Cupcakes and WHAT!?!

I’m sure most people wouldn’t pair these two far fetched topics together. One of the most desirable things and one of the undesirable things. I get it, but my 25 years on this planet sure hasn’t been the typical cheeseburger and french fry combo so I am hear to talk about that. Don’t worry, there will be more talk on the sweet side of the pair and less about MoviPrep (some readers will understand that one.)

The look on people’s face when I said this would be the title of my blog certainly confirmed I tend to think outside the box. Some people might think it’s disgusting and not even bother to read any further. But the truth is, millions of people are affected by digestive health problems, and millions of people like cupcakes. Who says that can’t be the same person? I certainly meet the criteria.

I have spent so much time reading other peoples helpful tips and tricks for various health issues and I have decided to share my own experiences. Even though I am not a doctor, dietician, or health professional, I do have a story worth sharing, even if only one person finds this and it helps them.

Still intrigued? Here is my story:

Everyone who knows me could tell you a few basic things: I eat gluten free, I take pictures of my gluten free creations (well, I take a lot of pictures of a lot of things), I have a big place in my heart for South Africa, and a very strong desire to travel the rest of the world.

But this isn’t about being gluten free. This will be about life AFTER my Celiac Disease diagnosis.

I was recently diagnosed with SIBO and IBS. (More on that in a minute)

I know it’s not a glamorous topic. It’s not even a topic people like to talk about but after doing a lot of research trying to understand it myself, I see that so many people are affected and just as confused as I am.

According to Mark Pimental, Director of the GI Motility Program and Director of the GI Motility Laboratory at Ceders Sinai,

“There are an estimated fifty million people in the US who suffer with chronic IBS. [His] team found that 78 percent of patients with IBS had SIBO.”

Many of them are reaching out to the internet for support.

Still have no idea what I am talking about?

About 8 years ago was the beginning of doctor’s office visits becoming a regular thing for me. Like many people have experienced, you don’t just go to the doctor and learn you have Celiac Disease, a gluten allergy, food intolerance, or any digestive disorder for that matter. Unfortunately, it took years of misdiagnoses and what seemed to be a growing list of other health issues, to finally realize what was the cause of everything. Food. Flash forward to today and I have since learned that Celiac Disease doesn’t only mean eating gluten free, but it triggered SIBO (Small Intestine Bacteria Overgrowth) which causes IBS (Irritable Bowel Syndrome). Treatable, but not curable.

Back in 2007, not many people knew what gluten free was. None of my friends, family, or any waitress in any restaurant. I was baking a lot and thought it would be so cool (but farfetched) to have a gluten free bakery. Now, I have been to more gluten free bakeries than I can count on all fingers and toes (even one in South Africa!) It started popping up everywhere – grocery stores and restaurants labeling items to cater to this emerging market. Good for the millions of people suffering and looking for relief but unfortunate that so many people are getting added to this category, and what I predict to be even further categories based on my experience.
I was treated for numerous issues ranging from severe vitamin deficiencies to Candida to Acid Reflux to H Pylori – all of which have brought me here.  I had a few years of feeling pretty good but then recently it got to the point where my stomach was so distended and uncomfortable, I was in pain, pale, shaky, tired, sick to my stomach constantly, and not functioning the way a 25 year old should. I finally went back to the doctor for what would be another 5 months of testing and all kinds of potential issues according to the numerous tests. (and there were A LOT – endoscopies, colonoscopy, CT scan with and without contrast, MRI with and without contrast, blood tests, blood tests, and MORE bloodtests, and even an ambulance ride with some extra stories for the books.)
Liver problem? Kidney function? Autoimmune Disease?
I’ve learned all too well that it takes a lot of testing to rule the major issues out and point the specialists in the right direction but I am very lucky to be under the care of some of the best doctor’s in the world at Ceders Sanai in Beverly Hills.
It’s been a frustrating journey to say the least. Waiting for doctor’s appointments, waiting for insurance to approve medications, waiting for the diagnosis, going through procedures, prepping for procedures (and it is true, it is the worst part), having good days and bad days and trying to not let it interfere with every day life.
And then you have the people who say food can’t possibly be causing this harm to your body. “Why don’t people in third world countries have food allergies?” “It’s all a big scam” “Those high maintenance Americans with too much money to spend on doctor’s”
I have heard it all.
Maybe that’s what makes me so passionate about sharing my experiences and spreading awareness.
After years talking to doctors, hours spent online reading, my fair share of medical bills, and a passport full of stamps and visas, I feel the need to put it all out there:
The food we eat in America is processed, poisonous, and modified so much that it is wreaking havoc on our bodies. (Some people probably just rolled their eyes..) After spending time in several other countries and seeing how they eat, feel, and live, it starts to make sense. It’s natural, unprocessed, and preservative free. Is being TOO industrialized working against us?!
I found a very interesting statement by Dr. Paolo Lionetti, a pediatric doctor discussing food issues in foreign countries.  “A place where you can die [from] infectious diseases, but you don’t get allergy, obesity, asthma, inflammatory bowel disease, [or] autoimmune disease.” You ask yourself, how can that be?
I’ll leave it at that for now since my focus here isn’t to address the bad but instead learn about how to make it better, and how to continue to eat cupcakes of course.

Flash Forward

April 1, 2014 – I get the results from my most recent procedure, the PillCam. (Amazing technology to see inside all 21 feet of your small intestines and create a time-lapse video.) I felt like no matter what my diagnosis was, if it had to do with a diet change, I had it down. I’ve spent years reading food labels and learning about where secret ingredients like to hide.
Then I heard the words “You have SIBO and need to take this medication and follow a low FODMAP diet”
What?
“Small Intestine Bacterial Overgrowth”
Ok..

“FODMAP – Fermentable Oligo-Di-Monosaccharides and Polyols”

What?

English translation: certain fruits, vegetables, dairy products, artificial sweeteners, and even teas. Something about different levels of fructose, lactose, fructans, and a few other things I thought were only related to diabetics who had to watch blood sugar. Now I have to not just read ingredient lists, but learn how these food are chemically broken down inside the digestive track?! I’ve certainly never looked at an apple and thought to myself “that sure has a lot of fructose in it” or a clove of garlic and said “too many fructans for me!”

When I first went through the initial diagnosis of Celiac Disease, I spent several hours on the internet to seek tips on this new lifestyle. Today, several years later, I found myself back in that spot, but this time typing in “What is SIBO” and “What are FODMAPs”

Well, I see that I am not alone on this topic.. I’m seeing it all over Google, Pinterest, even hashtags on Instagram (#fodmap – 7,000 posts?!) In general, we are becoming a more health conscious society and people are starting to pay more attention to what they are eating and how it affects our body, maybe because it’s the only one we get.

Today I start another chapter of learning, experimenting, and sharing. Everything from food, yoga, acupuncture and any other successes and failures that are about to come my way. I love trying new restaurants and bakeries, creating new recipes, and planning my next big getaway, so I will use this blog as a source to channel all of it.

Additionally, I’ve always found that giving back is not only extremely rewarding but also very therapeutic. For one thing, it quickly reminds you to put life into perspective, which we all need at some point. No amount of medicine makes me feel better than I do when someone says they tried one of my recipes and loved it or I get to take someone to a newly found sandwich shop in Los Angeles with the best gluten free bed they’ve ever had. I go through my pictures of being with the amazing people in South Africa and it also makes me so happy knowing that I have friends all over the world who love that here in America we get these huge platforms. Most of the world will never experience the opportunities, health, and knowledge that we are so fortunate to have. Sure, I have had my fair share of obstacles but looking at everything as a whole, life has been pretty incredible to me. Each hurdle I face opens my eyes and gives me the motivation to help others grow into the best they can be. If I didn’t have these difficulties, I don’t think I would be the person I am today.

Putting all of this out there for the world to read about was a decision I made after a lot of consideration but if I have the ability to help someone who loves to travel, try new foods, or has a similar health situation, I have nothing to lose.

Feel free to contact me if you have anything to add or need any advice on the previously mentioned topics!

And to leave with some good news..

A glass of red wine with brie cheese is low fodmap.

Cheers!

Some articles I found to be extremely helpful (and partially biased to since Ceders Sanai is so revolutionary on this topic):

http://digestivehealthinstitute.org/2012/09/18/antibiotics-for-my-ibs/

http://stanfordhospital.org/digestivehealth/nutrition/DH-Low-FODMAP-Diet-Handout.pdf

http://www.gidoctor.net/diet-ibs-sibo.php

http://fodmapliving.com/sample-page/

 

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5 thoughts on “Cupcakes and WHAT!?!

  1. i was just recently diagnosed with SIBO, finished a 7 day course of antiobiotic, was feeling a little better on it, the bloating was so bad i looked several months pregnant, and cramping, A few days later i still feel awful even worse, heartburn and real bad stomach cramping, could it be from starting probiotics? its very confusing and overwhelming as to which diet to follow as I also have hashimtos. i read about the SCD, FODMOP, diet for Hashimotos, etc. I cant tell what foods bother me and Im at a loss of where to start, please help!!!

  2. Sarah, your story is similar to mine. However, I am nearly 3 times your age. It was only recently that I discovered the FODMOP plan for healing. It took many years for a doctor to label my problem, IBS. I do not have Celiac. But the condition acts so like a Celiac problem that I have followed a gluetin free diet. However, I now monitor those polyols more carefully. At the moment, I am doing well. I wonder if you would share with me the name of the red wine you drink. I do not drink wine for fear it may trigger an episode. I, unfortunately, had 2 recent years of episode after episode loosing 7 lb. I am trying to keep my weight at 100 lbs. I recently found the Stanford info. It is great. Also so happy to find out that there are cheeses to eat. YUMMY!

    • Hi Carol,
      So sorry to hear you’ve been through this too. I do not drink a lot of any type of alcohol however I don’t seem to have an issue with one glass of wine every once in awhile. One of my favorites that is easy to find is a Malbec called Cantena from Argentina. It runs about $15 a bottle. Malbec is usually my go to since I enjoy a medium bodied type of wine. Enjoy and feel better!

  3. Thank you for sharing your story. After years of misdiagnoses (one doctor even told me I had an eating disorder), finally figuring out I had Celiac’s was almost a relief! It didn’t solve everything though, and I think I might ask my dict or about additional changes that might be necessary.

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