Remembering How I Got Here

This month is Thyroid Awareness Month.  It’s important for me to remember because 3 years ago this month, I was diagnosed with hypothyroidism.   A year later I began digging into the connection between gluten and thyroid functioning.

After all the reading I did, I was convinced enough to go on a gluten-free trial.  I should have been tested first, but hindsight is 20/20.

I have been gluten-free for nearly 2 years now.  I have been medication free for 2 1/2 years.  I have not used supplements to help support my thyroid for 1 1/2 years.

My hypothyroid diagnosis led me to make the following changes in order to rid my world of as many thyroid disruptors as possible:

• Go back to making my own personal care products
• Make my own all natural cleaners
• Switch to non-fluoride toothpaste
• Use a water filter (I use Zero)
• Go off the pill
• Change to a whole foods diet

Some of my hypothyroid symptoms that have resolved on a gluten-free diet:

• Migraines (daily at one point in my life)
• IBS
• Heart palpitations/chest pains
• Brain fog/inability to concentrate and focus
• Difficulty remembering anything (former co-worker once told me my memory was like a filing cabinet)
• Wild and unpredictable mood swings (not to mention getting angry way too easily)
• Idiopathic neuropathy
• Fatigue (extreme fatigue and not just being tired after a long day)
• Low body temperature
• Low blood pressure
• Hair loss
• Weight gain/inability to lose weight even with lots of exercise

These are the big ones.  There were others, too.  The only symptom I still have is the intolerance to cold temperatures.  My feet and hands get cold really fast and then the rest of me can’t tolerate the cold like I used to.  To me, it always feels 10 to 20 degrees colder than it really is, especially in the Winter.

When I was diagnosed with hypothyroidism and started learning about the symptoms over the first few months, I realized that this was something I had my whole life.  Migraines I chalked up to genetics because my dad has them, too.  I always had stomach issues (I’m pretty sure my mother thought I was just playing sick) and when I moved to Kentucky the stomach issues grew to include my entire intestinal tract.

Now, that I know this is all thanks to gluten, I wonder what my life would have been like had it been discovered earlier.  If you are reading this because you have hypothyroidism, too, but have never been tested or told it could be due to gluten sensitivity/Celiac, start talking to your doctor.  40 % of people with thyroid dysfunction have gluten sensitivity or Celiac.  That’s almost HALF people!

Some other things that can lead you in the direction of being tested other than thyroid dysfunction (and the symptoms I’ve already mentioned):

• Other food allergies/sensitivities
• Diagnosis of Sjogren’s or other autoimmune disorders
• Family history of colon cancer
• Osteoarthritis/rheumatoid arthritis
• Diabetes
• Gall bladder issues
• Diagnosis of Autism, ADHD/ADD, Depression or Bipolar
• Eczema, Rosacea and other skin disorders
• Osteoporosis
• Anemia/iron deficiency/B vitamins deficiency/vitamin D deficiency

I’m sure I missed some, but my awesome friend, Shirley, has a great tip sheet you can check out on her blog, gluten-free easily.

The sooner a proper diagnosis is made, the better the quality of life.  In the case of children, the better their chances for developing without delays.  I urge anyone who hasn’t gotten to the root of their problems and is still suffering needlessly to get tested if anything listed sounds like you.  If you have thyroid dysfunction and medication isn’t working for you, I urge you to get tested.  I was one of you.  If you went symptom by symptom while I was on Synthroid, some of them seemed resolved.  However, I was feeling worse overall.  The fatigue worsened and it was a struggle to get out of bed for work.

There is hope.  There is life after a diagnosis.  There is quality of life with the right diagnosis and following the right treatment.  For gluten sensitivity and Celiac, the only treatment is a gluten-free diet.  No pills required.  Only enjoying the rest of your life one day at a time.

 

An Open Letter to Meghan Casserly

Dear Ms. Casserly,

I am appalled at your recent post, What We’re (Not) Eating: A potential Danger of Gluten-Free.  I find it highly irresponsible to portray the gluten-free diet as “restrictive” and a “danger” even if your intent was to shed light on those who are using it as a cover for an eating disorder.   Being on a gluten-free diet because it causes ill-health and using a diagnosis to continue a destructive pattern of anorexia or bulemia are two totally different things.   I know the seriousness of eating disorders.  I have a degree in Psychology and had the fortune to learn from a professor who is a contributor to the DSM specifically on eating disorders.  Eating disorders are no joke.  Neither is having to eat gluten-free because it has caused numerous health problems throughout your life.

I suffered with migraines my entire life.  Something I resigned myself to living with for the rest of my days.  I was even tested for Lupus after the migraines became daily occurrences in 1998.  I started having vertigo spells in college.  Chest pains and heart palpitations started after college and stumped doctors.  I was diagnosed with IBS in 2000 after repeated testing turned up nothing.  Then, in 2009, I was diagnosed with Hypothyroidism, Anemia, Iron Deficiency, and Vitamin D Deficiency when I found myself fatigued every single day.  I worked 15 hours a week and I still crawled into bed when I got home from work and I stayed there until I absolutely had to get up.  After starting Synthroid, feet and leg pain started and my fatigue was worse.  Thankfully, my Naturopath connected the decline to the Synthroid and I was able to get off the Synthroid, on supplements and start improving.  However, I still wasn’t all better.  Spending a day at Disneyland with my best friend and her family wiped me out.  Doctors told me to get more exercise to improve my energy, yet more exercise just made it worse.

Finally, I went off gluten after researching the connection between gluten and chronic illnesses like Hypothyroidism.  I did it a little backwards, I know.  But after so much testing, if taking a simple protein out of my diet would make me better, I was willing to do it rather than go through more invasive testing.  Besides, I was already eating whole foods.  A diet where a lot of gluten was already naturally removed.  A diet that may look restrictive from an American perspective because I wasn’t eating packaged or processed foods with the exception of sprouted grain breads/buns and whole wheat pasta.  I wasn’t deprived at all.

Just six weeks after being gluten-free, I had only one symptom of my Hypothyroidism still sticking around.  Cold hands and feet/getting colder faster than others.  No vertigo.  No migraines.  No chest pain.  No heart palpitations.  No nothing.  I felt better than ever.  I actually gained health I never had through removing gluten from my diet.

This is a serious diet and too often, mainstream media demonizes the diet because some people are using it as a fad.  Now you have demonized it because some are using it as a cover for eating disorders.  This only serves to misinform the general public, most of whom have no idea what gluten is, what it is in, and why some people have to remove it from their diet.  This is why the “general public has come to see [gluten] as bad.”  The gluten-free community is NOT happy when anyone speaks out against this necessary diet for those of us who cannot tolerate even a crumb of gluten.  Quite frankly, you pissed me off.

In trying to make your point, you used the following quote from a site:

“Hi all. I wanted to share my secret with all of you. I told everyone I was going to the Dr. because I was having stomach issues. I never went and then a week l8r I told everyone that it was suspected that I was gluten intolerant. It’s extremely common and Gluten is in EVERYTHING. It’s in almost all salad dressings, it’s in most marinades, soy sauce, breads, noodles, beer, oatmeal, almost All cereals just everything. You can’t eat out because you can get glutened through cross contamination as well. You can’t eat anything at fast food places except salad. Even Mc D’s chicken on salad has gluten. My sister has it and she lost a bunch of weight because there is nothing she can eat and it’s just such a common allergy no one 2nd guesses me. Hope u guys are all well and good luck!”

And you ended your post with:

“What’s left to eat?

Next to nothing. And for some, that may be exactly the point.”

Yes, gluten is in a lot of salad dressings, marinades, soy sauces, non gluten-free breads, some noodles, non gluten-free beer, non-certified gluten-free oats, most cereals.  But it is most certainly not in “EVERYTHING.”  Eating out isn’t impossible because of cross-contact.  Many of us eat out.  Some fast food places have more than just salad options that are gluten-free.  What’s left to eat?  Next to nothing?  You are so wrong.

Fact #1: The only restriction on a gluten-free diet is no gluten.  This is only as “highly restrictive” as you perceive it to be.

Fact #2: Fruits and vegetables, which are found in abundance in grocery stores and farmers markets are gluten-free.

Fact #3: Fish, meat, and poultry (also in abundance) are gluten-free (as long as your local grocer isn’t padding their ground meat with flour)

Fact #4: Cheese, milk, milk alternatives, and most dairy are gluten-free.

Fact #5: Nuts and seeds are gluten-free

Fact #6: There are more gluten-free grains than gluten-full grains.

Fact #7: Many restaurants (especially chains) have gluten-free menus now and do everything they can to eliminate cross-contact in the kitchen.  Most restaurants that do not have gf menus will work with you in order to proved a gf meal if you take the time to explain your needs.  Also, there are many ethnic foods that are naturally gluten-free.

Fact #8: There are still no labeling standards for foods which may or may not contain gluten because the FDA still has not completed them.  This would make buying packaged foods, personal care products, and medications easier for those of us who have to be gluten-free.

Fact #9: There is more gluten in today’s crops of gluten-full grains than there were hundreds of years ago and our bodies weren’t meant to process as much gluten as we are exposed to today.

While your intent was one thing, it came across as completely different to those of us who live gluten-free for health/medical reasons.  You could have chosen a title that was more about eating disorders than the eating gluten-free.  You could have, you could have, you could have.  Yet, you didn’t.  Now you have the ire of an entire community of people because of how you portrayed a diet that is life saving to us.  Yes, life saving.  I felt I was at death’s door a little over 2 years ago.  Now, I have no need for thyroid medications or supplements.  All my tests are within normal limits with no use of meds or supplements by simply removing one little protein.

So what’s left to eat now?

A whole hell of a lot.  Point taken?

Weight

A few weeks before diagnosed with hypothyroidism at my heaviest, 155

We have an obsession with weight.  There are disorders in the DSM (Diagnostic and Statistics Manual) dedicated to weight disorders.  There are chronic medical conditions caused by obesity.  We go on fad diet after fad diet to lose weight.  We load up on protein to gain muscle weight and mass.

I have OCD tendencies.  I will focus on numbers and counting at times, but not everything.  When I’ve gained weight in the past, I will focus on those numbers on the scale.  I would weigh myself and then beat myself up over not losing anything or gaining.  It was all about the numbers.

What I’ve learned in the last 2 years is that while the numbers do matter in the long run, they really don’t matter as far as regaining your health.

The last 2 years I’ve spent focusing on my health and not the numbers that pop up on the scale when I step on it because I am aware of my obsession and compulsion with numbers and counting.  Shifting my focus has made all the difference in my change.  Focusing on my overall health and living healthier gave me the side benefit of a slow weight loss without trying.  Slow weight loss is more beneficial to helping you keep off the weight than rapid weight loss.

I’ve lost 21 pounds in the last year and a half since I started making significant changes to improve my overall health.   There is still more I’d like to lose.  At least 9 more pounds.   That will come as my health keeps changing for the better.   I have the patience to let it come as it will.