the patient celiac

Quietly Spreading Celiac Awareness

18 comments August 22, 2014

Summer is wrapping up and right now I am preparing to send my 3 oldest kids, plus a teenage niece, back to school. Due to some pretty significant life changes I have had to put blogging on the back burner for a while. It's been difficult to do this, as I feel very passionate about spreading Celiac awareness and writing about gluten-related issues. But as I reflect on my summer, I realize that I have had opportunities spread celiac disease awareness, and share information about celiac disease, all summer long. I'll share a few examples with you, and as you read, I am sure you'll find that many of you have had similar experiences.

Back in June while we were in Boston we went out to dinner with a group of friends at an Asian restaurant.  I was already one day post-glutening, so I went out with no intentions of eating anything, but I was curious to see if the restaurant had any gluten-free menu options.  I first spoke to the hostess who was excitedly able to hand me a copy of their brand new gluten-free menu. I was actually the first customer who it was given to as it was hot off the press.  As I read through the GF menu I became very confused, as I found that many Asian dishes that are usually gluten-free, like pad thai, were not listed on the GF menu (pad thai was on the regular menu), but many Asian dishes that are almost never gluten-free were on their new GF menu.  I was particularly bothered by Udon noodles being on the GF menu, as they are almost always made with wheat flour.  I approached the manager and specifically asked him what type of flour the Udon noodles were made of and he quickly replied that they were made in the restaurant out of rice flour only.  I was surprised but excited by the possibility of being able to actually eat Udon noodles during a future visit. A few minutes later the manager came over to our table, and said that he was wrong, that the Udon noodles on the GF menu were made of mostly rice flour, but that a little wheat flour was added in as well.  We were able to have a nice discussion about how sick I, or anyone else with celiac disease, would have become after eating off of his restaurant's gluten-free menu. He proceeded to throw all of the gluten-free menus away and promised that his establishment would be much more careful if/when they ever reintroduce a gluten-free menu. Through this experience I was able to spread celiac disease awareness.

I recently went on a job interview, which I knew ahead of time was going to include a lunch, and was told that I didn't need to worry because the local Au Bon Pain (chain that sells breads, soups, and pastries) had some gluten free options available. I explained that since I have to eat gluten free for medical reasons, that the risk for gluten cross-contamination at Au Bon Pain was too high for me, and that I would not be able to eat there (one of my worst glutening episodes ever was eating GF soup from an Au Bon Pain that was either cross-contaminated and/or mislabeled).  I was able to negotiate having the lunch in a much safer environment, where I was able to eat without getting sick, and was ultimately offered the job. I increased awareness by advocating for my own health.

Just this week I ran into a co-worker who was recently diagnosed with celiac disease, and I asked how she was doing.  When she replied, "Fine," I could tell in her eyes that she is really not doing that well, so I specifically asked how the gluten-free diet is going.  She broke down and confided to me that she hates having to eat GF, and that she "cheats" all the time, and then feels sick and gets neurologic and psychiatric symptoms and hates her life even more.  I was able to listen emphatically,  but then we discussed how important it is for her to stay strong and not cheat, so that she does not continue to damage her body and mind.  I tried my best to increase awareness.

I have received emails from many of you with questions and numerous messages from people with celiac disease and non-celiac gluten sensitivity who are confused, feel alone, need to vent, etc. I try my best to reply to each and every message that pops up in my in box.  By doing this I try to provide support and help to increase awareness.

If life ever calms down a bit I hope to be able to return to writing and posting articles on here, and discussing the latest celiac research like I have in the past, but if it doesn't, please know that I am here for all of you and that you can reach me via email or Facebook at any time. Although I am never going to be able to dedicate full time efforts to this page, I hope to be able to continue on with it in some capacity. Thank you for your patience and time.


In reply to IrishHeart.
Hi G,
I would LOVE for you to guest post. You can write about anything that you’d like. I will be in touch by email soon.
7/26/2016 2:44:01 PM
Irish Heart
In reply to Jess.
If you need any more guest posters to lend a hand while you are busy….I would be delighted to help out.
7/26/2016 2:43:43 PM
In reply to IrishHeart.
Thank you, G, for the support and love. I cannot wait to start writing again, and luckily, have a few guest posters lined up to help fill in the gaps. I should be down your way this winter for sure, I’ll let you know!
7/26/2016 2:43:03 PM
Irish Heart
Dearest Jess,

You are always a devoted celiac advocate and you should never apologize for not writing “more or sooner.” Your readership will always be here.

You lead a very full life, hon. You have a family and a demanding and emotional job.

I know how hard you work. I am supportive of all your efforts and I always appreciate any and all articles you write or share. I am delighted for you that you got the job in my hometown ! whoohoo! :)

Just take it easy now….and enjoy the Fall and prepare for your marathon. Go Jess, go!

Please let me know if you come south anytime soon!

Much love and respect,
7/26/2016 2:42:15 PM
In reply to Jess.
I appreciate the not safe disclaimer too…then again I never feel safe anywhere, anyhow, unless it is a dedicated facility.
7/26/2016 2:41:53 PM
In reply to Erica.
Hi Erica,
Thank you so much. Marathon training is actually going really well, my long runs are up to 14 mi and so far no knee pain.
I really hope to be writing and posting again come October. There may be one or 2 Celiaction study posts in Sept. and then not much, but I am still here is you ever need to contact me. I really appreciate all of your support of my page!
7/26/2016 2:41:35 PM
In reply to Paula @CeliacCorner.
Hi Paula,
Yes, we’ll be moving to Boston next June. I’ll be working in a smaller NICU that is associated with one of the large academic centers. It would be great to be able to meet in person someday, and I’ll let you know when we finally make the big move!
Thanks also for your generous donation for my marathon fundraiser and for helping to get the word out. I’ll get onto Crowdrise and send you a proper thank you soon!
7/26/2016 2:41:19 PM
In reply to Vik.
Hi Vik,
I love when you are gabby, so no worries. And so nice to know that you will always have GF treats stocked for after your nature walks. I’ve been noticing more and more that bakeries and other eateries are selling GF baked goods, but are using a disclaimer that they are not safe for celiacs. I actually appreciate that they do this, and are upfront about possible cross-contamination risks.
I hope you have a nice weekend and thanks, as always, for taking the time to read and comment.
7/26/2016 2:40:53 PM
Awww, Jess! I’ll miss your posts! I hope your training is going well…I am behind on a few posts so I’m not sure where you are in that. Very time intensive. I feel like I have been training for a marathon just getting my kids back to school….minus the health benefits. I will miss your educational and informative posts that put all of the studies into relatable language. Thanks for all you do and I still look forward to your posts no matter how frequent.
7/26/2016 2:40:32 PM
Paula @CeliacCorner
Dr. Jess, we all feel your passion for helping others with CD & NCGS and you have helped so many since publishing The Patient Celiac. We understand personal lives must come first …. and even if you are able to contribute in a very limited way for now, your archived posts are still an invaluable resource for those visiting your blog. Of course, we also hope you’ll consider blogging again, once things settle down! Enjoy the rest of your summer and congrats on your new position … does this mean relocating to Boston? Paula
7/26/2016 2:40:10 PM
In reply to Vik.
OOPS. Somehow my last gabby comment posted before I could also say, we really appreciate all of your advocacy, and are always glad to hear from you!
7/26/2016 2:39:42 PM
Hi Jess– great job on the advocacy! And standing up for yourself at the interview. Some of your experiences are similar to mine. I went to a Farmer’s Market and this woman was selling baked goods marked GF. I am very leery of such booths, and I started asking her -I was really nice, I swear!-if she used a dedicated facility, if she used GF sources for her ingredients, if all of her equipment was specifically for GF items, and told her why this is all crucial to celiacs. She got more and more flustered with each question and finally, she shakily said I had given her a lot to think about.
Then about you talking to your fellow celiac. I have a coworker, in her 20’s, who probably has it. Her mom has it and my coworker has all the same symptoms. But she refuses to get tested because she doesn’t want to know! I Another instance-I lead a monthly nature walk, and at the end the guests get beverages and muffins, which they greatly enjoy. Of course I do not partake, being celiac and vegan to boot. Most of the people are regulars and I’ve known them for years. This year I went to a GF festival in town, to look at the booths and to volunteer at our local celiac chapter booth. The second I walked into the exhibit hall, I ran into one of my regular walker couples. We were all: what are YOU doing here ?!? We had no idea of each other’s celiac status and he was a recent diagnosee–I’d never noticed him not eating the muffins since there is usually so much else going on. The next time we did the walk, I brought him some Lucy’s cookies from a stash I had. These are my favorite GF cookies because they are certified GF, dedicated GF facility, free of many allergens, plus vegan, plus you can buy them in a box of packets with 3 flavors and 3 cookies each. Plus they are my favorites taste-wise. He was very touched as we all are when someone makes an accommodation for us and we can feel safe. Then, I went to the coordinator of the program and told her all this, and suggested that we always have a box of these around for people with gluten issues, or vegetarians. She said yes, so we can accommodate the people in this program plus other ones that she coordinates. It’s way more expensive than buying a generic box of muffins, but the little packets are an easy accommodation and have a good shelf life, too. Now, I have to good self control and stay out of the dang cookies, the choc chip ones are KILLER.
Whew that was a long story!
7/26/2016 2:39:24 PM
In reply to M christine acchiome.
Hi M,
Thank you so much. I truly believe that awareness is rooted in our day to day interactions with others.
I hope to be back to writing and posting on a regular basis this fall.
7/26/2016 2:38:49 PM
In reply to phyllis mueller.
Hi Phyllis,
You are welcome. Many thanks to you for all of the support of my page. It means so much to me to have “regular” readers like you!
7/26/2016 2:38:25 PM
In reply to shannon.
Hi Shannon,
Thank you so much for your kindness. I hope that things calm down a bit this fall too.
I will be in touch soon. Thank you for all that you do to spread awareness too!
7/26/2016 2:38:04 PM
M christine acchiome
I will miss your posts and look forward to when you can do so again in the future.
This post is so important and informative as to how we can all spread awareness in so many ways. It is a good reminder to me as to what I can do to pass it on.
Thank you.
7/26/2016 2:37:41 PM
phyllis mueller
God Bless you and your family!! Thank you for all you do!
7/26/2016 2:37:21 PM
Thanks for doing what you do…… each of us needs to take responsibility and do what we can – you are a voice for those who cannot. Hope things calm down for you soon.
7/26/2016 2:36:44 PM
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