Do I have celiac diease? Preparation and questions for your first doctor’s appointment.

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So, you’ve read my post about finding a doctor and now you are ready to make your first appointment! Congrats, that is the first step in getting answers for whatever has been plaguing you for years. I am not a medical doctor and do not understand the complexities of testing and diagnosis for celiac disease on the back end, so I am not going to post what type of medical tests you should ask for or have done. I will post links at the bottom of the post from other credible websites for you to review.

Here are my suggestions and tips for getting the most out of your initial doctor’s appointment for gluten intolerance and/or celiac disease.

Before making an appointment:

1. Find out if your doctor actually has experience treating and diagnosing celiac disease or other gluten related problems. There is no point in going to see a doctor who doesn’t specialize or isn’t familiar with these issues. You are just wasting time on getting answers.

2. Ask how long you will have for your first appointment. My doctor allows 30 minutes for a first appointment and 15 for follow ups. Don’t waste your time with the doctor chit chatting!

3. Prior to your appointment, write down all of your symptoms and chronicle your medical history. This will be much easier to show your doctor and review than sitting there trying to think of them all and realizing you didn’t bring up important ones after you already left.

4. Get your medical records from your other doctors sent over to the new one. You will need to sign a medical release of information and might have to pay a fee but it will be worth it for the new doctor to have all your information in one spot.

5. Know and chart your family medical history. Again much easier than trying to remember it all in a 30 minute appointment.

6. Write down every single prescription medication, over the counter medication, supplement and vitamin that you take. Include all the doses and schedule for each of them. Even ones you might be embarrassed you take like an over the counter weight loss pill.

7. Write down why you think you have celiac disease or problems with gluten.

8. DO NOT change anything about your diet or lifestyle prior to going to the doctor and having tests done. This is essential for finding out what is really going on. You have to get an accurate picture of your body condition in order to diagnose.

9. Understand there is no pill or medication for celiac disease if you do in fact have the autoimmune disease. The only way to manage it is with a gluten free diet.

10. Don’t panic or come to your own conclusions prior to going to your appointment. Be educated on your history, your body and yourself to provide the doctor with the exact picture of what is going on. This is the BEST way to get an accurate diagnosis of whatever is upsetting your body.

Questions for your doctor at your first appointment:

1. How do you diagnose celiac disease? What blood tests do you run? Do you test for the celiac genes? Will you want me to get a bowel biopsy? This past year I’ve realized doctors have so many different ideas of diagnosis. I’ve heard one speak about biopies being the only way to tell and others say genetic presence with condition improvement upon removing gluten are just as acceptable. It’s important to understand your doctor’s beliefs and thinking on the diagnosis component.

2. How quickly does you lab turn around results and when can you make your next appointment.

3. Do you provide aftercare, follow up blood tests, recommendations for support groups in the area and additional help?

4. If I don’t have celiac disease, what other conditions could I have with the symptoms I’m experiencing?

5. Can you refer me to a registered dietician specializing in celiac disease?

6. How often will I follow up with you after my original test results?

7. If I have nutrient deficiencies, what is you protocol for treatment?

8. What other tests should be run along with the celiac disease testing?

You know I love your feedback – Post below for others to see if you thought of things I missed!!

Websites for celiac medical tests:

 

http://www.csaceliacs.info/diagnosis_of_celiac_disease.jsp

http://www.cureceliacdisease.org/living-with-celiac/guide/diagnosis

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

 

Food Addiction? What is wrong with us? Changing the way we think about food.

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I posted on Facebook yesterday what foods people missed most from their gluten free lifestyle. The purpose of this post was to see what types of food I could play around with or find as a great substitution for what everyone was missing.

54 People commented on my post and the comments as I read through them disturbed me. I completely understand that we miss bread, pretzels, beer etc but some of the things that people wanted to have so desperately are part of the problem in society.

I recently spoke to an Ohio State University group called CHAARG -Changing Health, Attitudes, and Actions to Recreate Girls – They came to Bexa Body Fitness for a group fitness sampler and a little seminar on healthy eating in college. I spoke to them a lot about food options and ways to make better choices when eating on campus.

I can’t emphasize to people enough at my fitness studio:

  • If the ingredients look like they should be on a shampoo bottle you probably shouldn’t be consuming them.
  • There is nothing FRESH about Subway – Their lettuce is out of a bag and their meat is as processed as you can get. The sandwich is entirely bread and why do you always smell when you leave there?
  • I’ve never met anyone in my life that told me they were addicted to carrots, sweet potatoes or steak. I do however on a daily basis meet people that can’t give up artificial sweetener, diet coke, candy, sugary coffee drinks etc. What does that tell you about those foods and how they are reacting in your body? Your brain is addicted to these substances and no one seems to think this is a problem.

The list of foods people missed goes something like this:  Pizza, biscuits, donuts, pie crust, pizza, flour tortillas, bread, pizza, twizzlers, crackers, hot dogs, Subway, Arby’s, pizza, McDonald’s, funnel cake, Ciabatta bread and so on….

ON TOP OF THIS – I see an incredible amount of children and teenagers also addicted to these foods.

I believe that when people think of food addictions, they think of the television shows on TLC about people being cut out of houses or Extreme Makeover Weight Loss edition. But, we are all addicted to food in some capacity. Some people are able to handle it better than others but very few people recognize the problem/trend in our society.

Our society pushes low fat, low sugar, no fat, no sugar, low cholesterol and anything else with “low” or “no” in the front of it.

Do you know how those things get to be that way? They pump the foods filled with chemicals and fillers so they taste great and food us into believing they are healthy or good for us. They aren’t. Our brains are so fooled and duped into thinking all food should taste this way that eating a nice whole meal of protein, potatoes and veggies is like eating cardboard.

All of us that can’t eat these other foods and desperately long for them are proving my point. We are just replacing these junky gluten filled foods with junky gluten free foods. While it is fine once in a while, it is not ok all the time. Moderation is key but when options are so limited, I’m finding it much easier to go overboard on gluten free foods.

I’m absolutely not saying that I don’t fall into this trap. There are certain things I know I miss desperately and would love to have again. There are foods filled with gluten and gluten free that I know I can’t keep in our house because I won’t be able to keep my hands off them.

But I understand now how all this affects my brain chemistry. I realize how screwed up our society is to see that eating “I can’t believe it’s not butter” is better than eating regular butter. Do the research. Butter won’t kill you but I’m pretty sure whatever the hell is in that fake butter will.

We are the fortunate ones. We can’t eat that crap or we get sick. We are the ones that have the opportunity to heal our bodies and wean ourselves from the stuff we once knew.

If you get anything from this post, it might just be the 3 bullet  points I posted above and you might just think of a shampoo bottle next time you check out ingredients!

But I challenge you to think about these things the next time you are longing for a brownie or piece of pizza.

 

Bye Bye Greek Yogurt ~ You will be Missed :(

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Bye Bye Greek Yogurt

Well it’s official. I have a lactose intolerance and I’m not happy about it. After a few weeks of feeling great and being steady on a strict gf diet, I decided to buy 1 container of Greek yogurt and try it out tonight.

After my urgent run to the restroom a few minutes ago, I can confidently say I will no longer purchase any regular yogurt or greek yogurt. I’ve already been buying and using organic lactose free milk but I’m really bummed. Greek yogurt has always been my go to snack. Filled with protein it’s the perfect choice with berries!

Kefir
Kefir

Interestingly enough, I’ve been drinking these Kefir probiotic smoothies with my vitamins throughout the day and it not only helps me get them down without gagging but tastes pretty good.

An RD once told me that the probiotics cancel out the lactose thus allowing our bodies to process the yogurt. I consume probably a 1/2-1 cup throughout the day and don’t have any problems. I actually really enjoy them – they are thick and help tremendously with supplements.

Part of the reason I love Greek Yogurt is the convenience and ability to grab one and eat it quickly – along with feeling satiated after that 1 container. If I ran into the grocery, I could grab one on the way out and eat it right then and there! Or if I needed something quick in between a personal training client – my dear friend Greek Yogurt was always there to fill me up and fuel me for my next client.

But that’s ok. I can still eat cheese with no problem! I will find other things to enjoy for sure. I’m going to wait a couple days and then try cottage cheese to see if I have to rule that out as well. What’s better than a fresh peach cut up in a cup of cottage cheese?

According to the Kefir website,

How can kefir help?
Kefir is the most favorable milk product for people suffering from lactose intolerance. A recent study in the Journal of the American Dietetic Association examined people struggling with lactose intolerance and found that kefir can actually improve lactose digestion. The reasoning? Kefir’s live, active bacteria cultures help break down the sugars in milk.

Comments

  1.  Judi says:

    LOVE kefir! I should definitely try it with the supplements. Water just doesn’t always cut it. Sorry to hear Greek Yogurt and you will be breaking up . Glad you and cheese are still going steady

     

  2.  Plipe says:

    yes I found out the hard way greek yogurt is the devil! so tempting yet soooo bad for our tummies

     

  3.  martine says:

    Coconut yogurt is pretty good. And sheep yogurt is great with such a low lactose content it may not bother you. To achieve the greek yogurt texture put cheese cloth in a strainer, fill with your yogurt and refrigerate overnight. It reduces the liquid content and gives it a creamy greek texture – great to make tzatziki with too.

     

  4.  Donette Dowell says:

    Hi ……..I was wondering have you ever heard of NAET…….it is an allergy elimination technique that is getting amazing results for people..I am hopeful because I have alot of food and vitamin and minerals allergies at the present time. Google it and tell me what you think. I just started the program…..alot of chiropractors learn the techniques. ~D~

     

  5.  rouquinexx says:

    I read somewhere that many celiac person are lactose intolerant, but by being on a GF diet may help them to regain that tolerance. Kefir is actualy a very good way to get a better digestive health with or without celiac disease. I have some fresh at home from a original mixture. Reproducing again and again. Yummy !

     

  6.  Jen says:

    Fake rice pudding: cottage cheese, cinnamon, stevia and raisins.

     

  7.  celiacandallergyadventures says:

    I was worried after going gluten-free that I would find out I also have a problem with lactose. Thankfully, I haven’t noticed any issues because like you, Greek yogurt is my go-to snack!

    I have heard that after being on a gluten-free diet for 3-6 months though, that people who originally had lactose intolerance are now able to tolerate it. I’m not sure how long you’ve been gluten-free but something to think about/hope for, anyway!

     

  8.  Judy says:

    I had a bad reaction to a store brand greek yogurt a couple of weeks ago (i.e. forceful vomiting). Have not been able to try it again since; similar to a reaction to a food that you ate right before the virus kicked in. Wondering now if I am lactose intolerant as well. I will try the Kefir probiotic. Thanks for you sharing…really;o)

     

  9.  Amanda Y says:

    After being gluten free (I’m quite sure it’s full celiac, but as went the nontraditional medicine route, unfortunately for taxes, I can’t officially say that), I realized last month I’m also lactose intolerant :-(. It’s so hard to work around cream sauces, thank goodness I can still do cheese. I have been still having yogurt and butter without too much problem–but cream, cream cheese, ice cream, milk are all out! Looking forward to more info and recipes on your blog now!

     

  10.  Cher Stewart says:

    Liberté makes a lactose-free Greek Yogurt, Yoplait makes lactose-free yogurt, there’s Green Valley Lactose-Free products (they make a sour cream, too!) and that’s how I deal with my intolerance. ^_^
    Cher Stewart recently posted…Imperative Details Concerning The Planet Of Internet Hosting

 

Speaking Engagement: Cleveland Celiac Awareness Tour 11/17/12

Come see me on November 17th, 2012 at the Celiac Awareness Tour!!

You can get your ticket online here!

Tons of vendors and speakers, lots of foods to try and of course come meet me!!

I’m going to have an awesome raffle gift at the event so be there to try and win it.

I’ll be sharing my story and answering questions.

January’s stop will be in Pittsburgh… I will confirm the date for you shortly!

What cities would you like to see me visit?

PLC 30 Day Gluten Free Challenge – Important FAQ’s

30 Day Gluten Free Challenge
30 Day Gluten Free Challenge

I am completely over whelmed, honored and excited at the response for this challenge!! A couple of quick things based on emails and question’s I’ve received since the initial post….

  1. You do not have to eat the protein or dairy items. You can make some substitutions and I’ve also included a list of vegetarian protein sources on the Facebook Group Page.
  2. You do not need to actually complete the competition part of the program – you can do it on your own, with us or enter the competition. It is completely up to you!
  3. You do not have to have celiac disease or a gluten intolerance to do the program! If you want to give a try – that is awesome!!!
  4. We are starting the challenge on 10/22/12 but you can do it whenever you want! Just the part with the competition is officially starting. You can get the plan without competing.
  5. The workouts can be done at home or at the gym. They are quick, intense and get the job done.
  6. I am not a nutritionist, doctor or RD. This is a basic gluten free plan based on my own personal knowledge and experience in the fitness industry. I am a certified personal trainer and group fitness instructor, business owner, lifestyle coach, fitness competitor and personal weight loss story person.
  7. You can find the 30-day plan and other materials on the FACEBOOK group page – once I figure out how to get it as an easy download thing on my blog – I will add that too. Just waiting to get my new fancy schmantsy blog up and running!!
  8. Let’s have some fun.

I started a Facebook Group page for us to hold each other accountable, post our goals, interact with each other and become our own little community!!! Join here

 

Kroger Grocery Store making BIG Gluten Free Changes in 2013!

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Kroger!

Today I had the pleasure of being one of the guest speakers for the Kroger Natural Foods Summit in Indianapolis, Indiana. I was invited to tell me story and give their store managers/buyers some insight on gluten allergies and celiac disease.

It was exciting to find out some great things they have planned for 2013!

Gluten Free Tags
Gluten Free Tags

First they plan on introducing many more of these gluten-free tags under the foods on the shelves. They have some already but it never did seem consistent throughout the store. These are great because they allow you to quickly identify the gluten-free options on the shelves! You will see them in some of their stores already but their main focus is to help consumers find the foods they need.

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Lots of Gluten Free Foods

Depending on which Kroger store you go to, you will find many options on gluten-free foods. The problem with their stores is the foods are all over the stores making it harder to shop there and time-consuming. They said the second most common question beside “where is the restroom?” is “where is your gluten-free section.” Well, guess what! They are taking note of that and working to find a better solution for all of us.

Whether it is a dedicated natural foods section with all the gluten-free items or a store map indicating where things can be found, they are focusing their energy on making our shopping experience better.

They also want to be able to provide a large selection of items at the lowest possible prices for their consumers. Now that’s what I’m talking about!! They are very motivated in bringing all of our favorite brands into their stores to help all of us shop easier.

I told them the easier it is for us to shop there, the more money and customers they will be getting because us gluten-free peeps are some loyal, loyal fans!

The first step was just me being there to educate them on celiac disease and what it means to be “gluten-free.” Only a couple of people in the audience heard of celiac disease or knew what it was.

I give Kroger 2 huge gluten-free thumbs up for taking the initiative to help their customers and make our lives even better (and easier).

And I want to thank all of them for enjoying my “crap my pants” stories!!

What suggestions do you have for grocery stores that I can emphasize as I continue my speaking engagements all over the place??

My speaker tag!
My speaker tag!

 

 

 

 

 

Moving Forward! New Content! New Ideas! Help Me!!

It’s 2am and I’m wide awake working on a million different things. As a business owner and fitness expert, I’m often pulled in different directions. This blog and community is something I’ve become very passionate about and is important to me. The Pretty Little Celiac community is near and dear to my heart and I’ve always been one to help others, share information and educate. My favorite job I ever held was a Training Coordinator position in child welfare. I designed my own trainings, taught new staff and provided advanced training for long term employees.

Then I fell in love with fitness and now my personal journey with gluten free living and celiac disease!

Help me help you…

I want to know what you need.

Tell me…

If I created different types of media would this be beneficial to you??

Podcasts

Webinars

Video Blogs (I admit I hate the video camera)

What kind of written content can I create in free downloads that would benefit you?

How to get started on  gluten free living?

Living gluten free in college

Clearly we’ve all established this need and desire for me to share my story, hear about yours and get fat trying all these gluten free foodie products for you!!! I want to broaden my horizons and methods to help you but I want some feedback before I spend hours making podcasts only to have no one listen in!

Any other ideas?

I’ve got 1 big, brownie cake from Rose’s Bakery for a random giveaway to someone who posts on this blog post and gives me ideas….

Celiac and Ear Wax: Is there a connection?

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Ear Wax and Celiac?

My entire life I’ve been accused of “yelling” or speaking too loudly. I never understood what anyone was talking about because I spoke in my normal voice. Regardless, I seemed to always get hushed. I’ve always found myself asking people to repeat themselves or saying “what.”

In 2005, I jumped in a pool and it caused my ear drum to pop leaving me in the emergency room with my new boyfriend. Talk about embarrassing. Aaron sat there while I laid in agony on the table as the nurse pulled ear wax balls out of my ear canal. The doctor said I must have had an ear infection for a long time and it finally had enough with the pool water. I left the emergency room with a ton of medication and a wonderful boyfriend who later became my husband.

I know you aren’t supposed to use Qtips – but they feel SO good. Every single time I use them, I get so much junk out of my ear. I realize I’m pushing more probably into my ear canals but I don’t think what comes out of them is normal.

The ER doc referred me to an ENT specialist that I went to off and on for a few years. He always seemed to have the same reason for the wax and pain in my ears – “seasonal allergies.” I honestly think that’s the generic term for everything and can just be cured with allergy meds.

It wasn’t until this year when I started putting all the pieces together. I recently found this article on the Livestrong website about Histamine and ear pain with celiac disease:

“During an allergic reaction to gluten, various chemicals are released that cause your blood vessels to dilate and irritate soft tissues. Histamine is the primary chemical in your body that causes inflammation and swelling to occur in soft tissues. As histamine levels increase in the soft tissues in your ears, swelling causes blockage in your inner ear that can lead to congestion. The congestion may also cause fluid to build up within the ear, causing temporary hearing loss.”

Read more: http://www.livestrong.com/article/542914-gluten-ear-problems/#ixzz28WfLkMDJ

Ear wax is 20 to 50 percent fat, and it coats the ear canal to moisturize it, fight off infection, and help keep dust, dirt, and other debris from getting deep inside your ear. Maybe it is also a protector against other things your body doesn’t want too and it’s a response from having the gluten poison.
I did notice when I stopped eating gluten, my ear pain went away and my “seasonal allergies” seemed to disappear. There are occasions when I think I’ve got a little ear pressure or runny nose but sometimes that’s just normal life.
Again, I’m not a doctor! Just one gal describing her symptoms and signs wondering out loud if they are all related. Sometimes it takes a while to put all the pieces together… With over 200 symptoms of Celiac disease… how could anyone piece all this stuff together??

 

 

Review: Tall Papa’s Gluten Free Bread Crumbs

Tall Papa's Breadcrumbs
Tall Papa’s Breadcrumbs

Since being diagnosed, I really haven’t found a good gluten free breadcrumb that still maintains its integrity after being coated on our fish. I was thrilled when Tall Papa’s reached out to me to try and review their gluten free breadcrumbs!

Last night, my husband made fish tacos. We love Mahi Mahi to put in our tacos and it’s also a really great fish to make breaded. We used the citrus lime flavored ones and they are amazing!

Nutritional Facts:

Brown rice flour, water, tapioca flour, egg whites, evaporated cane sugar, organic canola oil, xanthan gum, yeast, sea salt, enzymes, maltodextrin, lime juice, lime oil

After coating the Mahi is egg whites, we rolled the fish in the bread crumbs and baked it for about 25 minutes on 350 degrees. When we took the fish out of the oven, I was thrilled to see how crispy and thick the breading still looked after baking!

Next up for these little delicious treats – Meatballs!!!

Tall Papa’s Citrus Lime Breadcrumbs
Tall Papa’s Citrus Lime Breadcrumbs

We still have 1/2 the bag left and another bag of the cajun spice also to try out in the next few weeks. I’ll update this post after trying them too!

You can find Tall Papa’s Online – http://www.tallpapa.com/Tall_Papa/Home.html

Twitter: https://twitter.com/Tall_Papa

Facebook: https://www.facebook.com/TallPapaGoods?ref=ts&fref=ts

 

That’s It… I’m Done… Time for a Change… Who’s With Me?

For those of  you who also read my bio, you know that I am a fitness expert as well as a gluten free/celiac blogger! Well, the celiac diagnosis has taken a toll on my health, not to mention the hypothyroid problems that came along with the gluten allergy.

I love working out. I really do. Admittedly, I haven’t been adhering to my own standards and beliefs because honestly I just haven’t wanted to. I spent the last 8 months trying to figure things out, frustrate myself and run myself in circles just with the celiac disease – let alone work out.

Yesterday, I ran the Hell Run 5k with my husband and today – I hurt. My knees throb, my back aches, my shoulders are sore and my core is tender. When I ran the Mud Ninja in July, I felt fine. What happened to this fit girl in the picture above? This is what I frequently say to myself almost every day when I look in the mirror. Sure, you might not notice anything in the photos but I feel the difference.

I feel weak.

I feel vulnerable.

So I decided today will be my last day feeling weak and vulnerable. Starting tomorrow, I’m taking control of my health. I’m taking control of my fitness. I’m taking control of my diet.

October 1, 2012 is the day I take control.

I saw online that October is Celiac Sprue Awareness Month, but so is May so I’m not entirely sure which one is correct. But, I think its a great place to get started. I’ve purchased all my “whole” foods. No more snacky snacks. No more processed junk. Just good, whole foods.

Steak, fish, rice, potatoes, green beans, sweet potatoes, tuna, spinach and berries. That’s it for the next few weeks. I’ve got my coolers out, my containers ready and my food prepped. Preparation is key. I know how to do all of this – I just need to stick with it!

Back to my workout regimen of 5 days per week. It feels good for me to be in the gym. I need to sweat and pump iron

I’m incredibly busy the next 10 weeks and I absolutely have to make time for myself.

No excuses. Hold me to it!

Who wants to commit to an October change with me? Post your October resolutions below and let’s get this party started!!!

I’m going to promise Coach I will take him to the park at least 3-4 days per week so he can get exercise too!