Celiac Disease


Lesley University in Massachusetts was investigated by the Department of Justice for failing to abide with the Americans with Disabilities Act by providing reasonable accommodations in providing meals to students who had celiac disease and food allergies. Recently, the University settled the investigation by paying $50,000 to the students who filed the complaint in addition to making multiple concessions for accommodating students who have celiac disease in the future.
The summary of the agreement can be found here.
The text of the full settlement agreement can be found here.

The concessions in the agreement include requirements that Lesley University
– Continually provide ready-made hot and cold gluten- and allergen-free food options in its dining hall food lines;
– Develop individualized meal plans for students with food allergies, and allow those students to pre-order allergen free meals, that can be made available at the university’s dining halls in Cambridge and Boston;
– Provide a dedicated space in its main dining hall to store and prepare gluten-free and allergen-free foods and to avoid cross-contamination;
– Enable students to request food made without allergens, and ensure that a supply of allergen-free food is available;
– Work to retain vendors that accept students’ prepaid meal cards that offer food without allergens;
– Display notices concerning food allergies and identify foods containing specific allergens;
– Train food service and University staff about food allergy related issues; and
– Because the issues surrounding food allergies are “not static,” the University agrees to continue evaluating and revising the policies to remain in compliance with the Americans with Disabilities Act.

There are additional articles that comment on the settlement, such as those at National Public Radio and at Fox News. Some people believe that the settlement is overreaching because of the detail required. The agreement describes where on campus that food must be prepared and how the University must attempt to avoid cross-contamination of foods – including mandating separate counter areas, kitchen supplies, refrigerators, cabinet space, appliances, and food warmers for food prepared for food-allergic students. The students with food allergies also have a separate locked room in which they can dine to prevent cross-contamination from food served to other students.

There are several problems that the settlement doesn’t address.
How is the school supposed to control for contamination from one type of non-allergenic food to another? For example, how would the school prevent peanut butter on a gluten-free PB&J sandwich from coming into contact with the food on a peanut-allergic student’s tray in the same dedicated cabinet space or the same restricted dining room? Having separate appliances, supplies, cabinets, preparation areas, etc for each type of allergy certainly wouldn’t be “reasonable” under the ADA since the dozens of different food allergies and literally thousands of different food allergy combinations would require multiple separate facilities to truly prevent any cross-contamination.
Exempting the students from the meal plan may also not be a viable solution for this problem since many students have limited options for getting off campus to purchase allergen-free foods and have no place to store the foods even if they did.

The takehome point from this settlement for schools that receive federal funding is that they should take 504 discussions with students seriously. There was no description of what events led up to the complaint and federal investigation, but comments to the articles hinted that the university may have been dismissive of the students’ requests for accommodation. If this was the case, the University would have fared much better had it worked with the students to come up with a mutually acceptable solution to the students’ problems rather than enduring a federal investigation and settlement.

By entering into this settlement, the Department of Justice has now set what it considers to be the minimum standards for schools to meet the needs of students with celiac disease and food allergies. This settlement agreement will likely now be used as a guideline that other schools will need to follow in order to comply with the Americans with Disabilities Act when dealing with students who have celiac disease or food allergies.

I realize it has been quite a while since my last post. However, this was some info that I really thought needed sharing. A patient of mine is having some difficulty sleeping. The counselor he is seeing recommended taking melatonin as a sleep aid, but asked that he clear it with his physician first as the patient has celiac disease. Truly, I thought that as long as the product was gluten-free, there should be no problem. However, being who I am, I decided to research the product just a bit. What I found  was news to me.
Melatonin , albeit natural, is a potent immunostimulator. In other words, it awakens the immune system causing it to become somewhat hyperactive. In doing so, melatonin increases Interleukin-1 and Interleukin-2, both strong inflammatory markers, thereby increasing the number of T-cells in the system. Together, these reactions stimulate the immune response and worsen already existing autoimmune diseases. In fact, the article that I read stated that Melatonin is absolutely contraindicated in conditions such as Rheumatoid Arthritis and Lupus.
Now, the question still remains “How about Celiac Diseae?” In those of us with celiac disease, while on a strict gluten-free diet, we manifest no inflammatory response as we have removed the offending agent from the equation. So, theoretically, it should be safe to take melatonin. However, there is no research specific to melatonin and celiac disease, so I cannot recommend the use of this product presently.
As an aside, I also researched L-tryptophan as alternative sleep aid. According to the research I did, L-trytophan causes an autoimmune condition called eosinophillic myalgia syndrome, which can be severe if not treated in time. If one already has an underlying autoimmune condition, it is safe to say that we do not want to introduce a risk factor for developing another one.
If you would like to research these products on your own, you can go to http://en.wikipedia.org/wiki/Melatonin.

Had another wonderful talk with Steve King and Johnnie Putman of WGN Radio Chicago. For those of you who are new to this blog, Steve and Johnnie are night time radio personalities. Steve has long standing celiac disease and both live a gluten-free lifestyle. They are very supportive of my cause, that being to reach as many people living with celiac disease as I can. In advance of mine and Bill’s upcoming lecture, Steve and Johnnie were kind enough to chat with me by phone and allow me to shamelessly plug the lecture. I will not bore you with the details of the lecture as they were spelled out in the previous post. However, should you be interested in hearing the interview, you may do so via the WGN radio website. http://www.wgnradio.com/shows/stevejohnnie/wgnam-sj-celiac-lecture-may-15-2011,0,1155568.mp3file.

I so enjoy speaking with Steve and Johnnie. If you happen to be up at the midnight hour, tune in and take a listen. I guarantee you will enjoy the show!

May is Celiac Awareness Month. What better time for some FREE informational lectures on celiac-related topics?

We have some old topics that we have updated and some new topics that have never been discussed. On the agenda are the following lectures:

1) Anatomy of Celiac Disease
2) You Might Be A Celiac If …
3) Gluten Intolerance vs Celiac Disease vs Gluten Allergy
4) Myths About Celiac Disease
5) Gluten Free & Symptomatic
6) Type 1 Diabetes and Celiac Disease
7) Medicolegal Aspects Celiac Disease

The lecture series will take place next Sunday May 15, 2011.

Registration starts at 12:30 PM
Lectures go from 1PM to around 4:30PM
We will leave plenty of time at the end for questions
After questions are finished, the CSA-GC will have a short meeting for members.

In addition to the lectures, there will be several vendors of gluten-free products present with product samples, so not only will you learn about celiac disease, but you will also get some great gluten-free food.

In order to get an idea of the number of attendees, the Celiac Sprue Association of Greater Chicagoland is asking that attendees preregister. Doing so is quick and painless. There are three ways to register:
1. Go to the CSA-GC’s Facebook page and click on the link for our lecture, then click on the “will be attending” link.
2. Send an e-mail to CSACGNewsletter@yahoo.com and let them know if you’ll be attending
3. Respond directly to the CSA-GC president Tony Deany at 630-640-0128

The lectures will be held at:
Pipefitters Training Center
Local Union 597
10850 W 187th Street
Mokena, IL 60448

You can find a map to the Training Center here. If you type in your address on the page, you can get door-to-door directions. The easiest way to get to the center is to exit Interstate 80 at LaGrange Road South, turn right (West) at the first light (191st Street), follow 191st Street about 2 miles until it ends at Wolf Road, turn right (North) on Wolf Road, then turn right (East) on 187th Street.
When you are driving down Interstate 80, the Training Center is the large complex on the South side of Interstate 80 at Wolf Road.

We also want to express our sincere gratidute to the Chicago Pipefitters Local Union 597. They are allowing us to use their Training Center free of charge on Sunday as a service to the public. Please keep them in mind if you have a piping job or if you are interested in becoming a pipefitter!

This is a post from Bill – Dr. Michelle’s husband – about my recent hospitalization at University of Chicago.

After a bad experience during my last hospitalization a couple of years ago, I was prepared to blast the University of Chicago for the lack of gluten free choices on its menu during my most recent hospitalization a couple of weeks ago.

A couple of years ago, we had to send meals back on several occasions because the “gluten free” meals weren’t always “gluten free.” Some meals I was stuck with a boiled piece of chicken and some lettuce. After a couple of days, I just gave up and had Michelle and other family members bring me food to eat.

Fast forward to 2011. Wow.

Make a phone call to the dietary service and now you can pick from a list of dozens of gluten-free meals.

For breakfast, you can have pancakes, waffles, french toast, granola, omelets or many other gluten free entrees.
Lunch and dinner entrees include gluten free mac and cheese, chicken tenders, pizza, deli sandwiches, stir fry, roast pork, and stuffed shells.
There is even gluten free apple cobbler, lemon bars, and chocolate chip cheesecake for dessert.

I was so impressed that I copied one of their menus. It is in .pdf format at this link.

What does the food taste like? I had waffles and an omelet for breakfast the day that I left (before that I was on a liquid diet). You could tell the waffles were from a box, but they were still tasty. The cheese omelet was fluffy and quite good.

Commendations to the University of Chicago for bringing their inpatient gluten-free menu up to the high standards of their celiac disease program.

Now if I could only get them to deliver to our home …

Simply a save-the-date note for the University of Chicago’s Celiac Disease Center annual spring benefit, Spring Flours.

This year it will be held on Friday, May 6th at the Swissotel downtown Chicago. Every year, this event turns out to be more spectacular than the year before. The proceeds benefit very important research being done at U of Chicago on celiac disease.
For more information, go to www.celiacdisease.net. I hope to see all of you there!

Huge news out of University of Chicago’s Celiac Disease Center. Dr. Bana Jabri  has been able to isolate an inflammatory compound, Interleukin-15, as a main area of research in the treatment and possible prevention of celiac disease. Through a mouse model of celiac disease, developed at the University of Chicago,  it was found that elevated levels of interleukin-15 caused signs and symptoms synonymous with early onset celiac disease. It was further found that when the pathway to this compound was blocked, there was regression in the disease. Moreover, it was discovered that all of the mice with celiac disease-type symptoms had an elevated level of interleukin-15.

Further study will, of course, ensue. Many more answers will follow. But, for the moment, we will revel in the fact that advancements are on the horizon. I hope my children’s’ children will not need to know what a gluten-free diet is. For the present, however, I would like to congratulate and thank the researchers at University of Chicago for their tireless efforts in finding a cure for this disease!

To read more about this study, follow the link below.

http://news.yahoo.com/s/nm/20110209/hl_nm/us_celiac_treatments

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