the patient celiac

Moving Time

20 comments June 11, 2015

My kids had their last day of school in WI yesterday and we are in the midst of getting ready to move to Boston next week. I have had limited time to dedicate to this page as I have prepared for my family's transition, but I plan to be back to posting once we are settled in. We have a lot of family in Boston (my husband grew up in a suburb of Boston), I did my pediatric residency training at UMass, and I will be working in two NICUs that are a part of the Boston Children's Hospital system starting in July. I am optimistic that the stress of the move will be well worth it in the end…it just needs to snow a tad less than it did last winter!

This is going to be our first move since I was diagnosed with celiac disease in 2010, so it's required  a little extra planning in terms of what to eat and where to stop to eat along the road. Although I am much more relaxed about this compared to how I would have reacted to moving shortly after I was diagnosed five years ago.

I plan to keep the following GF snacks on hand for our long (1300 mile) road trip to MA: bananas, fresh fruit, string cheese, cut up vegetables, almonds, popcorn, Lara Bars, and Clif Trail Mix bars. In the past I have also brought Zing bars and GF oatmeal packets on trips. I hoard bananas and apples at the free breakfasts at hotels as well.

We plan to dine at P.F. Chang's, Outback Steakhouse, and/or California Pizza Kitchen as we travel, becasue these three chains all have GF menus that I actually trust (and I have never gotten sick from any of their locations). I have also had good luck ordering bacon-cheese potatoes from Wendy's and burrito-type bowls from non-busy Chipotle's and Qdoba's. I'm scared to eat anywhere else, fast food-wise, because I worry a lot about cross-contamination. It's been almost a year since my last major "glutening," which, ironically, happened in Boston, and I do not want to break my 12 month stretch during our road trip and move.

I will be back soon to update all of you on our move. I am also eager to get back to posting, as I have came across some interesting research that I am itching to share. In the meantime I hope that you all have a wonderful summer.  Please get in touch via email (thepatientceliac@gmail.com) if you have questions, come across any interesting research that you'd like to share and/or if are interested in guest blogging on my page. Also, please let me know if you live near Boston and would like to meet up. I desperately need GF restaurant recommendations as well. Thank you in advance.

Thanks also to Gillian at the Celiac Disease Foundation for sending the Team Gluten-Free t-shirts for my kids. My oldest 3 were excited to wear them to school after they arrived and all 4 were as cooperative as they could be while my husband took the photo that I used for this post :) I think he only had to take about 100 shots to get one where everyone's eyes were open and there was not excess silliness or grumpiness.

 

 

Comments
Jess
In reply to M.
M,

After hearing that you get asthma symptoms, It makes total sense why you wouldn’t want a gluten challenge–

But, I’ve heard Dr. Guandalini from the Celiac Center at the Univ of Chicago speak many times and he’s said that if a patient has a biopsy confirmed diagnosis of dermatitis herpetiformis, the rash associated with celiac disease, that no further testing is needed for a celiac diagnosis. A dermatologist would have to do the skin biopsy.

Jess
7/19/2016 6:44:07 PM
Laura
In reply to Jess.
Oh how fun! Luckily we now have a Whole Foods which has some great options but besides that I’d recommend New World Bistro Bar, City Line Bar and Grill, Mingle, and of course we have Chipotle and Bonefish which have good gluten free options.
7/19/2016 6:43:39 PM
Vik
Hi Jess, I love your group photo! Have been thinking about you and hoping all went great with the move.
7/19/2016 6:43:08 PM
M
To clarify…gluten is an asthma trigger *for me* specifically. Not just in general.
7/19/2016 6:42:43 PM
M
In reply to Jess.
I don’t know. Gluten is a significant asthma trigger and my asthma can be serious so… My main concern is my kiddo…does she have it?

I was wondering why can’t they biopsy the rash (for those that have it) and make a Celiac’s diagnosis off that? I can get a good rash going in about a week vs. the long, drawn out gluten challenge.
7/19/2016 6:41:29 PM
Jess
In reply to M.
Hi M,
Thanks for the well wishes and thanks for stopping by my page.
Out of curiosity, are you going to do a gluten challenge for diagnosis, or are you going to stay GF for life?
Jess
7/19/2016 6:39:33 PM
Jess
In reply to Gail Littell.
HI Gail,
Thank you so much for stopping by and providing information for all of us about SIBO.

My lingering IBS symptoms resolved after I was diagnosed and started on treatment for mast cell activation syndrome in 2013, but I know that for many celiacs that SIBO can be a culprit.

If you have any interest in ever writing a guest post about SIBO I would be more than happy to share as well.

Jess
7/19/2016 6:37:03 PM
Jess
In reply to Laura.
Hi Laura,
This is the first that I have heard of this cafe–now I just have to figure out where Millis is! Thank you.
Also, do you attend the NECO meetings? I am hoping to go in Sept.
Jess
7/19/2016 6:36:40 PM
Jess
In reply to Kaila (GF Life 24/7).
HI Kaila,,
It’s so nice to “meet” you. We have been thrilled to have so many options for dining. I would love your list, whenever you have the time. My blog email is thepatientceliac@gmail.com.
Also, I checked out your blog and it’s beautifully done. I started to follow you. Thank you for contributing to our community :)
Jess
7/19/2016 6:32:12 PM
Jess
In reply to Laura.
Hi Laura,
Thank you so much.
We will actually be driving through Albany every 6 months or so as we drive to visit my family in OH, so any restaurant suggestions would be great. I had no idea where to eat there when we drove through in June.
Thanks so much!
Jess
7/19/2016 6:26:04 PM
Jess
In reply to Laura.
Hi Laura,
Thank you so much.
We will actually be driving through Albany every 6 months or so as we drive to visit my family in OH, so any restaurant suggestions would be great. I had no idea where to eat there when we drove through in June.
Thanks so much!
Jess
7/19/2016 6:26:03 PM
Jess
In reply to MJ.
Thank you so much MJ. We are finally feeling sort-of settled into life in the Boston area.
I’ve been to Legal Sea Foods and also the Legal C bar in Lynnfield. Haven’t checkout out Burton’s yet, but you’re the 5th or 6th person to recommend it.
Hope our paths cross at some point!
Jess
7/19/2016 6:25:41 PM
Jess
In reply to Irish Heart.
Hi Irish Heart,

I am finally catching up with my blog :)

Thank you for all of your suggestions! We did go to Woodman’s last month and I loved it!!! Had the fried clams and they were heavenly. We are went to the Chatham Fish Co when we were on the Cape and they also had fabulous GF seafood.

Looking forward to seeing you this fall!

Jess
7/19/2016 6:22:13 PM
M
Boston is a really cool area. One of my favorite places to visit. I hope you enjoy your new hometown!

I found you because Celiac’s is coming up as a possibility for me, but I’m already gluten free which makes testing hard. Ha.

Anyway, I look forward to learning from your blog.
7/19/2016 6:16:18 PM
Gail Littell
I hope you are getting settled in your new home. I am a licensed naturopathic doctor. I wanted to leave a comment regarding your apparent continuing struggle with IBS. Have you considered that SIBO (small intestine bacterial overgrowth) may be involved? I quote from the excellent website created and maintained by Dr. Allison Siebecker, ND,
http://www.siboinfo.com/associated-diseases.html :

“Celiac Disease
Celiac disease is thought to be caused by an auto-immune response to gluten, but before the discovery of gluten in 1952, Dr Sidney V Haas proposed the theory of SIBO as the cause in his book The Management of Celiac Disease. He was influenced by the complete cure of celiac children he treated with his Specific Carbohydrate Diet (SCD) which goes beyond gluten-free to a grain-free diet. Elaine Gottschall discussed her support of Dr Haas’s theory and her disagreement with the belief that gluten is the culprit in a chapter of her book, Breaking the Vicious Cycle. Read her article Whatever Happened to the Cure for Celiac Disease. Fascinating new information has been discovered relating to gluten and celiac disease in recent years, particularly the role of zonulin, discovered by Dr Fasano and team. How all of this fits together is not clear.

What is clear is that many Celiacs also have SIBO. Studies show this is prevalent in those who still have persistent or partial symptoms after gluten avoidance. Since bacteria eat the starch contained in all grains, SIBO offers an explanation why avoiding all grains, not just gluten grains, helps these patients. SIBO has also been suggested as an alternative explanation for latent celiac, where gliadin antibodies are elevated but little to no change is observed in the small intestine.”

I personally have seen the SCD diet work wonders in children. For both lay persons as well as medical professionals, the above website is a gold mine of accurate and cutting edge information. Dr. Siebecker is associated with the SIBO Center located at NCNM in Portland, Oregon.

I have just discovered your website and I want to thank you for the time and effort you have clearly invested. I am bookmarking! I

Again, I wish you very well as you settle into your new home in Boston.

Gail
7/19/2016 6:14:22 PM
Laura
Welcome to Boston! Try Twist Bakery and Cafe in Millis. 100% gluten free cafe. You will love it!
7/19/2016 6:13:02 PM
Jennifer Miles
Good luck with the move! I must admit that I don’t eat out too much like MJ. I’ve eaten at the Legal Seafoods in Natick and Park Plaza. We had a great experience at both. I have heard a mixed review about another spot, but in general, it’s a great chain and I haven’t had a problem yet. Then we have PF Changs, Joes, and Burtons too for chain restaurants. There are a few dedicated bakeries, but I can’t eat at them due to other food allergies. Safe travels!

P.S: If you’re interested, I can email you more about restaurants. (I didn’t want to write a really long comment, but we’ve tried out a bunch in the Boston area that aren’t chains too.)
7/19/2016 6:12:25 PM
Laura
Good luck on the move! There are so many awesome places in Boston to eat gluten free. I live in Albany and go out to visit friends out there often :) If you stop in Albany, NY there are plenty of gluten free restaurants as well!
7/19/2016 6:11:51 PM
MJ
Welcome to Boston! And congratulations on finding a place to live in this crazy real estate market! I’m in the suburb of Lexington. I never really eat out so I can’t offer too many restaurant suggestions, but Legal Seafoods and Burton’s are both great options. We also have lots of wonderful farmers markets in the areas, especially now in the summer.
7/19/2016 6:11:23 PM
Irish Heart
I am so excited for you as you embark on your new adventure. When I visit my mom later this year, you can be sure we will hook up for dinner! I can tell you this: Burton’s is a safe bet. Also, Tryst and Not Your Average Joe’s in Arlington are safe places. Legal sea foods is good. Five guys. So is Woodman’s in Essex (awesome fried clams and seafood) and I will have Lisa (Gemini from c.com) be in touch with you as she lives there and has dined in a few safe places in the North End. Also, don’t forget to consult Find Me Gluten Free. You’re going to be fine over there…Also, when you are settled, a day trip to western Mass, to eat at http://www.kringlefarmtable.com/#about is well worth it! There are so many more places to eat in the Boston area and all of Massachusetts than down here, that’s for sure! Good luck, honey…and we’ll talk soon! xoxo G
7/19/2016 6:11:02 PM
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