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.

 

Day 2 at Mayo– testing day August 20, 2014

Today was testing day. I had to start fasting at 8pm last night. With my hypothyroidism (Hashimoto’s) I’m pretty use to doing fasting blood draws. However, I had a lot of blood drawn this morning—15 vials! That’s a record for me. I think the most I’ve had drawn was 7. I felt like a blood bank.

 

From there, I went straight to Nuclear Medicine for my gastric emptying scintigraphy. This test determines how fast (or in my case, how slow) it takes for food to digest and move on to the small intestines. I’ve not had this test done before, but I’ve learned it’s the gold standard for testing for gastroparesis. It’s also a test that many hospitals don’t have the technology to do. It’s not invasive, but I can’t say I actually enjoyed the experience.

 

At 9am, I was given breakfast laced with radioactive isotopes. It was 2 eggs, gluten-free toast and a half pint of milk. (funny sidebar- I grew up in Mount Joy, PA, a few miles from Three Mile Island and my family evacuated during the 1979 accident.  I’ve joked about being radioactive from time to time). I don’t normally eat breakfast, simply because I don’t feel hungry and I get sick every time I eat. I had to eat this breakfast in 10 minutes. The amount I had to eat in 10 minutes, was more than what I typically eat during the course of the day. So, I knew I wasn’t going to be feeling great for much of the day.

 

After I ate breakfast, I got scanned. I had to get scanned every hour for 3 hours. Then, it was time for lunch. Ugh! I really didn’t want to eat any more. But, I had to as part of the test. Again, the lunch was laced with radioactive isotopes. Lunch was 2 slices of gluten free bread, 5 ounces of deli-sliced turkey breast, Jello, and 12 ounces of water. I was getting nauseas just looking at what I had to eat. Fortunately, I had about 30 minutes to eat it all. It took all I had to finish it and I absolutely did not feel well—mainly stomach pain. I got scanned again 2 more times. In total, this study lasted 7 hours. Oh, I couldn’t eat or drink ANYTHING but what was given. I was eager to get back to my hotel room and lay down.

 

That was my day. I’ve been in bed for the past 5 hours and I’m feeling better. I’m excited to go to my appointments tomorrow and see what my doctors say.

 

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.

 

Challenges in Living with Autoimmune Diseases June 14, 2014

Filed under: Everyday Living with Celiac Disease — Michelle @ 12:13 am
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So, it’s been a while since I’ve chatted.  I want to share with you some challenges in living with autoimmune diseases.  I was diagnosed with Celiac Disease about 6 years ago.  I also have Hashimoto’s which I’ve had for a while.  Both are autoimmune diseases and both are quite manageable– gluten free diet and medication for the hypothyroidism.  My oldest daughter also has both diseases.

 

We’ve been told that if you have one autoimmune disease, you’re susceptible to other autoimmune diseases.  I’m now struggling with this issue.  For the past 6 months I’ve had pretty bad GI issues, joint stiffness, muscle pain, extreme fatigue and sensitivity to the sun. After a lot of blood work and specialists, I learned I have Systemic Lupus.  I see a rheumatologist and right now my only treatment is for the joint stiffness and pain. I’m taking a B-12 nasal spray to help with my energy.  Other than that, I’m still feeling crappy. I can’t be out in the sun and I have to limit my physical activity so that I don’t overexert myself.  Grrrr!!!!  I had to give up tennis!! I need to take breaks, often naps.  However, I’m so glad that I have my own business.  I’m not able to work a scheduled 8-9 hour job every day.

 

My GI issues are the most problematic.  It makes me weak and I’m losing weight. I’ve seen my GI doctor and he’s concerned it may be one of 3 conditions– Crohn’s Disease, Colitis, or Lymphoma. Here are my thoughts on this:

Crohn’s– Well, that would just be a cruel trick of nature to have both Celiac and Crohn’s.  So not cool! However, it doesn’t appear that it’s common to have these three together.

Colitis– Still not cool!  It’s common in Systemic Lupus. Treatment is typically corticosteroids. I’m not sure about how I feel about that since I have a bad reaction with steroids.

Lymphoma– Seriously not good!  My doc’s concern with this is two-fold.  I’m “clustering” autoimmune diseases which seem to indicate something seriously wrong with my immune system.  Also, he’s concerned that I had Celiac untreated for so long that it may have stirred up some malignant craziness in my intestines.

 

So, I’m guessing the lesser of those evils may be Colitis? Anyway, this has been on my mind.  I’m getting “scoped” June 30.  Yep, this 36-year-old is getting her first endoscopy and colonoscopy at the same time! Pure joy! I’m reaching out to my Celiac/Autoimmune Disease friends for thoughts and experiences.

 

 

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/

 

 

 
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