Category Archives: Diagnosis

May is Celiac Awareness Month

gluten free jacksonville may is celiac awareness monthIt is amazing how far Celiac Disease Awareness has come in the almost 10 years since I was diagnosed.  There are a few things I am happy about and a few things I would LOVE to see change as we try to raise awareness of Celiac Disease.

For those of you new to the Celiac world- according to The University of Chicago Medicine Celiac Disease Center, Celiac disease is an inherited autoimmune disorder that affects the digestive process of the small intestine. When a person who has celiac disease consumes gluten, a protein found in wheat, rye and barley, the individual’s immune system responds by attacking the small intestine
and inhibiting the absorption of important nutrients into the body. Undiagnosed and untreated, celiac disease can lead to the development of other autoimmune disorders, as well as osteoporosis, infertility, neurological conditions and in rare cases, cancer.

Things that make me happy about where we have come with Celiac Awareness:

  1. Every grocery store has some type of gluten free offering beyond just Whole Foods and specialty stores.
    gluten free jacksonville may is celiac awareness month gluten free jacksonville may is celiac awareness month
  2. Restaurants are beginning to educate their staff better to avoid cross contamination.
  3. Friends and family care and actually want to learn what “gluten-free” means- sometimes even taking steps to avoid cross contamination and make you a meal.
  4. We are seeing more and more restaurants that are dedicated gluten-free (no worries about cross contamination!!)
  5. Sooo many recipes online!!!  I have found the joy of cooking through this diagnosis.gluten free jacksonville may is celiac awareness month
  6. Travel has gotten so much easier.  I have enjoyed trips on Cruises to the Caribbean, Ireland and Italy that were amazing and I didn’t go hungry once!gluten free jacksonville may is celiac awareness month

Things I would LOVE to see changed about Celiac Awareness:

  1. The question: is this a serious allergy when I say I am “gluten-free” and “living with Celiac Disease.”  I dream of a day when I see “gluten-free” on the menu and I don’t have to say a word afterwards.  I hate to say it but french fries fried in the same oil as breaded chicken fingers should not be labeled gluten-free.
  2.   Stop making fun of the gluten-free diet.  Yes there is a large percent of the population who use gluten-free as a diet tactic but there is an even larger group of people- approximately 3 million- that have to follow this diet to stay alive.
    gluten free jacksonville may is celiac awareness month
  3.  Incorporate a laws- similar to what these countries have done– to protect people living with Celiac Disease.
  4. Stop using gluten-free labeling as a marketing tactic.  There are laws in place but there is no one enforcing these laws.
  5. Provide better subsidies for those of us living with Celiac Disease.  Gluten-free goods are very expensive. When I went gluten-free my grocery bill per week was $50 more expensive and continues to be that way.  Thank goodness I live near a Trader Joes!
  6. Educate more primary care physicians on the signs and symptoms of Celiac Disease.  When I was diagnosed, almost 10 years ago, my physician was very skeptical when I asked to be tested for Celiac Disease.  I had done a ton of research online and that was the only thing I could find that matched my symptoms. She is one of the top doctors in our area and she thought it was a waste of time.  But she did it and was extremely supportive when the results came back.

What has your experience with Celiac Disease been?

Resources:

  1. University of Chicago Medicine – Celiac Disease Center
  2. Celiac Disease Foundation
  3. Beyond Celiac
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7 Things I Have Learned Since My Celiac Diagnosis

gluten free jacksonville celiac disease I was diagnosed with Celiac Disease in November 2017. Since then the gluten-free world has changed and so have I.  I feel a little more confident about how to eat, I am comfortable talking with restaurant staff in front of friends and I have learned not to hold up the entire tables order when giving my specific instructions. But there are some other big things I have learned. Let me share them with you!

1. Gluten-free does not always mean healthy. It is so easy to get caught up in the gluten-free breads, desserts, pastas and other processed foods. Many times those foods are high in sugar, fillers, fat, etc. that are not always good for you. While I am not perfect and I enjoy breads, cupcakes (icing is my weakness) I am trying really hard to stick to whole foods and have even tried to eliminate sugar and carbs completely. It is really important to read labels.

2. Gluten-free does not always mean celiac safe. In my early days, I thought if it was on a gluten-free menu it was safe. Many times restaurants will label fries and wings as gluten-free. Many times those items are fried in the same oil as chicken fingers or other breaded items. I try to always question items that I know will be fried or I avoid them all together and stick with salad and grilled items. Even a few tortilla strips on top of a salad can be agony for someone living with celiac disease.

3. I have gotten a little bit boring with my food. I eat at a lot of the same places because I feel safe. I feel like when someone asks me where I want to go it is one of these restaurants: Tacolu, Bonefish, PF Changs, Kamiya 86, Moxie, Epik Burger or Sake House. All places #1 are close to my house and #2 are places that make me feel safe. However, I am always up for trying something new even if it means I may have to spend extra time talking with my server before I order. More and more restaurants are educating their staff on the needs of gluten-free patrons.

4. I always have snacks on me. There is nothing worse than going to a work meeting and seeing that everyone is given a sandwich or wrap and I am stuck there for 3 hours or being on a plane where the only snack options are pretzels or cookies. I always keep some sort of nuts in my work bag and when I travel I like to bring peanut butter, gluten-free crackers, gluten-free pretzels and apples or grapes because no one wants to sit next to someone who is hangry.

5. I have a huge fear of being stranded without anything to eat. This is similar to #4; when you live with celiac disease the convenience factor is taken away. Fast Food restaurants are not always available and able to accommodate, gas stations have limited availability and coffee shops and other quick stop places don’t always have gluten-free items available. This has caused me to perhaps overeat at times and has got me into trouble with my weight. It is hard to find that balance between eating before you go somewhere and not having any options when you get to the event. This happens mostly when I go to weddings, dinner parties, on trips, and going to a friend’s house that doesn’t know I have celiac disease.

6. I make mistakes. I sometimes get lazy and it has come back to bite me in the you know what. Sometimes at certain restaurants that I trust I forget to tell the server that I am gluten-free and dairy-free . While most of the time I am fine, there have been times when other ingredients that are not gluten-free end up on my dish. This is not only annoying for me it is annoying for the server and those dining with me because they have to re-make my food
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7. I need support. It is easy to feel like the odd man out when you are gluten-free and dairy-free. I occasionally get comments like “oh my gosh what do you eat” or “don’t you just want to cheat.” But overall my friends and family know that I am gluten-free and they are very supportive. My husband is extremely supportive we don’t have any gluten in our house. On Monday nights we rotate houses for dinner with some of our friends and it is amazing to see how friends say “gluten-free really isn’t that bad.” When I was diagnosed I felt like such a weirdo but now my friends will call and say “I am making dinner and here is the menu what can’t you have” or “what do I need to avoid for this recipe.”  People don’t realize just how happy this makes me.

What have you learned on your gluten-free journey? What advice would you give to someone newly diagnosed?

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Testimonial: Celiac Disease Diagnosis Later in Life

Being somewhat new to the Celiac world I can still sympathize with those who are newly diagnosed. My friend Kristy’s dad Ben came to me recently after being diagnosed with Celiac in his seventies. When I was diagnosed with Celiac Disease I felt so lost.  I did not know anyone with the disease and the only advice I received was from my doctor who told me to do an internet search.  While I have never met with a nutritionist, I have learned so much from others who have shared tips, tricks, brands they like and restaurant suggestions. Living a gluten-free lifestyle is truly a constant learning experience. My friend Kristy and her parents were in town recently and I was really excited for the chance to enjoy a meal with them at the home of our friend Sandy and share our stories and experiences about gluten-free life.


Ben’s story.

Ben experienced extreme weight loss and became violently ill and was hospitalized about a year ago.  Doctors didn’t know what was wrong and finally someone suggested it may be Celiac Disease.  Like many people hard to diagnose, he did end up having Celiac Disease. Ben reached out to me with questions about what to eat.  Ben travels A LOT so his questions were about safe fast food restaurants (of course I said Wendy’s) and what chain restaurants were safe.  I really felt for him because he traveled to some remote locations that didn’t always have easy access to gluten-free foods.  

Ben is the sweetest man.  What is even sweeter is how much his wife Laquita protects him.  Ben has been married to Laquita for 49 years.  Laquita could easily be the first recruit for the “gluten police.”  Laquita is Ben’s biggest advocate.  They keep a mixed kitchen, which means lots of steps have to be taken to avoid cross contamination.  Ben loves southern cooking.   They live in Tennessee and biscuits were a staple in his diet.  Laquita has learned to cook using gluten-free alternatives such as gluten-free Bisquick.

One of the things that is so frustrating about this disease is the fact that we all react to gluten so differently.  In Ben’s case, he  throws up when he gets sick.  When I asked Ben one of the hardest things he has had to do he said it was eating hamburgers with no bun when dining out.  However, he finds comfort in Udi’s bread,  sea food (such as tilapia) and vegetables.

Having Celiac Disease can be a struggle for most, however it is important to see the silver lining.  It is so easy to become negative and feel frustrated.  Ben is a true inspiration.  He is so positive about his diagnosis.  There are pros and cons of being diagnosed later in life in my opinion.  On one hand you can say “I have eaten that before, I know it is good” and not feel like you are missing out.  On the other hand you may regret knowing what you are missing.

What has been the hardest thing for you following your Celiac diagnosis?  How do you find the positive in your diagnosis? Do you know someone diagnosed with Celiac disease later in life?

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Reflections On Life With Celiac Disease (year 2)

I need to vent a little bit…

I haven’t been feeling that great lately.  I know what it is.  During the weekends I am usually on the go and rarely have time to prepare my own meals.   As much as I say at restaurants:

“I have celiac disease, I am gluten-free, dairy-free and shellfish-free, please notify the chef.  Also please avoid cross contamination by asking the staff to either change out their gloves or mix my food in clean bowls and avoid breading, sauces, and spices”

…I still find a way to become sick.  During the week it is super easy to stay gluten-free I usually make all of my meals.  I still manage to get sick even when I am super strict, which makes me wonder:

  1. Is it true what they say about gluten and coffee? 
  2. Should I avoid my Diet Coke because there could be gluten in the caramel coloring? 
  3. Is it true what they say about quinoa and other grains still aggravating celiacs? 
  4. Is my non-dairy creamer making me sick?
  5. Do I need to worry about the meat I eat, do I need to be concerned if they were fed grains?

I am not one of those people who knows exactly what makes me sick.  I typically eat the same thing each week and rely heavily on vegetables and salads.  After two years with this disease I am still perplexed and frustrated.  I miss convenience and I miss being able to eat without having to describe what is wrong with me. I don’t miss bread or pizza (well maybe a little) or stuff like that, I am just frustrated that gluten-free does not always mean gluten-free for all.  Packaging is confusing and cross contamination is not always labeled or taken seriously.

Thank you for letting me share- I promise to post something positive next time…

What is hard for you? Do you have any advice for me?

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To Casein or Not to Casein, Should That Even be the Question?

On Saturday June 18th, Chrissy Kine-Bott  from Contemporary Catering  visited the monthly Celiac Support Group .  Not only did she come to share her knowledge about dining gluten-free, she made us lunch AND dessert!!!

Chrissy is a very passionate person who has gone vegan, dairy-free, gluten-free and casein-free (and all of her food is too).  Chrissy is very active on our Gluten-free Jacksonville Facebook page and was the first person (sadly, not even my doctor) to bring up the link between gluten and casein.  Casein is the main protein present in milk and (in coagulated form) in cheese and it is also used in processed foods.  While I am not that educated on the casein/gluten connection, it has made me question whether I should remove dairy from my diet because I have noticed that I am getting sick around the time I eat something with dairy.

Anyone who knows me knows that I always say “I don’t mind being gluten-free, as long as I can still have my cheese, olives and wine.”  Now I am contemplating whether to remove dairy from my diet and I am starting to get really sad.  I love cheese, I love greek yogurt and I love cream in my coffee.  While there are tons of options such as: Almond Milk, Soy Milk, etc, the thought of letting go of cheese almost seems worse than going gluten-free.  But there is still more research to be done.  While there are plenty of resources online about going gluten-free and casein-free most of them are related to children and autism.  I have yet to find information about celiac disease and the need to be gluten-free and casein-free.

Things that contain casein from WebMD

  • calcium casein, casein hydrolysate, magnesium casein, potassium casein, rennet casein, sodium casein
  • dairy products like cheese, yogurt, milk, pudding
  • butter, butter flavoring, butter fat
  • lactalbumin, lactoalbumin phosphate, lactaglobulin, lactose
  • margarine
  • nondairy creamers
  • whey, whey hydrolysate

If anyone has an answer or has talked to their physician or nutritionist about this please share with me.  In the meantime I am going to continue my research…  To casein or not to casein, should it even be the question?

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Now I am High Maintenance

After being diagnosed with Celiac Disease I thought everything would be fine because now I knew why I felt this way and how to deal with it. However I realized how difficult it was to truly know what was in the food I was eating. No more jetting down to the cafe to pick up lunch at work, no going out to lunch and ordering whatever sounded good, no more picking something up out of the vending machine and no more enjoying work birthday parties like I used to. I was never a picky eater before. I ate healthy, but loved my Sunday Bowling splurges of french fries and beer. Those days are over. In the beginning I dreaded eating, I missed all of the things I dare not ever eat again (or so I thought)- pizza, rolls, sandwiches, BEER, salad dressing, soups and many more I would discover. However over time I realized that I needed to focus less on the things I could not have and focus more on the things I could have. I could still have cheese, GOD I love cheese. I love coming home from work and a nice work out and relaxing with a glass of wine, cheese, olives and nuts. I could still have olives and nuts. I could still have meat, milk, wine, potatoes, corn and seafood. I quickly realized that a lot of the foods I ate the most of were still in my diet plan. A funny thing happened though, I started craving (more often than before) things I knew I could not have- pizza, rolls, fresh bread, pastas, BEER. There was a specific night, right before Thanksgiving, when I was with my family and everyone was getting pizza. I was hungry, I was struggling with finding food I could eat at my brother’s house and I craved Pizza like never before. After leaving my family I decided to head to a friends house and on the way I stopped by Whole Foods and decided to try and find gluten free pizza. To my luck, they had over 5 different gluten free options.  Some were organic, some were lactose free, some were vegetarian and some were just gluten/wheat free. My favorite to this day, hands down (unless I make it myself) is Glutino. This brand is amazing, they make their foods in a certified gluten free facility and the food tastes GREAT. I have tried a lot of frozen pizzas this is my favorite (though not available in all stores). At first when I was diagnosed I found it hard to know what to purchase, and what to eat. Quickly though, I found out about Gluten Free Living, PF Changs Gluten Free Menu, Celiac.com and the Publix Gluten Free List.  This was my starting point.  I learned a lot from my early days about what makes me sick and how stringent I need to be.  I am now a high maintenance girl!

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The Diagnosis

I was diagnosed with Celiac disease December 2009 at 33 years old in Jacksonville, FL. I am pretty sure my symptoms began 2 years prior. As a frequent runner and triathlete and athlete in general, I noticed my energy levels dropping after exercise whereas before my energy levels were usually sky high after a work out. I thought I just wasn’t training properly, but the more I trained the weaker I felt. I went to the doctor to explain my fatigue and she sent me to get a blood test. The blood test showed I had low B12 and Iron. I accepted my vitamins and loved the instant energy from the B12 shot each week, however I just didn’t understand why my my vitamin levels were so low. Pretty soon intestinal problems set in and the researcher and health consumer I am decided to do some research on my symptoms. Everything pointed to Celiac Disease. I was not in pain I just knew what was going on with my body was not right. I went to my doctor and told her my thoughts and she had me tested for the indicator for Celiac Disease. Long story short, blood work looked like Celiac disease so I was referred to a GI Doc, had 3 separate confirmatory tests- a special celiac blood test, an endoscopy and colonoscopy. Not something a usual 33 year old would have done.

This was very hard for me to take. I have been a fairly healthy eater all my life, I love all foods and have never been picky- EVER (well, maybe when my dad made me try liver as a kid). My favorite thing in the world is a 2 hour meal filled with conversation, wine and DESSERT. I knew things were about to change. I knew I was going to have to prepare foods at home all of the time, I knew it was going to be hard to find the time and I knew finding restaurants that would meet my needs would be difficult. Well it has been about 3 months now and I think it is time for me to share what I am learning and testing with the Jacksonville Celiac/Gluten Free Community.

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