Everyday Eating with Celiac Disease

Living with Celiac Disease

Thinking about Writing a Different Kind of Celiac Book– Gauging Interest October 3, 2014

Filed under: Everyday Living with Celiac Disease — Michelle @ 9:46 pm
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Before I dive into this blog post, I want to give you a quick follow up on my health issue.  I came back from Mayo with a little uncertainty.  However, after all my tests were done and the Mayo team consulted, it appears I was having a serious, rare side effect with one of my Lupus medications– Plaquenil.  It has caused a eosinophilic disease (white blood cell) resulting in abdominal pain and inability to eat.  I lost close to 20 pounds in 2 months.  So, I discontinued it and after a few weeks, my eosinophils are back to normal.  I’ve stopped loosing weight and I’m starting to eat a little more.  Yeah!!!

 

So, now on to my blog post… Being a Celiac is more than a diet-controlled disease.  When Celiac involves the family (like my 2 Celiac daughters), it’s a lifestyle.  I’ve come across my share of Celiac peers and I really think we have our own culture. With kids, we have to address Celiac in schools and with friends. As a professional, I’m always thinking about what I can eat and drink at lunch meetings, after work happy hour meetings, conferences, business trips, etc.  There is never a day when we don’t have “gluten-free” or Celiac in mind.

 

I love food and I love to cook. I’ve been toying with the idea of writing a book about living with Celiac.  It would be a cookbook and a basic guide of how to manage Celiac Disease.  It would also address the everyday issues of Celiac, such as working with schools and preparing lunches.  But, I think the market is a little saturated with Celiac cookbooks.  So, I was thinking of something different.

 

Last year, my husband and I spent 10 days in Germany and Austria. I love learning about other cultures! It made me start thinking about what Celiac life is like in other countries.  Is there a Celiac “culture” that is common in different countries? I’m interested in your feedback on this theme for a book.  If I pursue this, I’ll go to Kickstarter with a plan and seek funding to support this project.

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Finding Some Answers at Mayo Clinic August 19, 2014

Filed under: Everyday Living with Celiac Disease — Michelle @ 10:33 pm
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For the last year, I’ve been struggling with fatigue, nausea, and a lot of GI issues. I was diagnosed with Lupus in April and then collagenous colitis in July. However, most of my GI issues have remained problematic.  I’ve lost 15 pounds in 2 months, mainly because I can’t eat without getting sick or have abdominal pains. So, I barely eat and when I do eat, it has to be small amounts. Sometimes, I don’t feel hungry. So, I decided (with my local doctors) that I will go to Mayo Clinic for some specialized, coordinated care. I’m in Rochester, MN now and I’ll be here for the remaining of the week. So, here is my synopsis for Day 1.

It was a busy day. The sight of Mayo Clinic just screams amazing, dare I say moderately intimidating. Everyone here is nice and very helpful. My appointments started this afternoon. I met with a Research Study Coordinator first. Because of the Celiac Disease, my blood samples will be entered into a Celiac Registry. That way, it can be used for clinical studies whenever it’s needed. I’m also potentially eligible for a current clinical trial for treatment of Refractory Celiac. We still don’t know if I have Refractory Celiac, but I’m sure I’ll find out later this week. Refractory Celiac is when the small intestines no longer respond to a gluten-free diet. Let’s REALLY hope I don’t have Refractory Celiac. The prognosis is VERY poor.

 

I also met my care coordinator. She’s pretty much in charge of scheduling all of my appointments and coordinating with each doctor on my care/treatment team. Each doctor reviews all of medical information and they work together as a team solving “my puzzle.” It’s rather impressive.

 

I was seen by an Internal Medicine Resident, who basically reviewed all of my medical information. We’re still waiting for my local hospital to send the biopsy slides, so he’s pretty much relying on the pathology notes. Then, I met with Gastroenterologist, who is my lead doctor. She did my initial gastroenterology consult. During this time, both doctors were reviewing my medical records from my local hospital, all of my images, and the patho reports. They were also consulting with another gastroenterologist who was supposed to be on vacation. (I won’t use names) In the Celiac world, he is THE Celiac expert. He is actually the Principal Investigator for the Refractory Celiac clinical trial. I can’t emphasize enough about the level of coordinated care!

 

My lead doctor  was very thorough. She added a couple new tests for my visit. With the lupus and knowing that it has already affected one of my cranial nerves (the optic neuritis), she’s exploring gastroparesis, which would affect another cranial nerve (vagal nerve). Gastroparesis is pretty much “paralyzed stomach”. The smooth muscle around the stomach and small intestines isn’t functioning. This would explain my symptoms well. There is no cure for it, just the control of symptoms. It would either mean 1) a restricted diet (on top of my already restrictive gluten-free diet), or 2) a feeding tube. Both options would not be fun. I have my gastric emptying test tomorrow. We will know for sure after that’s done.

 

I ended the day with a Bone Density Scan. That was pretty easy. After today, I feel really good about this process and how Mayo handles cases.

 

New School Year– Children with Celiac Disease August 3, 2014

Filed under: School Tips — Michelle @ 12:37 am
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The summer is ending and school is about to begin. There are several items on my mind as it relates to Celiac Disease. I’m not sure where to begin, but since it’s Back-to-School time, I’ll start with my kids.

 

As you know both of my daughters have Celiac Disease. The school year always present challenges for kids with Celiac Disease. They have to pack lunches and be able to make decisions when outside food is brought into the classroom.

 

My oldest, Meg, is starting Middle School. Ugh!!! This is a difficult age—she wants to be independent yet she is still clingy to mommy. Meg hasn’t had a 504 Plan in elementary school, and I do not have any intention of doing one for Middle School. She wants to be independent and make her own decisions. I trust her that she will comply with the gluten free diet and not be persuaded otherwise. However, I know how peer pressure is in middle school. At her age, she wants to be like her peers and being “different” is not “cool”. This is probably one of the hardest times for parents—trusting your child to make the right decisions.

 

On the other hand, my youngest, Kait, will be in 3rd grade. She had a 504 Plan last year, but it has made me wonder if it made any difference compared to not have one. So, should she have a 504 Plan this year? At 3rd grade, I question whether it’s necessary. She will be packing her lunch each day. Other than that, what could be potential exposures and contamination? I think it’s best to just have a conversation with her and ask her if a 504 Plan is needed to ensure she is safe. She’s at the age in which she can make informed decisions. We’ve known she’s had Celiac Disease since she was 2. She is aware of what questions to ask and she knows our philosophy, “when in doubt, don’t try it.”

 

So, the common issue between the both of them is how do we make school lunches appealing, and not boring. Like many moms, I’ve turned to Pinterest!!!! I’m still a little novice with Pinterest, but I did get some great gluten free lunch box ideas. My girls love the “lunchables” concept, so that’s pretty much our approach to school lunches. We have 4 required lunch items—protein, fruit, vegetable, and starch. Ok, so I do allow one sweet item as well. Although we can get some gluten-free (GF) bread, we rely on GF crackers as our starch. Kait has been into chicken nuggets/tenders. Tyson brand has a really tasty GF chicken nuggets and it can satisfy the protein and starch at the same time. But, how do we make school lunches not boring?! Well, we will be working on that. I’m thinking it’s not just a variety of lunch options, but how they are presented in the lunch box as well. This will be my challenge this school year. I think I will depending on Pinterest to keep my creative juices flowing!!! If you would like to follow me on Pinterest, follow me on www.pinterest.com/michelleeiching

 

On a different note, we found an awesome gluten-free only restaurant in Alpharetta. We were so excited!!!!!! If you are in the area, check out Tin Roof Kitchen!!! The girls loved their pancakes!!!!

 

In response to CNN’s “Is gluten free food a joke?” May 17, 2014

Filed under: Everyday Living with Celiac Disease — Michelle @ 8:36 pm
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People!!!! If you do not have a legitimate diagnosis (from a real gastroenterologist) requiring gluten-free diet, stop following the FAD! Those of you who are going GF “just because” is reducing the perceived severity for those of us with Celiac Disease who have no choice but to go GF! My family can’t eat at restaurants anymore because of the new GF fad! Restaurants claiming a GF menu do NOT understand what GF means! They follow the FAD and claim to have GF menus, when in fact the menu items are NOT GF! For example, processed, pre-packaged chicken broth has GLUTEN, soy sauce has GLUTEN, generic sour cream has GLUTEN, french fries or corn tortilla chips fried in a restaurant fryer have GLUTEN, etc! Sorry for my rant, but this has been so frustrating from the Celiac community!#celiacawareness #realglutenfree

http://www.cnn.com/video/data/2.0/video/health/2014/05/16/erin-panel-gluten-free-not-needed-by-some.cnn.html

I’m just making the statement that due to the new “influx” of GF people, restaurants are catering to the Fad. Majority of the “gluten free” menu items are NOT GF. Hence, “true” GF folks cannot eat out. Not only the food is not GF, but the food preparation is absolutely not GF.

 

I hate having to defend my diet to ensure that my diet is truly legitimate.  I wish the fad would just go away.

 

Emotional Challenge having a Child with Celiac Disease February 7, 2014

My youngest daughter is 7 years old, but we’ve known she’s had Celiac since she was about 2 years old.  Last night, she had a bit of a break down.  We were packing her lunch and she was so undecided what to pack. We had several options– chicken tenders, ham and cheese rolls with crackers,  tuna and crackers, PBJ– all gluten free, of course.  She had a melt down.  She didn’t want any of those choices.  Ugh!  She didn’t want to pack a lunch anymore.  Instead, she wanted to be like the other kids and purchase a school lunch!  That broke my heart– she said she wanted to be like the other kids.

She cried so hard.  She then cried about why she has to be gluten free and how did I give her this disease.  She wanted to know how I got that disease if my own mother does not have it.  I told her that it’s just the way life is.  I decided to take a break from packing the lunch and just hold her and listen to her frustrations.  She begged me to home school her so that she didn’t have to worry about packing lunches or being at school with all the kids having gluten around her.

I told her that I truly understand.  I told her that eating with my peers is hard for me as well.  It’s hard for me to go to lunch and dinner meetings with my colleagues.  I either bring a lunch from home to the restaurant or I simply don’t eat anything with them.  I told her that it is frustrating and I wish it was easier for us.  I empathize with her.

She’s only 7 years old and she already has the passion to make a different to those with Celiac Disease.  She wants to be a doctor and make a medicine that treats people with Celiac Disease so that they can eat gluten.  She may only be 7, but she’s such a hard worker and so passionate, I totally see her pursuing this career.  As she laid with me, she told me she wished she was grown up so she can make this medicine.  Don’t grow up too quickly!!!!

This is just one of many challenges in raising a child with Celiac Disease.  As adults, we can adapt and not care too much about what other people think and say.  We can make modifications to meet our gluten-free lifestyle.  For children, it has to be harder.  Peer influence has such an effect. It’s hard to not be able to control for your environment, but she is learning these life lessons early.  I imagine she will be a stronger person as she gets older.

 

Breaking News– The Gluten Free Girl Scout Cookie!! September 18, 2013

Ok, as some of you may know, I’ve been involved with Girl Scouts for a very long time.  I’m now the troop leader for my daughters’ troop and I’m also Service Unit Director in my county.  When people think about Girl Scouts, they are thinking cookies!  Growing up, I loved Girl Scout Cookies!!!  My favorites were the Tagalongs (peanut butter patties) and the Samoas (Caramel DeLites).  Since my Celiac diagnosis, I obviously haven’t had Girl Scout cookies in a very long time.  My daughter Meghan was diagnosed last year and so she remembers what they taste like and she really missed them this past cookie season.  However, my youngest, Kaitlyn, has never had a Girl Scout cookie 😦  Needless to say, while many girl scouts around the country look forward to cookie sales, my daughters (and myself) have not.  Last year, my girls were not motivated to sell them because they cannot eat them.  When a customer asks, “what’s your favorite cookie,” it’s sad to hear my girls’ response, “I can’t eat them.” Or, in Kaitlyn’s case, “I’ve never had a Girl Scout cookie.”

 

Well, Kaitlyn may very well have her first Girl Scout cookie this year!!!  However, there is a preface… ABC bakers (one of two Girl Scout cookie manufacturers) is pilot testing the Gluten Free Chocolate Chip Shortbread Cookie in certain markets in the country.  The other manufacturer, Little Brownie Bakers, have not come out with a gluten free Girl Scout cookie product.

 

My troop is part of the Girl Scouts of Greater Atlanta Council.  I’m really hoping that our Council contracts with ABC Bakers for our Girl Scout Cookies!!!!!!!!  Stay tuned!

 

For more information about the new cookie, check out http://www.abcsmartcookies.com/gluten-free-chocolate-chip-shortbread

 

There is a petition out in the community encouraging Girl Scouts to produce a gluten free cookie.  If your Council doesn’t offer it, you can go online and sign the petition.  http://www.celiac.com/gluten-free/topic/81658-please-sign-this-petition-for-gluten-free-girl-scout-cookies/

 

 

New School Year– Some Tips for Parents of Celiac Disease September 13, 2013

Filed under: School Tips — Michelle @ 2:43 pm
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Ok, so, it’s been a while since I posted!  Many apologies!!!  Well, we’ve started the new school year and with that comes the meetings with the teachers. I’ve a had a couple parents ask for some tips in helping their children have as normal learning environment as possible.  Well it can be done!!!

1) As soon as you can, meet with your child’s teacher(s).  Educate them about Celiac Disease and what it means to the child and to the teacher.  Remember it’s not just about the gluten free diet; if you have young children, it also involves their activities and what they use in the classroom.

2) Do you need a general Health Plan or do you need a 504 Plan?  This is a conversation with the child’s teacher.  The Health Plan is more of action plan for how to handle concerns if there is an accidental ingestion or exposure.  It also can provide guidance of how to handle classroom activities (such as using Play-Doh, having cupcakes in the classroom, using food as counting manipulatives, etc).  The Health Plan is not enforceable and has very little teeth. But, if you have a good communication network and relationship with the school staff, a Health Plan may be the solution.  On the other hand, the 504 Plan is enforceable and is a formal agreement on accommodating the child to ensure a safe learning environment.  Schools are not the biggest fans of these because they are enforceable and requires accountability.

3) Be prepared for the unexpected celebrations.  As with any new school year, there will be a continuous stream of friends’ birthday party invitations.  If you have a Health Plan at school, this is where the unfortunate isolation may begin.  At my home, we freeze a dozen or so cupcakes.  When there is an in-class celebration, just pull one out and have the child bring it to school.  For outside-the-school celebrations, it’s easy to pull out a cupcake and bring it along.  Also, having gluten free frozen pizza comes in handy when there is a pizza party.  Heat the pizza and bring it with the child.

4) School lunches are not impossible!!!  There are always stumbling blocks on what to pack for lunch.  You can do sandwiches with gluten free bread, but that may get boring after a while.  My youngest daughter is really into crackers and cheese, or crackers and hummus, or crackers and tuna.  You can create a gluten-free version of the Oscar Meyer’s Lunchables!  My oldest daughter prefers wrapping a slice of ham with a slice of cheese.  And, we always pack a piece of fruit and a veggie!  If packing lunches are still daunting, but  you have a 504 Plan, then the school is required to provide a gluten free lunch for your child.  In that case, communicating with the lunch staff is essential.

Well, these are the top items to be familiar with as you start the new school year!!!!  Next week I’m meeting with my daughter’s school district re her 504 Plan! I’ll let you know how that turns out!

 

 
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