Revisiting Gluten
What? No Gluten?!
Good bye normal bread.
It is worth noting that prior to being poisoned by Sodium Lauryl Sulfate, my body did not react to gluten. After I detoxed from that poison, we noticed that my body would have the same reaction to wheat that it did to the generic hydrocortisone pills containing Sodium Lauryl Sulfate.
Therefore, I made the personal decision (at the suggestion of one of my specialists) to give up gluten on September 1st, 2013.
The Original Plan
I cried a lot in that appointment when my neurologist told me to give up gluten.
I actually had an endoscopy performed by a gastroenterologist. It came back “clean.” With that, he officially ruled out Celiac’s Disease.
But yet, something was still obviously wrong.
My neurologist was the one that suggested cutting out gluten. She said she had seen it numerous times where although Celiac’s Disease was ruled out, her patients still benefited from a gluten free diet.
She wanted me to try it. The original parameters of her experiment involved giving up gluten for six months with absolutely NO CHEATING, and then for us to revisit. She wanted to give my body a chance to heal.
The Original Results
This was a HARD lifestyle change to make. But it was worth it.
I felt such a night and day improvement after only one week that I promised myself I would never go back to eating bread again!
While I was excited, this was also a hard lifestyle change. There were many family recipes that were instantly rendered inedible to me. Additionally, food is such a social aspect of our culture. Do something good? Let us celebrate with cake! Meeting for lunch during work? I know the best pizza place! Traveling internationally? Oh don’t you know that “Bread is good! Eat more bread!”
BUT this difficult adjustment was worth it to me because of the amazing results it produced.
If you personally do not react to gluten, eat it! Enjoy it! Do not adopt this life-style change because you believe it is inherently “healthier.” It is not. Bread is not the enemy.
Some Early Slip-Ups
Rice is not always gluten free.
In 2014, well passed the initial six month mark, I clearly still reacted to gluten. There was the time in Korea where I glutened myself with their barley rice. Previously, I could tell within 20-30 minutes of accidentally eating gluten. This would result in me being down and out for anywhere from 3-10 hours.
I understand that a “gluten sensitivity” diagnosis is controversial. Many people claim that it does not exist. However, I can assure you I was not making up my symptoms. WHY would anyone fake unpleasant toilet sessions or such an intense brain fog that they are barely functional?
Revisiting Gluten
During the summer of 2017, I realized that I had accidentally purchased not gluten free frozen waffles (gluten free label inconsistency is a rant for another time). But here was the odd thing: I had already consumed half of the package. Additionally, I could not recall which days I had eaten the waffles and which days I had not. I accidentally ran a blind placebo trial on myself!
I did not quite know what to do with this new information. At the time, I was doing job interviews and preparing to relocate yet again. I did not have the bandwidth to revisit my overall sensitivity levels.
It is now 2019.
Recently, at a restaurant, I was served a salad with croutons on it. As I was at a meal with upper management, I did not want to cause a scene even though I clearly stated with my order “no croutons on the salad.” I figured I would just pick them off and deal with the consequences.
My body did not react.
The other night, someone left a slice of cheesecake at my house. The crust was obviously full of gluten. I figured it was late at night and I was going to sleep anyway. If I was knocked out for a few hours it would be ok. I ate the cheesecake.
My body did not react.
Most recently, I realized that I consumed an entire can of soup that contains wheat. Yes, I know that often soups contain wheat, but I thought I was purchasing another soup that was known to be gluten free. Look at how similar the packaging is! The one on the right is gluten free. The one on the left is not.
The soup on the right is gluten free. The soup on the left is not. Similar titles, similar packaging, on the exact same shelf in the exact same row.
I decided to eat it anyway, testing out my theory.
My body did not react.
Now What?
Frankly, I was unsure what to do with this new information.
Part of me wanted to celebrate and go out and eat all the pizza and doughnuts and pasta all at once! But most of me was extremely cautious.
Did I just fall into the trap of proving there is no such thing as gluten sensitive individuals?
No.
Gluten Sensitivity is a real condition.
In 2013, 2014, 2015, 2016, I did clearly react to gluten. I did need to stay away from it. Perhaps in 2019, I can reintroduce it to my diet. Perhaps after five years on the cortisol pump, eliminating an extremely toxic individual from my life, and adding joy in the form of a goofball, my body has healed enough to allow me the freedom to eat gluten.
After all, the original plan was to eliminate it for six months and then re-evaluate.
It has been six years, and I am ready to re-evaluate.
I am eating gluten again.
My first Krispy Kreme doughnut in over six years. More of this story soon.
Has anyone else experienced this? Please leave a comment! I would love to hear from y’all!
Michelle Barker
Wow, I’m feeling a lot of things reading this. Mostly envy. Also frustration that gluten sensitivity doesn’t really come with any clear answers. Just a somewhat sketchy diagnosis, that many people don’t take seriously.
You can probably relate. So often I’ve wondered– how in the heck did I develop a gluten sensitivity? Have I always had this? Did oral steroids do this to me? Do I have celiac or just a sensitivity? Why does my daughter have it too? She’s never taken steroids. Why do we have this? Of course I have theories, but since I couldn’t find a doctor to look into this, nor do I have the energy to push for more testing with all the other medical issues I have going on– I may never know why or how this happened to me.
The thought of eating gluten again is both a dream come true, and at the same time– terrifying. I don’t think I could bring myself to do it. It’s a little different for me. I notice symptoms in about 3-6 hours after ingesting gluten. First it’s fatigue, sensory sensitivity, these worsen. Then migraine headache, muscle and joint pain. There are mental effects too. I feel like I can’t bear to exist, I have to escape from this misery some how. Deep depression ensues. These symptoms intensify for the first 24 hours and I’m miserable for at least 3 days. By day 7 I’m back to normal. If these symptoms werent so difficult and long lasting, I’d probably be tempted to reintroduce gluten. But no, I’m terrified. I’ve put so much blood, sweat and tears into getting myself healthy. I’ve sacrificed so much, including some of my organs. So I cannot bring myself to eat something that might make me sick.
However, I was recently eating lunch with another GF friend and she asked me, if I could eat one gluten containing meal without consequence, what would it be? Without hesitation I said “The honey bbq whatachicken strip sandwich at Whataburger.” Lol!
Amber Nicole
I do hate that no clear diagnosis and so much gray area. I’m thankful that in my case we can look back and go, “You! You poisonous SLS destroyed my gut and gave me gluten sensitivity!” Both you and I thrive on knowing reasons behind things, well supported by research. There are still a few medical mysteries out there with me, and I’m trying to practice the grace of saying, “I don’t know why, and that is ok.”
I also hate how all of our symptoms are different, which leads people to claim that we’re making them up. No. WHY would I fake being sick? I have enough problems with actually being sick, I don’t want MORE attention on me!
I understand your terror at the thought of reintroducing gluten. It must have been a PAIN to trace back the 72 hours of misery to accidental bread. You know what’s best for your body, and I admire everything that you’ve done to get yourself healthy.
PS – One of my first meals were chick-fil-a nuggets. The original nuggets, not the grilled.
Kim W
Did you do 23 & me? I know it’s possible to have markers and no symptoms but I was surprised that mine said “likely” gluten intolerate. I’ve past any celiac disease I’ve ever had and I have terrible stomach problems. It’s never gotten better with any treatment, pump included. Just curious if you’ve looked at recent 23&me additions. As always your such an inspiration.
Amber Nicole
I haven’t looked at 23 & me. I’ve thought about it, but I’ve held off. And thank you 🙂 May you remain Clearly Alive and inspire others to do so as well!
Charlie Park
Hi Amber. I’ve also successfully reintroduced gluten (just sourdough bread so far) into my diet this year after 4 years off it. I did so before transitioning from tablets to the pump. Not sure why I’m not reacting now.
A couple of years ago, my gut health was assessed as being out of balance with no good bacteria and lots of yeast. I worked on getting it rebalanced with diet and probiotics. I wonder if this has helped.
Life is very much easier with bread.
Debbie C
I have a friend with a gluten intolerance. Like you, she started not reacting to gluten a year or.so ago. BUT…She did find eating too much sent her back in to intolerance.
She found the Italian flours and pasta from Europe are much easier to digest. Many discount stores like Tuesday morning and Trader Joe’s carry the Italian pasta. Some specialty food places carry low gluten 00 flour. 00 flour can be made in to homemade pizza dough and pasta. So yummy homemade too!
Those are some options if the gluten intolerance pops up again. Happy eating! 😉
Amber Nicole
I’ll be sure to keep that in mind! Thank you for sharing the tips 🙂
And that’s helpful to know that eating too much sent her back into intolerance. I’m still trying to find that balancing act of what my new eating habits should look like.
~ Amber