the patient celiac


4 comments October 30, 2015

I love reading and responding to your comments, emails, and Facebook messages. Lately it seems that many of the same questions have popped up again and again. Below are the answers to some questions I've been asked on more than one occasion.

What are some good online resources for information about celiac disease? I use to find abstracts for recently published papers about celiac disease and non-celiac gluten sensitivity. Some of my other favorite sites include the webpage and Facebook pages for the University of Chicago Celiac Disease Center, the National Foundation for Celiac Awareness, Celiac Corner, the Celiac Disease Foundation, Gluten Free Watchdog (requires a monthly subscription, but is well worth it), and Amy Burkhart, MD, RD's page. Dr. Burkhart attended the International Celiac Disease Symposium (ICDS) that was held in Prague in this past June, and she has excellent posts summarizing some of the research that was presented at the ICDS in her Sept. and Oct. blog posts. I am also a huge fan of Gluten-Free Living magazine and was honored to be featured in this post from their website last year.

How often do you screen your children for celiac disease? I am having my kids screened with a celiac panel (which includes a TTG-IgA and DGP-IgG) every two years, and obviously sooner if they develop any concerning symptoms. I had my oldest 3 kids first screened around their 4th birthdays. However, when I did my celiac preceptorship at the University of Chicago last December,  Dr. Guandalini suggested that "at-risk" children be screened for the first time at age 3 and then every 2-3 years in the absence of symptoms.

How have you been able to convince your family members to get screened for celiac disease? I haven't :( As of right now, I am pretty sure that only two of my cousins and one of my nieces have been screened, and I am from a rather large family. It is much easier for me to convince strangers to be tested.

Do you still have symptoms from your celiac-induced neuropathy? I fortunately do not have neurologic symptoms at the present time. I first developed neuropathic symptoms after a severe "glutening" episode in the fall of 2012.  Since that time my nerve symptoms (tingling and numbness in my legs and feet) have only recurred about a handful of times, and each episode has been shortly after I've had accidental exposure to gluten.

Do you drink gluten-removed beer like Omission? No, I do not. I had Estrella Damm a few times early in my celiac journey, but since then, just to be safe, I have transitioned to GF beers made with non-gluten grains like sorghum. My favorite right now is Dogfish Brewery's Tweason'ale.

What do you do when you get "glutened?" I usually curse a few times and then try to move on :) Seriously though, I use a heating pad to deal with the abdominal pain, drink a lot of fluids and try to stay as close to a bathroom as possible.  I have had to work and interview post-glutenings, and while it has not been fun, I have not had alternative options.  I explain to people that it's a lot like having a bad case of the "stomach flu" followed by about 2-3 weeks of autoimmune symptoms like fatigue and joint pains. Fortunately, with time, this has happened less and less, but I made a lot of mistakes the first two years after I was diagnosed.

How are you able to manage having celiac disease and being a runner? Is it hard to run while being GF? There's definitely been a learning curve. I added a page focused on running with celiac disease last year but in a nutshell, I avoid processed foods as much as possible when I am training for races, I use Nuun tabs, which are all GF, as my electrolyte replacement, and I have been using Picky Bars as an energy source for the last 6 months or so. I also eat a LOT of bananas. If I am feeling utterly fatigued, have been recently glutened, etc. I take as many rest days as needed and have also cancelled races.

Do you take a probiotic? Yes, I have taken Florajen 3 for the last few years. I have received multiple reports of their testing for gluten and this probiotic consistently tests out at < 5ppm of gluten. Although probiotics are not part of the "standard of care" for the treatment of celiac disease, I take them because I had persistent IBS symptoms after I went GF, and these symptoms have resolved since starting Florajen 3.

What type of doctor are you? Do you see patients with celiac disease? I am a Neonatologist and I take care of premature and sick newborn babies. I do not see patients with celiac disease in my daily practice, nor am I able to do celiac or NCGS consults via phone or email.

How to you manage eating GF when you travel? I learned to always travel with a lot of food after being stranded at an airport without food shortly after my diagnosis.  Some of my favorite foods to bring on trips include bananas, apples, almonds, cheese sticks, KIND breakfast bars, and individual servings of GF oatmeal. When I am traveling to a new city I use the Find Me Gluten Free app, Yelp, and I also check out the blogs of others with celiac disease, like Gluten Free Traveller and Gluten Free Mom.

Just checking in to see why you haven't posted much lately? Are you okay? Yes, I'm okay. We have continued to settle into our new life in Boston, I am still adjusting to my new job position in which I split my time working between two neonatal intensive care units, and I've struggled with  burnout in recent months. I've started to focus on trying to get quality sleep after helping to guide a friend through the diagnosis and treatment of a sleep disorder over the last year. In the past I sacrificed sleep to work on this page, but I will no longer be able to do this. So, I plan to continue to read, write, and post, but not as much as I used to…

Thanks so much for reading. I would be more than happy to answer any additional questions in the comments section. And please let me know if any of you are interested in doing a guest post in the upcoming months.

In reply to Vik.
Hi Vik!!!

I am so excited to hear from you. It’s been a long last 6 months here. I’ll be heading to both FL and CA this spring, those will be the next times that I will have to prepare to have decently long flights with food.

Hoping to be able to post a little more often. I actually have some friends of a friend who are re-designing this page for me, and we hope to have it up and running by the new year.

Please keep in touch and take care.

7/19/2016 5:16:04 PM
In reply to Kayo.
Hi Kayo,

It sounds great that you are ready to get checked out. I hope that all of your testing goes well. Thank you for stopping by my page.

7/19/2016 5:15:44 PM
Hi Jess, yay I actually got an email notification of this post! Thank you for the update, I have been wondering how your big move went. I’m sorry to hear about the burnout, so…great plan you have about focusing on more sleep. It’s so important…I know, even though we have other “stuff” we want to do, that pulls us away. Gosh, do I hear you about traveling with food. When I travel, a big part of one suitcase carries food, as does the backpack I take on a plane. Good to hear from you!
7/19/2016 5:15:22 PM
I have been having all of the symptoms for years. For the past five years, off and on tingling numbness in feet. I am almost certain that my rash will be the diagnostic one. It is high time that I go in for a diagnosis. Will see q Derm for this rash.
7/19/2016 5:15:04 PM
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