International Celiac Disease Symposium 2013: Recap Day 1

International Celiac Disease Symposium September 23-25, 2013
International Celiac Disease Symposium September 23-25, 2013

Wow. Just wow. That is all I can say right now after my first day at the ICDS 2013.

I am forever grateful and thrilled I was able to attend this monumental event in Chicago. The information I learned already is so incredibly valuable and helps wade through much of the misinformation you find on the internet or hear through the grapevine.

The biggest thing I’ve learned so far is not to trust information found on the internet, even studies! They are filled with inaccuracies, small sample sizes or inconclusive information that can spread like wildfire. There are world-renowned celiac experts at this conference, sharing their findings, beliefs and information about celiac disease.

If you aren’t sure what the heck I’m talking about yet, the International Celiac Disease Symposium is a 3 day event held every 2 years in cities all over the world. Here is what the conference is all about directly from the ICDS2013 website,

“While the 15th ICDS meeting will continue to build upon the successes of 40 years of past ICDS scientific programs, the Chicago meeting is designed to address the interests of all of those affected by celiac disease and gluten-related disorders – from physicians and researchers to patients and clinicians to family and friends. The ICDS Chicago will present two distinct interactive educational tracks. The meeting will bring together the world’s top scientists and physicians to discuss the most recent scientific advances in managing and treating celiac disease and gluten-related disorders while a separate clinical forum will be held to further educate dietitians, clinicians, and patients.“

It’s impossible for me to share all the information I learned today into one blog post so I am going provide some information based on the major points of the discussions. If you head over to Twitter and do a #ICDS2013 search, there are hundreds, if not thousands, of tweets from the event that will blow your mind!

Here are some great things I learned today:

  1. We are not born with celiac disease. Genes, yes but the actual disease can develop at any age or stage of life.
  2. Women are diagnosed 2-3 times more frequently than men.
  3. When a biopsy is done, advocate and ask for 4-6 biopsy samples to be taken during the procedure. 2 is simply not enough.
  4. There is a major lack of follow-up with doctors and celiac patients – patients must advocate for their health and not only see their doctor for follow-up appointments, but work with a registered dietitian to ensure proper nutrition is being received by the celiac patient. There are inadequate follow-up visits, no assessment of compliance with diet, no follow-up biopsies are being done and inadequate f/u serology testing.
  5. Gluten alters bowel function in patients with irritable bowel syndrome if they are positive for the HLA-DQ2 or HLA-DQ8 gene but do not have celiac disease.
  6. Just because you have the HLA-DQ2 or HLA-DQ8 genes, it does not mean you have celiac disease.
  7. Celiac disease is seriously under diagnosed in men.
  8. There is not enough information to diagnose non celiac gluten sensitivity and no reliable information is available to determine how many people may be affected by this because screening is unknown as well.
  9. Small Intestinal Bacterial Overgrowth may be a problem in people who have similar symptoms as IBS or Celiac but aren’t diagnosed. There isn’t a lot of research on this but a hydrogen test is available. (Actually, this test is something I have at my house to take next week when I get back from the conference)
  10. A gluten-free diet should never be started prior to ruling out or being diagnosed with celiac disease.
  11. Doctors are still recommending a gluten challenge for people who have been gluten-free on their own merit or for other reasons and then need to be tested for celiac disease.
  12. If you have a first degree relative diagnosed with celiac disease, you should be tested.
  13. Support groups for children and adolescents are the best way to help them cope with their diagnosis. If you can’t find one, create one yourself. Sometimes we need to take these matters into our own hands in order to help the kids.
  14. Osteoporosis normalizes within 3 years of following a gluten-free diet of people with celiac disease.
  15. Failure to adhere to a gluten-free diet will cause continued bone density loss and contribute to osteoporosis.

The 4 out of 5 Signs Rule for having celiac disease – you should have 4 of 5 of these done in order to diagnosed celiac disease:

  1. Presence of signs and/or symptoms compatible with celiac disease
  2. Positive serology testing (TTG +/- EMA)
  3. Compatible HLA genes (DQ2 e/0 DQ8 positive)
  4. Positive internal biopsy with enteropathy (damage) typical of celiac disease
  5. Resolution of symptoms with a strict compliance with a gluten free diet

In total, my mind was filled with information and excitement to not only learn about celiac disease, but also to have safe foods to snack on and enjoy for 3 full days. Stay tuned for more information from tomorrow and Wednesday!

 

Celiac and Your Sex Life – Things to Consider…

Celiac and Sex – Tips to connect with your partner.
Celiac and Sex – Tips to connect with your partner.

Celiac and Your Sex Life – Things to Consider…

Today I recorded a podcast and discussed several issues regarding celiac disease and your sex life. It’s mature content but is not explicit. I don’t go into details about my own sex life, but I do offer tips from my own life to help you feel close to your partner again.

It’s something that many women struggle with and is not just a factor associated with celiac disease. However, having a chronic disease makes feeling close to people difficult because it involves trust and communication above and beyond any physical intimacy. This makes dating and finding a new partner extremely difficult. There are people out there that struggle with their current partner and feelings of guilt, frustration etc. when it comes to your sex life.

I talk about things to consider before rushing to celiac disease and gluten to blame for your lack of sexual desire.

There are tips on how to make it better for both of you and the importance of learning to compromise.

Hopefully, this podcast will allow you to think about the how’s and why’s of a slow sex drive and give you inspiration to try my tips to feel close to your partner without the negative feelings.

Enjoy!

Rebecca

P.S. I have a ton of podcasts covering a wide range of issues with celiac disease on BlogTalkRadio.com or you can find me on iTunes and subscribe so you never miss an episode!

P.S.S. I am also Andrew Cordova’s co-host of his GF Magazine Podcast!

Dear Diary: I Think I’m Having a Tri-Life Crisis!

It’s a late night on our second full day of vacation and I’m sitting on our balcony, in the peaceful darkness, listening to the crashing of the waves with the sweet sound of cicadas chirping in the background. There’s a lot on my mind and keeping me awake.

When I think about the last few years of my life, the memories are filled with highs and lows, which seem like a never-ending roller coaster. Many of you may also think of your life in this manner too! I guess part of life is dealing the ebbs and flows as they come and developing the skills necessary to stand tall during the times of adversity. I’m proud to say I’ve gone through a ton of stuff and am still smiling and pushing forward to this day.

My first book coming out this fall is a self-help memoir about using these negative events, the lows as I would call them, to help propel you to the next chapter of your life. Looking back on all of the adversity throughout my lifetime, I realize that each one of these moments were life lessons to be used for the future. Sometimes though, you just want things to be easy.

I don’t want life to be easy, because I think frankly that would be pretty boring.

But, as I sit on a beautiful vacation, with my wonderful husband, in tears over all the changes we have going on in our life it really makes me wonder.. Am I doing something wrong?

Major life changes typically provoke thoughts and conversations that you didn’t even expect. I’m struggling with my sense of identity once we move to Washington DC next month. Who will I be there? What will I do? How will I fill my days?

Of course I will worry about my business in Columbus and our house we can’t sell. I’m sure I will have health issues to address and aches and pains to mend. The first few months will be filled with getting things settled in our new place, exploring the new city and making new friends. But, what happens after that?

I have an exciting opportunity to be whoever I want to be in a new town with new friends and create our new life, so why is this so stressful? Is it because I have too many options or am I having an identity crisis?

A Tri-Life Crisis? (I am in my 30′s so this is the term I’ve coined for struggling with your identity 30 years into life)

I know. I know. That’s ridiculous. (or is it?)

I will figure things out but right now I have a lot of things going on pushing me into panic mode! Never one to sit still, I will find things to fill my time. In a few months, my posts will be exciting and provide you will my fun gluten-free finds in the new city and some new opportunity that I found through my innate ability to network and connect with people.

But, I still can’t shake that feeling. The feeling of being the new girl in town and answering the question, “So, what do you do?”

I’m usually great at making major decisions and horrible at the small ones like, “where should we go for dinner?” or “What movie should we see tonight?”

In the end, it will all work out but for this moment I find myself questioning everything.

Gluten-Free Sweet Potato Fries Recipe by Jennifer Fugo

Gluten Free Sweet Potato Fries
Gluten Free Sweet Potato Fries

Gluten-Free Sweet Potato Fries

Jennifer Fugo, CHC
Enjoying the roasted savory sweetness that makes up sweet potato fries isn’t a very difficult task to handle. I love them for any meal of the day and even the occasional snack!  Sweet potatoes are downright awesome for you and they can complement almost any meal perfectly.
Plus sweet potato fries are naturally gluten-free and better for you than traditional white potato fries.  As a result, they are perfect for a healthy, low-sugar, gluten-free and even paleo diet.  This recipe is one of many that’s approved for clients that do my Gluten-Free Sugar Cleanse.What makes my recipe different from others out there is that I use a variety of spicing combos.  I’ll share with you my five favorite options and each has no more  than 5 ingredients.  Make sure that the spices you choose are gluten-free (Frontier Natural Spices are always gluten-free) and have fun!
There are two tricks to cooking fries in your oven.  The first is to cut your ‘fries’ to about the same size.  Small fries will cook way too fast (and then burn) while the larger, beefy looking fries will stay soggy.  Do your best to keep them relatively the same.The second trick is to lay all the fries out in one layer.  Don’t pile them or they won’t cook correctly.Here’s the ‘thing’ with spicing… there’s no magic bullet for amounts of how much to use.  I like to make sure that everything is evenly coated with both oil and the spices.  I don’t worry so much about the salt because you can always add more salt to taste once they’re done baking.  Plus no sweet potato is ever the same size, so the amount of fries you’ll get will vary.  That’s why I’ll generally do about 1 tbsp of extra virgin olive oil (or coconut oil, if you can tolerate it) and then add a nice light coating of spice.  Combine them well.  If the fries aren’t evenly coated with oil, they’ll dry out and burn.  So add a bit more to the bowl and stir if needed.

Remember… you can always add more, but it’s difficult to take back too much spice.  I don’t say this to scare you off if you’re someone who needs an exact roadmap to follow for cooking, however even with an exact amount, you could still find the flavor overpowering.  That’s why I’ve taken photos (see above and click to enlarge the tray image) and you can get a sense from looking at them how yours should look!

Spicing Options

White Pepper & Sea Salt

Chili Powder & Sea Salt

Dried Rosemary & Sea Salt

Garlic powder, Black Pepper & Sea Salt

Smoked Paprika & Sea Salt

Gluten-Free Sweet Potato Fries

Sweet potato(s), peeled & cut into 3″ long sticks
Extra Virgin Olive Oil or Coconut Oil
Spices (pick from list above)

Pre-heat oven to 375 F.  Cover at least 1 baking sheet with foil (if you need more, then cover them as well since piling fries will not get you the results you’re hoping for).

Add your cut sweet potato fries into a mixing bowl.  Start by adding about 1 tbsp of oil.  Sprinkle a few pinches of salt and add a light, but even sprinkle of your spices of choice.  Combine well making sure that the sweet potatoes are coated (they will dry out if you don’t). If you feel that you want more spice, add a bit more and mix again.  Repeat this until everything is lightly coated to your desire.  (See my photo above for how much my fries were spiced before going in the oven)

Bake for 20 to 25 minutes and then flip fries over.  Bake for another 10 to 15 minutes until fries are nicely browned or are the consistency you like.  Keep in mind that you won’t get that crisp “out of the fryer” feel that regular processed white potato fries get.

Enjoy immediately!

Also, you can save them in the fridge, but they will be more soggy at that point if you don’t mind.

About Jennifer:

Jennifer Fugo is the founder of Gluten Free School, a website dedicated to teaching gluten-sensitive individuals commonsense, simple and powerful steps to get healthy.  She’s a certified Health Coach named a “Gluten Free Guru” by Philadelphia Magazine who co-hosts the popular “Gluten-Free Sugar Cleanse” that teaches gluten-free folks how to kick their sugar addiction, regain control of their diet and feel awesome again.

Jennifer is sought after speaker and expert for news contributions who has been featured on Yahoo! News, eHow, CNN, and Philadelphia Magazine.

Gluten and Dairy Free Ice Cream Sandwich Recipe Guest Post

Well, I’m off to Hilton Head on vacation and have some wonderful guest posts lined up for you this week while I’m gone. The first comes from Tiffany Hinton with her fabulous gluten and dairy free ice cream sandwiches!
Enjoy!

Gluten and Dairy Free Ice Cream Sandwich Recipe Guest Post

Tiffany Hinton bio 
Tiffany Hinton is a Super Mom, Business Owner, Best Selling Author, and Gluten-free lifestyle expert!  Tiffany started writing several years ago, while going through treatments for infertility. Tiffany learned in 2009 she was gluten intolerant along with being lactose intolerant, turning her life up side down. Not know where to start and pre-made gluten-free items being too pricey. She started to experiment and explore cooking and baking; still wanting family favors to eat. With research and practice Tiffany can now turn any desirable recipe into gluten and dairy free, without sacrificing the taste.

Do you remember those hot summer days as a child where an ice cream sandwich brought the taste of chocolate and cold ice cream in an easy to hold treat… This was the first time my girls got to experience this wonderful memory from my childhood. As a Mom with 2 little girls who have gluten allergies and one who can not have dairy, it is always an adventure.

Do you remember those hot summer days as a child where an ice cream sandwich brought the taste of chocolate and cold ice cream in an easy to hold treat…
This was the first time my girls got to experience this wonderful memory from my childhood. As a Mom with 2 little girls who have gluten allergies and one who can not have dairy, it is always an adventure.

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Nummy, Nummy and Franki’s new word tasty!  The repeated request for chocolate and I knew these were a huge hit.
To make your own you will need the Brownie Bite Recipe from Gluten Free Mom Certified and the Dairy Free Ice Cream from Summer Thyme.  (both are fabulous cookbooks of mine)
Here is a link to the Ice Cream Recipe
and a short video with instructions

Bye Bye Nuva Ring

Nuva Ring Advertisement
Nuva Ring Advertisement

Nuva Ring No More

This post is for all my female readers out there!

Since my diagnosis of Endometriosis and undergoing a laparoscopy in January 2013, I’ve struggled with managing my endometriosis without the help of any medicine. I’m finding that my cramps are unbearable for 2 days of the month and I’m spending a whole week miserable with PMS symptoms.

My doctor suggested I go back on birth control because that is shown to help symptoms of endometriosis. Before trying to have a baby in 2011, I’d been on the Nuva Ring for almost 9 years. I never had any problems with it and liked not having to worry about taking a pill each day.

I decided to go back on the Nuva Ring to help control my endo. Well, 1 month later and I’m throwing in the towel.

Let me tell you why…

I didn’t put 2 and 2 together until last week but I’m fairly certain all of the symptoms I’ve had for the past month relate directly to the Nuva Ring. Obviously, with all my other issues from food, these could be related to some new food intolerance but the timing of when I started using the ring and when the symptoms started is just too coincidental.

For 4 days after insertion, I suffered from migraines. I was on a trip with my mother and continually popped Excedrine to control the pain. I was nervous because I typically only get them for 1 day at a time. The fact that it didn’t go away scared me.

The day I took the ring out, I enjoyed another wonderful migraine and finally the heaviest day of my monthly cycle came with a bang and a migraine that sent me to urgent care to get a shots in my butt.  I’d never had a migraine in my right temple and it worried me that this one came with serious vomiting. I even had to do it outside of the urgent care with people walking by to go to the grocery store. Certainly, not one of my classiest moments. I despise vomiting.

One of the shots was a pain-killer and the other one was phenergen for nausea.

A few days before I took the ring out, I developed major anxiety and started having panic attacks for no reason. I spent a whole night crying in our kitchen over nothing and laying in bed with my husband sobbing. Eventually I started mumbling something about the word “gluten” and how much I was sick of hearing about it. I even pulled out some Buspar (anti-anxiety) from last year to help calm my nerves.

My usually normal complexion quickly filled with pimples and cysts on my face like a 14-year-old boy and I managed to gain 10 more pounds in just under 4 weeks. This puts my post celiac weight gain at 30 pounds instead of the 20 I already was frustrated with before going on the ring.

I’ve had the ring out for a week now and all of my anxiety is gone. No more panic attacks. I lost 3 pounds. My face is starting to heal and I hopefully am done with these headaches. I’m going to a new doctor in about 6 weeks so I’m going to track my symptoms and anything else that happens to see if they occur without being on the Ring.

It’s interesting there are also class action lawsuits on the Ring and CBS News even has an article about the potential fatal dangers of this drug. As with any drug, there are always risks but when they start piling up, that’s when maybe it’s needs a second look.

So, let’s recap –

In the first month of going on the Nuva Ring I had the following happen:

  1. 10 pound weight gain
  2. Major anxiety
  3. Panic Attacks
  4. Cysts and pimples all over my face
  5. Migraines
  6. Fatigue

I made an appointment with a new doctor in just a few weeks and decided to cease using the Nuva Ring. My biggest concern is wondering why this time around I’ve seen such negative side effects when prior experience showed my body responded very well to the Ring. Weird.

I’ll post my progress over the next few weeks and keep you updated after I go to my new doctor. I hope he will have some answers for me! But I would love to hear from you, if you are comfortable sharing…

Have you experienced anything like this with the Ring? 

How have you managed your Endometriosis?

A smiling and happy Rebecca