No, I don’t have celiac—Going gluten free

Just in case you didn’t realize, I am not a doctor. What I am is a person who has been living with hypothyroidism for about 14 years. And quite frankly, was sick of feeling exhausted all the time. And the weight gain, anxiety, and overall brain fog. So I took my life in my own hands by researching and researching some more. Hopefully this will help you to try to find answers for yourself! And I think the first step is finding a doctor who won’t dismiss your concerns. And by first step.. unfortunately probably the hardest.

I mentioned back in June I believe that I planned on going gluten free in an attempt to feel better. Honestly, best decision I’ve made!

For years, I’ve been plagued with stomach issues. A few years ago, I had gone to the doctor numerous times to try to figure out what was going on. I was told to drink more water. I did, and nothing changed.

One doctor I finally went to, after telling him my family history, agreed to do a blood test for celiac. It came back negative. I just wanted to know what was going on with my body could actually be prevented in some way! But I did nothing. For years.

Last year, when I started feeling like my hypothyroid symptoms were getting worse, I went to my doctor yet again, and was told my numbers were fine. That’s when I found the Stop the Thyroid Madness website and Facebook group. They are a wealth of knowledge! Once I started taking both a T3 & T4 med (after finding a new doctor), I did begin to feel a little better, but the exhaustion, brain fog and stomach issues persisted. The doctor who prescribed my new thyroid medication also suggested the 21 Day Vegan kickstart. Which got me to thinking. After searching the internet, you might find yourself finding information about removing soy, dairy and gluten from your diet. Gluten kept popping up, so I searched and found this article.

As stated before, I went gluten free and it was hard to say definitively at first. Then I took two trips and didn’t stick to it. It was almost immediate regret. There was a lot of stomach pain and I struggled with exhaustion (even with enough sleep.)

It’s a tough road because I’ve had to go based on how I feel without a definitive test. I’ve had a person tell me it wasn’t necessary (gluten doesn’t affect thyroid!) and others who completely agree.

I just hope this information can help some!

3 Weeks post stem cells & the ARC of Onondaga Race

I can’t believe how talkative Colleen is. She’s constantly babbling, and it’s so amazing to hear all the different sounds she’s making.

Just the other day, I laid Colleen down for a nap. She threw her toy out, and in order to get it, she went to the opening and was trying to carefully get herself down with one arm extended to the floor. Why is this a big deal? Colleen has the safety sleeper because she just didn’t understand that she could fall out of her bed and hurt herself, so to see her processing the situation and not just going after it is remarkable.

Another thing? You know all those posts of the past where I was desperately trying to get Colleen’s stomach issues figured out? She was in constant pain from chronic constipation, and that was even after daily doses of miralax and senna. I was sick of giving her this stuff. Now, almost a month post stem cells, she has had 0 issues. How do you put to words the amount of relief that is?

This was after 1 treatment, and we will definitely be going back for more. We have not received her EEG results yet, so I will be bugging them again on Monday.

That brings me to the ARC race. The amount of support these past few months have been truly amazing. Every year, the ARC of Onondaga has their Dunkin Run Arc Race 5k and half marathon. The ARC serves the central New York area, providing services to people with developmental disabilities. They also pair runners from the communities with athlete with disabilities and they can run tandem. My friend, (and manager and amazing design mentor) Karanya, wanted to do this for Colleen.

I would have run, but I’m definitely no where near ready to run a half. (Maybe next year?!) Her and her friend, Rosemary, pushed Colleen tandem for the half. I think Colleen enjoyed herself and I was told she even came some motivational yells! 🙂

Before the race, when we first arrived, a little girl ran up to Colleen. She takes Colleen’s bus, and I was happy to learn that her brother was Hugo! Last year, we had a cerebral palsy awareness day at school because of the efforts of Hugo’s parents. It was great to meet them.

So here’s to next year. Feeling inspired by the running community and I’d love to tandem run further than a 5k. Better start practicing now!

Personal health: update!

Last month, I shared that I was going gluten free in an attempt to try to feel better and I thought it was time for an update.

I'm still going strong! I thought about adding gluten back in about 3 weeks into this health change, but after talking with a number of people, it seems like it should be a longer process.

Do I feel better? Eh.. that's debatable. There's days where I feel I have more energy, and there was a week straight where all I wanted to do was sleep, even after getting enough.

So the jury is still out, but I also haven't eliminated other possible thyroid triggers like milk. I have an appointment with my doctor next week. While I think she's helping, I also think my thyroid levels are no where close to being optimal yet.

This brings me to my weight! My work gym hired a full-time trainer and nutritionist a few months ago and just recently started a fat loss competition. Since scale hasn't budged in months, I asked and got a nutrition plan focusing on Macro nutrients. I'm on the second week, and now that I have a food scale, I think this is going to be a powerful tool in making sure that while my thyroid isn't optimal, at least my nutrition can be!

Haven't moved the scale much at weigh-ins, but I'm determined!

(In picture, I am 146.8)

Going gluten free.

As with most things I set out to do, I tend to be the queen of starting something, and not seeing it through to the finish. Like, at the beginning of the year when I tried the 21-day vegan kickstart to eliminate inflammatory foods, and try to help my hypothyroidism symptoms. It only lasted so long before I fell back in to my old habits, and here I am, six months later and having gained even more weight.

As easy as it is to say, “I have hypothyroidism! Weight loss is hard” Is that really all it is? Am I doing enough to help myself? Nope. Not even close. I am a part of a thyroid group who share their experiences in trying to get their thyroid optimal. I am not there yet, but something that I’ve seen over and over is people who have started to feel better after going gluten free. It doesn’t work for everyone, but it’s something I am willing to try. How else will I know? 

“The problem is that your immune system can mistake the thyroid for gluten, causing it to come under attack. When people think of gluten intolerance, they typically think of celiac disease (CD), but this is just one manifestation of gluten intolerance.” 

Source https://www.mindbodygreen.com/0-18316/this-is-what-gluten-can-do-to-your-thyroid-it-isnt-pretty.html

This is going to take some work, so I’ve been researching and pinning things to help. But starting today, this is something I’m going to try to see if it helps! 

Day 1: June 4, 2017

Weight: 148 

Symptoms: Even after full night’s sleep, still exhausted. Some days of feeling light-headed. Various stomach ailments, like bloating and pain. 

Do you have hypothyroidism and hashimotos? I’d love to hear if you’ve tried going gluten free and if it’s helped your symptoms! 

Special Olympics 

Last week, Colleen got to go to the special olympics with her school. It’s a very large event with many school districts attending. 

Of course, in true NY weather fashion, it has been in the 50’s and 60’s, but on Thursday, it was 90°. I knew I was going to have to send her with a lot of water.

She had three events; ball throw, assisted walk, and jumping! She placed 6th, 4th and 1st, respectively! So proud of her accomplishments. I came later in the morning from work, and knew from seeing her that it was way too hot out for her. Despite that, she did well, and drank a lot of water. I was thoroughly convinced that she was going to fall asleep on the bus ride back, but surprisingly, she did’t! But, she was so worn out and tired that she didn’t really care that  Anna and Elsa were there. 


I can’t wait til she gets to go next year! It was evident that they needed more pop-up tents, so we’ll have bring ours next year. 

I’m having a hard time believing that it’s already the end of May. Slow down, time! Colleen has a field trip to the zoo, then we’re just about at the end of the school year. 

Please, please, so down, time! 

The ups and downs of February

You know that feeling when you wake up, and you just know you’re coming down with something? This was me a few weeks ago; I was weak and tired. I was fighting headaches on and off, and it felt like I was barely fighting off a sore throat. I was also sure that I had a fever, but nothing ever came of it. This was Saturday-Monday. By that Friday, Colleen started running a fever. Nothing terribly high, but with how I felt, I thought with some Tylenol, she would be okay in a day or two. By Sunday, she still wasn’t eating. She woke with no fever, but I took her to the pediatrician just to be sure. (Thank goodness for weekend hours!) Her doctor ran a flu test, thinking it would be negative, but it came back positive. Then I felt guilty for not bringing her in sooner. her doctor felt like she should be given the Tamiflu, and I think it helped a lot. And not that I wanted Colleen to spend her school break sick, but I’m glad that she didn’t have to miss school.

 

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Frozen always makes Colleen happy!

 

She mostly eats her lunch in her class, and after the break, we were going to start having her go to the cafeteria. She had friends eat with her before, and I think she really thrives on having others around her. Her eating really suffered from this sickness, but she’s slowly eating more. Here’s to hoping tomorrow is an improvement!

Lastly, I started Couch 2 5k! I used to run track in high school. I loved sprinting but loathed long distance. I used to run more and want to make it a habit. More specifically, I want to not hate it. I want to be able to run a 5k and not feel like I’m dying. Plus, I want to run the Tough Mudder again. 🙂 #runninggoals!

Accountability Time

At this exact moment, I have had one pair of jeans that fit me okay. That was until this morning, where another pair of pants became the victim of the dreaded thigh rub wear and split when I sat down. *Insert tears here*  So, I now how two choices; buy new jeans or lose the weight I need to in order to fit back into my others. I do need new jeans regardless, but I am definitely going to lean more towards the weight loss side because, at this point, it is definitely needed.

At 5’0″, right now I weigh exactly 145. Nowhere near being happy at this weight, where at this time last year, I was closer to my low of 125.6.

That brings us to accountability time!

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This is me as of February 12, 2017. I started the 21 Day vegan jumpstart, so I was working on eliminating dairy, meat, and soy from my diet. My doctor said I likely have Hashimoto’s, so I was debating eliminating gluten. I haven’t been tested for Hashimoto’s, so that is my next step. And of course, this lead me to be overwhelmed with coming up with a new meal plan. There are plenty of things to eat, but I’m not the best in planning. And so the vegan jumpstart went out the window.

Today, I’m working on planning. I’ve written my doctor an email to see if I can get more definitive answers and I’m committed to finally feeling better, both in my own skin and with keeping my hypothyroidism in check!

Ups and Downs

So, it’s been a while and there’s been lots of changes here!

You know that bed? The elusive bed? We finally have it! We received a letter that it had been approved, and about a week later it showed up on our doorstep.

Of course I started putting it together as soon as I got off from work. It’s fairy easy, but my biggest challenge came when trying to get the mattress inside. It’s far easier said than done when there’s only one person and a small bedroom. But I did it, and Colleen loves it. 


After seeing the neurologist in Boston and in resin her keppra to the highest dose she could go, Colleen continued to have seizure episodes and small movements that I’m pretty sure are seizure activity. We are on week 3 of now decreasing her keppra dose and adding depakote sprinkles back in. She hasn’t had a seizure in over 3 weeks, but there have been a number of those little movements. She will get her levels drawn this week and see how she’s doing on it overall. 

Colleen started kindergarten this week and I’m a mix of being incredibly proud of her and a nervous, anxious mess. There was a small mishap in that am the wrong bus was initially sent. They sent one without a wheelchair lift. Slight miscommunication somewhere! But she’s doing well overwise. I was mostly nervous about how long of a day it was, but she’s eating well and we have the nap time figured out. I definitely think we’ll get the routine down. It was the cutest thing to see how excited she was when the bus came.


We’be been working on her walker more recently when we go to the store but Colleen made it very clear she wants to be independent. Well, just hold my hand instead of using her walked. It’s been a challenge to pick her up for the cart. She’s not heavy, but I have short arms. I’be been putting her in the cart sideways to help this. So, instead I tried her in the Caroline’s Cart. Both Target and Wegmans have them, so it’s very convenient to have adaptive equipment. Colleen, of course, love it. 


One thing I noticed was that now, a lot of people are curious when I walk by, cranking their head to get a look at who’s inside. Not completely sure how I feel about this yet. 

I’ll give a personal update next post. There’s been some changes that have been creating some anxiety, but hoping will be mostly resolved and I’ll have more answers.

Til next time!

Essential Oil–DigestZen

Before I start, I will say that this is my first experience with essential oils. I am not selling anything. This is my very own unbiased opinion.

I posted a while ago about my desperation to find relief for Colleen. Soon after, a friend posted about the essential oils she had used to help her children fall asleep. I was intrigued. Colleen is notorious for being exhausted, falling asleep but then then waking up a few hours later ready to go. 1 sample, an infuser and FaceBook group add later, I saw a post about this DigestZen; Far more intrigued with this! I went ahead and bought the bottle.

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After receiving, I mixed some with coconut oil in a small container so that I could apply it to her belly before bedtime. To put the change in perspective, Colleen’s teachers asked if her meds had changed because she seemed so much happier. The oil was the only thing that had changed. So now, before bed, I give her a homeopathic gas drop I found at Walgreens and rub some of the DigestZen on her belly. It’s been an amazing help! And yes, I do think it was 100% the oil. There have been a few nights in which should couldn’t burp after eating/drinking. Normally, this would result in her either being super fussy before she fell asleep, or she would wake up very unhappy. Now, if I’ve tried unsuccessfully to get her to burp, I give her gas drops and rub this in and she sleeps. (Which means I get to sleep, so it’s a definite win-win.) 🙂

DigestZen is a mix of ginger rhizome/root, peppermint plant, caraway seed, coriander seed, anise seed, tarragon plant and fennel. It is good for aromatic, topical or dietary use. I’ve been using this topically mixed with coconut oil.

Waiting game.

Hey! Did you notice something? After some internal debate, I finally bought http://www.timetobuildcastles.com ! Right now, it’s the domain name that forwards to here. I’m going to try to clean up my page and make it user friendly for my few followers. 😉

I used to say that I was an incredibly patient person. But that is very much in the past, and I’m often told that I just need to relax. And you know how when you say you need to work on something, it seems like you’re provided ample opportunity to do so? I’m (slowly) learning patience.

I have been trying to think back to how long it’s been since we started discussing it, and I absolutely hate the fact that it’s been well over 6 months. Before Christmas, Colleen’s therapist had requested a new script for the specific bed. I found out last week that they had yet to write it. Several phone calls later, I have the new one, but she is off of school this week, so we won’t see her therapist till Monday. I am frustrated.

Her wheelchair finally came in, but I have to update all of Colleen’s insurance information before we can get it. There’s always hurdles to battle over it seems. Hoping to get that sorted this week. We are also still waiting to hear about her Embrace watch. It was December when we found out she was approved to receive one. And I was supposed to be contacted with a code to check out the app and such. Still waiting.

As for health-related updates, I’m coming near the end of the Metro 42 challenge, you’d think I’d have my act together and be making consistent, healthy choices. Right? I had hit 127.6, and was incredibly happy with the results. Then the weekend happened. I tracked everything in MyFitnessPal to the best of by abilities, and to my horror, I’m up to 132 this morning. Calorie wise, I wasn’t too terrible, so I’m not sure if I’m retaining water or whats going on. After I hit under 130, I told myself that I didn’t want to see that number ever again. To say I’m disappointed in myself is an understatement. To top it off, I didn’t get a workout in yesterday when I easily could have. Weekends are the absolute worst in terms of choices, so I need to get better at that.

But, today is a new day, so back at it, and back to making healthy choices. Hopefully it is indeed just water weight (We did have hibachi from Ichiban for Valentine’s, and while it is amazing and delicious, I’m not sure it’s quite worth 4 Ibs. Maybe 2.) I’ve been wanting to ask my doctor, or anyone with hypothyroidism, if when they have higher amounts of sodium, they gain a lot. It seems like that happens with me.