Hi Friends! Some of you already know about my health story, but I figured I’d make it official and document it here for anyone to read. It’s a long story over a long period of time and although I thought I had all of the answers, I’m realizing that this story continues to develop over time. Hopefully if you read this story and have questions about the things you’re going through it will help shine some light. Before I dive into my decade long story, I wanted to share a new blog topic that I will be sharing pretty regularly, but even before that I should give you a couple tidbits of information:
- “Celiac disease is an autoimmune disease in which eating foods that contain the protein gluten—found in wheat, barley, and rye—causes damage to your small intestine. It has a wide range of potential symptoms. People who have untreated celiac disease often cannot absorb nutrients from their food, and this can lead to serious health complications, such as malnutrition, osteoporosis, infertility, and even cancer. Fortunately, the damage caused by celiac disease often can be reversed once you’ve been diagnosed and begin following a gluten-free diet, which is the only current treatment for the condition.” [Source: Verywell Health online article]
- Symptoms include, but are not limited to: Diarrhea and/or constipation (sometimes alternating), Bloating, Abdominal pain, Fatigue, Headaches (including migraines), Skin conditions (including the so-called “gluten rash” dermatitis herpetiformis), Anxiety, Depression, etc.
- “Hypothyroidism is a condition in which the thyroid gland is not able to produce enough thyroid hormone. Since the main purpose of thyroid hormone is to “run the body’s metabolism,” it is understandable that people with this condition will have symptoms associated with a slow metabolism.” [Source: Endocrine Web online article]
- Symptoms include, but are not limited to: Fatigue, Weakness, Weight gain or increased difficulty losing weight, Coarse dry hair, Dry rough pale skin, Hair loss, Cold intolerance (you can’t tolerate cold temperatures like those around you), Muscle cramps and frequent muscle aches, Constipation, Depression, Irritability, Memory loss, Abnormal menstrual cycles, Decreased libido, etc.
THE FOXY KAT’S GLUTEN FREE DIARY
Since I’ve had at least a 10-year relationship with gluten issues, I figured it’s a big enough part of my life that I should share! My Gluten Free Diary will be focused on more informational and knowledge-based findings through this new journey of mine. There’s a lot that goes into it and it’s a lot to remember. Even if you don’t suffer from celiac disease, there will still be some great tips that anyone can incorporate into their own lifestyle if they truly want to. Some of the most impactful findings I’ve learned this far are:
- Gluten Contamination at Restaurants or Home – A good friend of mine, who also suffers from celiac’s disease, shared a story of how she went to Barros pizza regularly for a personal gluten free pizza. Shortly after eating this pizza that she’s had many times before, she became violently ill with gluten flu (vomiting, fever, skin symptoms, constipation, insomnia/brain fog, etc.) She was out of commission for over 24-hours and learned that unless you tell the restaurant that you have a gluten allergy, they often times will not clear off the counters, oven, prep space, etc. for a gluten free order. She has also given herself gluten flu by using the toaster oven at her house after her non-gluten free family members used it. Moral of the story is that it only takes trace amounts of gluten to impact you. If you’re trying to get better or figure out if you have a reaction, why allow gluten to sneak in and mess everything up?! Think about the next time you get a burger, remove the bun and eat the rest – you’re not doing yourself any favors!
- Gluten Free Foods Aren’t Always Gluten Free – Gluten is found in foods made with wheat, barley and rye. Technically french fries are made by potatoes and those are gluten free. What can make your french fries unsafe is the oil that is used to fry them. Typically oils don’t contain gluten, but if other foods were fried in the same oil it would render that oil unsafe for your fries. Same goes for foods processed in a facility that also processes items containing wheat. For example, chocolate should be gluten free based on the ingredients, but some chocolate bars are processed in a facility that renders them unsafe. By law “the FDA defines “gluten-free” foods as those containing less than 20 parts per million (ppm) of gluten” (Source: Verywell online article.) That number in the United States is a little higher than other countries, so that’s something to keep in mind. Plus, labels are voluntary, not mandatory.
- If It Touches Your Skin It Should Be Gluten Free – I hate to be the bearer of bad news, but the lotion you’re putting on your body or the body wash you use every day could be impacting you negatively too. There are so many bath and body products that contain gluten, fillers, additives or fragrances that can have bad reactions. I’ve been realizing this more recently with fragrances, and will be slowly switching out my beauty products to be gluten free as well. Same goes for cleaning supplies, detergents, etc. Most importantly lipsticks and Chapstick’s since they are easily ingestible.
- Not All Restaurants Are Well Educated – The first week I found out, I had the best experiences at Chipotle, In N Out, and The Keg. They took caution when preparing my food, they either had a GF menu, markings or were knowledgeable about what I can/can’t have and how it’s prepared at their restaurant. However, the past couple of days I learned that Starbucks is not super gluten friendly and neither is the AMC dine-in theater. I’m not able to eat any of their packaged foods (even if they don’t technically have items containing gluten in them) because they don’t know how or where they were processed. Specifically to Starbucks, I learned that the shakers are washed out, but not sanitized, so if I want to order a drink I need to request for the shakers to be sanitized first in case there was a shaker with caramel or sweeteners (which can contain gluten.) Another Starbucks location said that they never add caramel or sweeteners to the shakers and only to your actual drink, so hopefully that is true at all locations. At the movie theater, even the salads and popcorn are unsafe because they can’t guarantee that it was prepped in a safe environment since gluten could touch something that touches it. Bummer! Moral of the story here is to always do your research beforehand, and to plan for your own food just in case.
- Bloat Is A Real Thing – Just since going totally gluten free for a week and a half ago, I’ve lost over 5 pounds. Technically this isn’t a weight loss journey, but hey if I lose a couple of pounds along the way, great! My clothes fit the same and I look the same, so what that tells me is that I lost water retention and bloat, which is probably why I gained so much weight all those years ago in the first place!
I realize my health story (below) is a long one and I appreciate you making it this far. Moving forward I will be breaking out various gluten-free themes to be quick and easily digestible information (pun intended!) Keep an eye out for these posts to go live on Gluten Free Fridays! And please comment or email me with any questions, comments, or recommendations. Thank you all for your support.
MY HEALTH STORY - PART I
Monday, July 8, 2019 at 5pm I found out from my doctor that I have celiac disease. The crazy part is that deep down I’ve probably known for a long time. I remember meeting someone during my freshman year of college in 2003 who first explained to me what celiac disease is, how she found out and how she combats it. I thought it was the craziest sounding thing, but immediately had the thought of whether or not I could have it too?
Fast forward almost six years later, in spring 2009, my best friend’s uncle suddenly passed away from colon cancer. He was so healthy! It took everyone by shock and although he only came into my life briefly it definitely shook me. I read about the things that we consume on a daily basis and their lasting impacts. I felt as though I needed to flush my insides in order to have that peace of mind. Kind of a strange reaction to the news and who knows maybe it was an expression of grief or a way to deal with other stressors that I was going through at that time. Either way, I learned about this 14-day fruits and vegetable cleanse by Dr. Ben Kim. At completion, I felt amazing and as long as I was mindful of my calorie consumption (aka not allowing myself to get hangry), I had never felt better, so I continued a modified version of the cleanse for a few months. My brain was so clear and my energy levels were off the charts. I was on my feet all day at work, running and spinning for fun, and preparing all of my meals. However, once my social life picked up again I slowly incorporated more healthy fats, fish and some diary, and of course alcohol. After moving back to Arizona from New York, I found it very difficult to continue this pescatarian and gluten-free lifestyle that I randomly fell into. I started adding chicken, wheat and processed foods back into my diet. I could definitely tell a difference from the sudden weight gain alone, but it was only a couple pounds and as long as I was working out and monitoring my eating habits I was able to lose the weight and figured it wasn’t a big deal.
Over the next year and a half, I found that I had no energy to do the things I loved, like working out. I shared “how I was feeling” with a dietician and she suggested that I eat a Mediterranean diet that is gluten free. The symptoms I was feeling sounded like a gluten intolerance to her. I figured I could try it, what would it hurt. I took her suggestions, started to feel a little better and had the energy to workout with a trainer. I found it extremely difficult to eat gluten free as no one knew what it was and a lot of people associated it with being “carb free” or a diet fad like the Atkins diet. Plus, since it wasn’t an actual allergy, many restaurants would guess and say something was gluten free because it was made from potatoes, which is not always the case. To make matters even worse there was only one gluten free vodka at the time, which was Choppin, and that was very hard to find during my prime happy hour and bar days. (Thank goodness Tito’s is a thing now!)
Over the next 6 months I kept feeling worse. My job was accelerating quickly and my social life was not slowing down at all. It got to a point where I was restricting my diet so much and trying to work out with the little energy that I had just to be able to fit into my clothes. There was a month where I traveled to a bachelorette party, a wedding, and attended a baby shower at home. So, I was eating healthy during the weeks, but trying to make the best decisions I could during my travels. I wasn’t necessarily eating gluten free, but I was bringing healthy snacks and cutting calories where I could. During that month I gained so much weight that I had to go up a dress size for another wedding that I was a bridesmaid for the next month. It was so bizarre, so depressing and really rocked my self-esteem. I had been working so hard, just turned 26, and didn’t understand why my body was “going to shit.” It prevented me from wanting to be around friends in social settings because even the thought of going to happy hour would result in the scale going up. Plus, all of the little energy I had was going towards work. I was dating a few people at the time but couldn’t allow myself to be fully present in those relationships, so I made the decision to “work on myself.” My mom noticed how unhappy I was and recommended that I go to this weight loss clinic that was highly recommended by friends and the local community. What else do you do when you gain 20 pounds in one month?!
Fall of 2011, I started going to this “clinic” in Ahwatukee. They questioned my need for signing up since they said that I “looked fine.” At the time I was about 40 years younger than their primary customer base, I was eating healthy and completed the workouts just fine. They kept pressing that weight is just a number and that as long as I’m making healthy choices, I’m fine. It wasn’t until they did multiple tests on me to find out that I wasn’t fine. On paper I had more similarities to their customer base than they originally thought. I was severely deficient in all vitamins and have an autoimmune disease in the form of hypothyroidism. But lucky for me, “thyroid disease is like the common cold.” Their words not mine. They gave me a magic thyroid pill and set me up with the HCG diet plan. I was literally injecting pregnancy hormones into my body via syringe and only eating 500 calories a day (about an apple or two and a few crackers.) They also gave me carb blocker pills so in case I am in a situation where I need to eat carbs I can take another magic pill that would simply flush it all out. I was so desperate for something to work that I went along with it. Crazy, right?!
At the end of 2011 and during these few months of dealing with this new “health plan”, I met and fell hard for this cute guy. I quickly realized that these restrictions were too much and the magic thyroid pill the “clinic” gave me actually was making me feel worse. I went to an endocrinologist and from simple blood work she was able to tell that the medicine was doing more harm than good. (If you’re familiar with how your thyroid works, there is T3, T4 and TSH. My T3 was not converting to T4, which is the only way to get T4, so instead of giving me more T4 the clinic was pumping me with an overabundance of T3. Whoops!) After switching my medicine up, I started feeling so much better, but was still not 100% better. (It actually would take 5 years to get my thyroid levels to better/normal and I definitely celebrated when I received the news from my endocrinologist with those blood work results!)
At the end of Summer 2012, my boyfriend, who I just bought a house with and had been looking at sparkley rings with, started reading up on hypothyroidism. He could tell that I was not feeling right. I would talk to him about my passion for living an active lifestyle, but how I lacked the energy to actually do the things I enjoyed. Plus, the limit did not exist for the numbers of hours I needed to get a full nights rest. I was super emotional, always cold, had digestion issues, the list goes on and on. I still can’t believe this is when Aaron fell in love with me, but he did and found this book called, “The Hypothyroidism Diet” by Dr. Kevin Dobrzynski. The author’s wife had thyroid cancer and dedicated his research to helping her. This book was a God-send. It opened my eyes to how greatly I was impacted by the things I was putting into my body. It changed my entire thought process on how to eat, what to eat, etc. I learned that people who suffer from hypo-thyroidism have a very difficult time absorbing proper vitamins and nutrients from food and even supplements too. (That explains why my levels weren’t changing after getting weekly vitamin injections from the “clinic” for months.) In the book it taught me to cook my vegetables au dente and what fruits and vegetables are the best for me. Did you know that strawberries are considered to be a goitrogenic food and actually should be monitored for people with thyroid disease. Who knew?! This story has a happy ending… I lost the 30 pounds I had accumulated, I began working out again, my brain was clearing up, and through the elimination diet that Dr. Kevin recommends I was able to know for sure how gluten and dairy make me feel, which is as you could have guessed not great.
MY HEALTH STORY - PART II
Over the next 7 years, I’ve had my 5-10 pounds of ups and downs and when I look back I can see that it was directly impacted by stress, new jobs, travel, convivence, etc. but I now know my body pretty well and know how to combat those things as long as I put in the time and effort. I’ve tried many times to make gluten free choices. Restaurants ask if it’s an allergy and I’d say no, it’s a preference. I would give up gluten and think that I could only eat salads, but after a while I’d get bored and eventually go back to a gluten full lifestyle. More so this past year (2019), I’ve started noticing how not great I feel. Nothing like 2011, but still not the best. One of my closest friends who is also my boss at work found out that she has celiacs last fall and having spent more time with her I’ve started thinking and wondering those what-if thoughts. A big red flag I’d been ignoring is that my sister has many food allergies that developed in her 30’s and lives a very restricted/eat at home lifestyle. (She’s probably had the allergies for longer, but started making some serious changes in her 30’s.)
This brings us to the end of the story, which is actually just the beginning…. Spring of 2019, I went in for my annual doctor’s appointment, not with my endocrinologist (who I’ve been seeing for 7 years and who worked extremely close with me over 5 years to even get me to an OK place with my thyroid disease), but my gynecologist (umm, what?) and I had a slight break down. I did not sleep the night before, which has started to become a regular occurrence. My brain was so fogged that I couldn’t even form words. She recommended that I get a blood test for celiac disease and get an ultrasound of my thyroid, both things are highly recommended if you have thyroid disease or a family history. She found that I was severely deficient in multiple vitamins (again) and prescribed me specific vitamins to help, along with spending 5-10 minutes outside in the sun for natural absorption of vitamin D and to start practicing circadian rhythm for help with sleep.
It took a few months for me to get my act together and my appointments scheduled, but after I did I went back on Monday, July 8, 2019. She informed me that my vitamin levels are all within range, as low as they can be, but they’re finally good – I’ll take it! She mentioned that I have a small cystic node on my thyroid, but it’s not something to be worried about. Then she dropped the celiac bomb on me saying that I tested for one of the genetic precursors. She explained that my anti-bodies are actually negative, which is a good thing (someone who has positive anti-bodies would have full blown celiac disease), so my case is not as severe. I don’t get violently ill like most people with celiacs do, but the doctor assured me that it’s just a matter of time. I figured she’d say to monitor the amount of gluten I eat and I’ll be on my way – wrong! She explained that there is no point in eating any gluten or risking contamination since no matter the amount I will continue to be “sick” for as long as I ingest in and continue to damage my intestines. Whoa! Okay, this is a new thought process for me. So, consuming gluten is no longer a choice. It’s the only option I have to live a healthy and happy life. If it ain’t broke why fix it, right? Wrong again! My doctor explained that I don’t want it to break. I know she’s right and I’m hopefully that this is the last piece in my “feeling good again” puzzle.
It’s been a little over a week and I’ve already learned a lot. I’ve shared the news with my fellow celiacs (Where my CELIACS at?!), my friends and family. I’ve even started saying, “hey, so I just found out that I have a gluten allergy… can I eat this?” at some of my favorite go-to eateries. It’s so funny the response I’ve received from people and how I’m impacted when I share the news. The people closest to me have had the reaction of, “Oh I’m sorry, but didn’t we already know this?” and the people who already live strict healthy lifestyles for funsies love telling me how pizza is now offered as gluten free (oh no f*cking way, you don’t say *eye roll*). Like I mentioned, my reaction to other people’s responses has been a bit “funny” to say the least. There are times when afterwards I’ll get emotional (never in front of anyone because, ew gross, tears), or I’ll get a sense of anger, sass, or savage-ness, when people try to brush it off like it’s no big deal or that it’s “manageable.” I know I’m not going to die (at least not directly from this), but please understand that the food I once turned to for convenience or maybe even emotionally I can no longer turn to. I get very hangry and you’re telling me that I might have to go for long periods of time without food unless I plan ahead of time? It’ll take time to wrap my mind around it and get the hang of it, but I know I’ll get there…
To close, hypothyroidism and celiac disease are manageable and livable conditions that many people experience everyday. I realize that my life is not ending, and if you are going through either of these – neither is yours! The frustrating part is (1) not feeling like you have a choice, (2) worrying about contamination happening at any moment, or (3) God forbid getting worse with age. At least these are my top three worries and at the end of the day it’s not even about the fact that I can never ever eat the foods again that I eat out of convenience or for emotional support . After getting pretty down about it, I realized that in the end I do have a choice and that choice is TO FEEL GOOD! It might take more work than your co-workers, your friends or even your family members. It might feel unfair at times, but the fact that you (and I) are taking positive strides to educate ourselves about these conditions (or any health issues for that matter) and trying to get better is extremely important for our future children, friends, dogs (The Foxy Pups only eat gluten and grain free!), co-workers, neighbors, etc. to live celiac disease or thyroid disease free!