an angry wait staff or chef.

Again, I’m left asking, where do you draw the line? It is important to my health to avoid gluten. It is important to my social life to occasionally eat in restaurants or attend events. It is important for me to feel like I can trust food labeled gluten-free.

It is important for all of us to be able to trust that we are getting accurate information. It is important for all of us to have food prepared in a safe manner. The more I think about this, the more I feel myself wanting to scream, “I want to be able to trust that you understand the importance to my health of providing me with carefully prepared and accurately labeled food without me having to emphasize my request in any way!”

Some are taking it a step further than screaming in their heads. One father sued Colonial Williamsburg over an incident in which its restaurant, Shields Tavern, did not allow his 11-year-old son with celiac disease to eat the homemade meal he brought with him on a 2017 school field trip because they do not allow outside food in the restaurant. Instead they offered to prepare him a gluten-free meal. The basis for the lawsuit was that the restaurant violated the ADA (Americans with Disabilities Act), the Rehabilitation Act and the Virginians with Disabilities Act.

The case was dismissed by a district court judge, but in a 2-1 ruling May 31st, 2019 the 4th District Court of Appeals reinstated the case. Writing for the majority, Judge Albert Diaz noted that Shields Tavern has rigorous protocols for preparing gluten-free meals that may suffice for most people with gluten intolerance, and a jury might decide those protocols sufficiently addressed J.D.’s disability.

But, he added, “The district court incorrectly overlooked the testimony that J.D. repeatedly became sick after eating purportedly gluten-free meals prepared by commercial kitchens. Until a jury resolves the disputes surrounding the nature and extent of J.D.’s disability, we cannot determine if the accommodation Shields Tavern offered, as good as it may be, fully accounted for his disability.”

We’ll have to wait to see how a jury views this case, but the publicity it is receiving just by being filed could be helpful to put commercial kitchens on notice that they can be held responsible if they do not accommodate dietary requests in a manner conducive to eliminating limits to the disabled of major physical activities or major bodily functions (see ADA definition of disability below).

On the other hand, I don’t know that a bevy of lawsuits over perceived insults that could result from a favorable jury decision is good. Protesting too much can yield the same result as saying nothing. But I think making an 11-year-old struggle to take care of himself because of a policy sounds like bad policy.

I applaud the boy for being willing to put his health above the stigma of being different from his classmates. If more of us showed such strong resolve, we’d all be healthier.

Perhaps reframing exposure to gluten for those with celiac disease and the gluten intolerant as a food safety issue would give it more credence amongst kitchen workers and waitstaff. The question then would be how to identify patrons for whom this is a safety issue as opposed to those who choose to eat gluten-free as a fad.

But should that really matter? As a matter of food safety, protocol should be followed for all patrons all of the time. If a customer requests gluten-free, then that’s exactly what they should receive–not maybe GF, almost GF, or what someone who doesn’t really know THINKS is GF. If gluten-free is not available, the customer should be informed upon ordering and outside food should be allowed. That would be the easiest way to avoid discrimination based on disability.

It would also be the easiest way for me to be able to relax through a meal instead of feeling braced for tomorrow’s tummy ache and next week’s rash. And while that would be welcome, it’s not reality right now. So, I choose to continue the traditions of pre-eating before events, carrying emergency food, and smilingly showing my waiter an errant crouton rather than delivering loud reprimands, throwing fits, or filing lawsuits. All of my screaming remains in my head.

Not everyone draws the line where I do, nor should they. Navigating the social intricacies of living gluten-free has many nuances. I don’t view celiac disease as a disability, but maybe it’s good to have a path of recourse when dealing with entities that choose to restrict requests rather than accommodate. I can see both sides. And my approach may change.

One more round of severe itching from dermatitis herpetiformis and my screaming may be out loud. If that happens, it will be because the itching has worn me down and gotten the best of me. And that may be where some people already find themselves. Celiac is a disease that comes with inherent frustrations and physical misery and it’s disheartening when you do everything right and still end up with damaging levels of gluten in your system.

The best way I know to minimize inadvertent gluten ingestion is to cook from scratch using fresh ingredients. When that’s not possible, patronize brands and places with which you feel comfortable. When you experience the occasional problem, draw the line where it feels right for you.

https://academic.oup.com/ajcn/article/107/2/201/4911450

https://www.richmond.com/news/virginia/court-reinstates-suit-about-boy-bringing-gluten-free-meal-into/article_aa022bd8-33f2-5db8-8e32-80f1e32f1926.html

https://www.ada.gov/q&a_lesley_university.htm

https://www.ada.gov/pubs/adastatute08.htm#12102

http://www.cooking2thrive.com/blog/im-saying-cheerio-to-cheerios/

http://www.cooking2thrive.com/blog/gluten-free-living-gotten-easier/


The Americans with Disabilities Act (ADA) defines disabilities as follows:

Sec. 12102. Definition of disability

As used in this chapter:

(1) Disability
The term “disability” means, with respect to an individual
(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment (as described in paragraph (3)).

(2) Major Life Activities

(A) In general
For purposes of paragraph (1), major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.
(B) Major bodily functions
For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.
(3) Regarded as having such an impairment
For purposes of paragraph (1)(C):
(A) An individual meets the requirement of “being regarded as having such an impairment” if the individual establishes that he or she has been subjected to an action prohibited under this chapter because of an actual or perceived physical or mental impairment whether or not the impairment limits or is perceived to limit a major life activity.
(B) Paragraph (1)(C) shall not apply to impairments that are transitory and minor. A transitory impairment is an impairment with an actual or expected duration of 6 months or less.
(4) Rules of construction regarding the definition of disability
The definition of “disability” in paragraph (1) shall be construed in accordance with the following:
(A) The definition of disability in this chapter shall be construed in favor of broad coverage of individuals under this chapter, to the maximum extent permitted by the terms of this chapter.
(B) The term “substantially limits” shall be interpreted consistently with the findings and purposes of the ADA Amendments Act of 2008.
(C) An impairment that substantially limits one major life activity need not limit other major life activities in order to be considered a disability.
(D) An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.
(E)
(i) The determination of whether an impairment substantially limits a major life activity shall be made without regard to the ameliorative effects of mitigating measures such as
(I) medication, medical supplies, equipment, or appliances, low-vision devices (which do not include ordinary eyeglasses or contact lenses), prosthetics including limbs and devices, hearing aids and cochlear implants or other implantable hearing devices, mobility devices, or oxygen therapy equipment and supplies;
(II) use of assistive technology;
(III) reasonable accommodations or auxiliary aids or services; or
(IV) learned behavioral or adaptive neurological modifications.
(ii) The ameliorative effects of the mitigating measures of ordinary eyeglasses or contact lenses shall be considered in determining whether an impairment substantially limits a major life activity.
(iii) As used in this subparagraph
(I) the term “ordinary eyeglasses or contact lenses” means lenses that are intended to fully correct visual acuity or eliminate refractive error; and
(II) the term “low-vision devices” means devices that magnify, enhance, or otherwise augment a visual image….

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”