Going Gluten-Free Changed My Life for the Better!

mint green typewriter with orange paper once upon a time

My journey.

Hey there, I’m Maureen. I like long walks in the park and Kenny G. Oh wait, wrong website. Anyway, I have Celiac Disease. August 2005 was the last time I ate gluten (well, knowingly at least). Unknowingly is another story that SO does not have a happy ending. When I say that going gluten-free changed my life, I'm not exaggerating! I'd love to share my gluten-free story with you.

baby boy looking over man's shoulder

My adorably perfect schmoopie

I blame my kid.

Totally joking - how could that adorably delicious schmoopie ever do anything wrong? I'll answer that one: never.

I guess you could say 2005 was a stressful year for me. In March of 2005, I was six months pregnant with our second child while chasing around our energetic first child. My husband and I were selling our current home and building a new one. Apparently factors such as stress and/or pregnancy (bingo!) can trigger the onset of celiac disease (I unknowingly had the gene, it just was inactive). 

That's when the evil “D” began (aka explosive diarrhea). It was ridiculous — too many times a day to count. No one knew what to do with me — my primary care doctor, my first GI doctor, nor my OB/GYN doctor. No one wanted to touch the pooping pregnant woman. After three hospitalizations, I was initially told that the cause was “Pregnancy Induced Diarrhea” and would go away after the birth of my child. In May 2005, despite how sick and weak I was, my son was thankfully born strong and healthy (he must have been chowing down on ALL of my nutrients!).

Now that I look back though, I had minor gastrointestinal symptoms throughout my life that were diagnosed as a nervous stomach. I wonder how long I possibly went undiagnosed before it became so bad? 

Enemas are not fun.

So the pooping continued. Next came the diagnosis of ulcerative Colitis. I was beyond scared as the doctor told me I'd be on medication for the rest of my life. He then matter of factly informed me that the "worst case scenario was to remove part or all of my colon". With my ulcerative colitis diagnosis came the joy (insert sarcasm along with other things) of enemas, extensive meds, and the search for another GI doctor. 

Despite following the doctor's orders, the pooping freaking continued

I was beyond desperate for some relief and scared out of my mind that I would never live a healthy life or leave the bathroom. I decided to take my health and well-being into my own hands, so I went to my local health food store in search of alternative medicines. This is where my life changed.

A nutritionist happened to work on-site and, as I described my symptoms, she matter of factly told me that it sounded like I had Celiac Disease. This amazing person wrote down the exact blood work tests I needed. I called my GI doctor immediately and requested the simple lab tests to be done.

Wouldn’t you know it, my celiac disease labs came back positive and that's how I knew I had celiac disease. Not Pregnancy Induced Diarrhea. Not Ulcerative Colitis. I had Celiac Disease and finally had an answer. Even better, I could heal myself without medication (or enemas, thank god), but by eliminating gluten from my diet.

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Going gluten-free kind of feels like someone died.

When I realized how many "normal" things I couldn't eat, I was pretty much devastated. No more bread? Donuts? Pizza? Remember, 2005 was way before there was a gluten-free restaurant finder, mainstream brands offering gluten-free products and chain restaurants with gluten-free menus. Gluten-free food circa 2005 tasted like the cardboard box it came in - actually, the cardboard box might have tasted better. I really did mourn for the food I could no longer eat.

Then the anger set in. I was angry that I had this stupid disease and had to use 13 flours to make pancakes. I felt like no one understood what I was going through, let alone had even heard of celiac disease. And when they did, they exclaimed "I'd die if I couldn't eat bread anymore!". It was a depressing and isolating time in my life and I wanted to how long after going gluten-free will I feel better? I didn't know anyone else who had gone through this and could answer my question. 

The gluten-free lifestyle.

This sounds like a reality show on Bravo that involves a man with lots of wives or a fetish for tea cup pigs.

Essentially the "gluten-free lifestyle" encompasses everything from your initial diagnosis to things like having two toasters and sticks of butter. It's also used by uneducated dingbats who don't have celiac disease or gluten intolerance but think they will lose weight via the magical gluten-free diet benefits. I hate to break it to them (but I have) -- if you don't need to eat gluten-free, it can actually hurt your body. So go drink your kale juice and shut up.

Gluten nightmares.

As mentioned before, I was clueless when I first went gluten-free. Because of this, I was terrified to eat anything. Deciphering packages to see if they contained gluten was like reading War and Peace. But in the grocery store.

For weeks after I was diagnosed, I would have "gluten nightmares". In my dreams, I was having a fantastic hair day (not really relevant) and was eating some random food. Suddenly, I realize that the food has gluten in it. I freak out. Like full on freak out, spitting out what's in my mouth and scraping my tongue. Kind of like a kid when they eat Brussels sprouts. Then I wake up (drenched in sweat) and realize it was just a dream. Gluten anxiety got to me again.

I thought I was nuts (that's still debatable), but apparently these kinds of dreams happen to a lot of gluten-free folk.

Excrementitious

Definition: of or relating to excrement: concerned with or caused by dung.  Via Mirriam -Webster

My attempt at an example: "All of my waking hours are filled with fearful gluten-filled excrementitious thoughts."

Will I ever poop normally again? 

Let me begin by saying that when I had my first "real poop" after my diagnosis, I excitedly called my husband at work to tell him that I had achieved the penultimate goal: SOLID POOP. Then I asked him to pick up a gallon of milk on the way home. 

All kidding aside, I thought that once I went gluten-free I'd magically be healed. The fatigue, stomach pains, diarrhea, bloating, and nausea would disappear a few days or, at most, one month gluten-free. In reality, it took me close to one year for my gut to fully heal. So go easy on yourself and give your body time. Our intestinal villi have had the crap (no pun intended) beaten out of them. It takes time for our damaged guts to heal and start absorbing food properly once again.

I also found that I had a HUGE learning curve to overcome on reading food labels and deciphering what products contain gluten. Early on, there certainly were times that I accidentally glutened myself. Gluten-Free Tip: If you're asking yourself, "is wheat-free the same as gluten-free?", the answer is a big ol' NO. I learned that the hard way.

Be patient and take care of yourself. There's a light at the end of the tunnel. And normal poop. 

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I'll just have a salad.

How many times have I said that? Too many to count... Dining out is such a wonderful social experience and I felt as though that had been taken away from me. It's hard not to feel "less than and left out" as your friends and family chow down on warm gluten bread, pasta and pizza. To top things off, I didn't have much trust in restaurants when eating out gluten-free. It was difficult enough explaining that I couldn't have croutons on my salad and that picking them off wasn't good enough. Maybe I'll just have some gluten-free water. Yes, a company actually labeled their water gluten-free. #idiots

So my spur of the moment "any restaurant works" days were suddenly filled with research for gluten-free places to eat, planning for gluten-free travel, and mapping out an escape route in case I got glutened. With every year that passes, gluten-free awareness grows and dining options increase. With that said, don't ever feel embarrassed or like a "problem customer" for asking to speak with the chef, questioning how they avoid cross contamination, or triple confirming that the meal the waiter has brought you is gluten-free. 

If you're looking for some gluten-free food humor, I compiled a bunch of gluten-free memes for your enjoyment on Pinterest. Sometimes you just need a good laugh.

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Do you really want to know what happens when I eat gluten? 

So what happens when you get glutened?

Worst. Question. Ever.

Is it just me or do people ask the dreaded question "What happens if you eat gluten?" every single time you mention that you have celiac disease, gluten intolerance, or non-celiac sensitivity. Seriously? Do you really want to know? I try to spare everyone and take the vague approach of "gluten is like poison to my body and makes me sick." But certain (nosy/curious) people aren't satisfied with my vague answer and press on.

Then I lay it out for them in all my diarrhea and vomit glory. I enjoy using the example of the pea soup vomit scene in the Exorcist along with the "It's like lava" scene with Melissa McCarthy pooping in the sink in Bridesmaids. After that detailed explanation, the questions usually stop. 

Genetics are stupid & suck.

After I was diagnosed, the doctor advised me to have my parents and siblings take the celiac disease genetic test. It's a simple blood test that literally takes five minutes in a lab. Guess how many family members took the test? Zip, zero, nada. Alrighty then - nothing more I can really say about my family without asking you to join me during one of my therapy sessions. Anyway - insert awkward silence...

My doctor also told me that my kids could carry the gene, but if they weren't showing any signs or symptoms, they didn't need to have the test completed. Once again, I ignored my doctor and took things into my own hands. We had the genetic test done and found out our daughter carried the gene. Surprisingly, my son (who I was pregnant with when the symptoms began) did not have the gene. We then took the next step and had the celiac blood panel done for our daughter. This would tell us if the gene was active. Luckily, the gene was not active and we were told there was a chance it would remain dormant. Celiac disease symptoms in children mimic those in adults with a few added bonuses of stunted growth, delay of teeth coming in, and enamel defects. Our daughter's pediatric gastroenterology doctor recommended blood work every year to ensure all was good. 

Sadly, in 2011 our daughter's blood work came back off the charts and she was diagnosed with celiac disease. She was literally showing no symptoms at all, so it came with major disappointment. Despite the fact that I was already gluten-free, I went into a panic. How would I ensure she was safely eating at school? Would she feel excluded from class parties because she no longer could eat the gluten-filled cupcakes? What about gluten-free lunches for kids? How would I find gluten-free pop tarts? I ate "adult" food and now I needed to find kid friendly gluten-free meals. 

I’m a “fixer” by nature and this was a situation that was out of my control. I couldn’t take her celiac disease away. I’m sure any parent whose child has been diagnosed with celiac disease or gluten intolerance can relate on some level. So if you have family members or children, make sure they are tested. Even if they aren't showing the "typical" symptoms because let's be honest, there aren't any "typical" symptoms. 

hold-the-gluten-maureen-stanley-jumping-on-beach

Yeah baby - I'm gluten-free!

Gluten-free before and after.

There's a laundry list of gluten side effects for people who go undiagnosed. From migraines and depression to anemia and diarrhea and bloating, the symptoms are extensive. On the other side of the spectrum, others have absolutely no symptoms. Their intolerance to gluten is essentially silent. I honestly feel that this is the scarier of the two options as unless you know to get tested, years of damage could be happening to your body. For me, the symptoms were severe. For our daughter, she had absolutely no symptoms.

For me personally, my "gluten-free before and after" story is pretty impressive. Before I was diagnosed, I had constant migraines, anemia, a high white blood cell count, severe stomach pain, nausea, diarrhea, blood in my stool, brain fog, and lethargy. Keep in mind, this was all going on while I was pregnant with our son. 

After I was diagnosed with celiac disease, went gluten-free, and my gut healed, I felt like a new person. The symptoms I had battled with were going away. I can't begin to emphasize enough that when you are diagnosed, it's not okay to "have a little gluten" or a "cheat day". Every single time you put gluten in or on your body, you're setting yourself back. Yes, you may feel healed and one thousand percent better, but keep your eye on the prize -- it's because you've eliminated gluten. Join me and become another one of those gluten-free success stories (jeez, that sounds cult-ish). 

When I was first diagnosed, I felt like I was constantly at the GI doctors getting poked and prodded (from both ends). Upper GI, lower GI, biopsies, and a colonoscopy. Once I was on the gluten-free diet for some time, there was a period that I was like, "I don't need a GI doc, I'm perfectly fine".  Don't think like me -- none of us are superhuman (well, except those peeps at Marvel and DC Comics). In addition to seeing my Gastroenterolgist doc once a year, I also have had a bone density DEXA scan and routine blood work. Remember, I'm not a doctor, so be sure to routinely see a Gastroenterologist for a full work up.

You WILL be healthy. You WILL be able to survive and thrive gluten-free!

field-of-gluten-wheat

STILL finding hidden gluten.

I consider myself quite educated in all things gluten-free. However, no one is ever a gluten-free guru and years later I'm still learning. My latest lesson was finding out "can gluten be absorbed through the skin"? The rashes on my body as I used shampoo and conditioner with wheat protein shouted a big ol' YES.

It's bad enough not being able to eat gluten without getting violently ill. Now I realized gluten-filled body products were making me sick as well. Whether you have celiac disease, gluten intolerance, or non-celiac gluten sensitivity, the bottom line is our bodies react to gluten. Our skin is the largest organ of the human body and what we apply on our skin does get absorbed into our skin. So my gluten-free cosmetics research, label reading, and customer service calls began. The good news? Once I stopped the products with wheat protein and began using gluten-free shampoo and conditioner, my rashes went away! 

Gluten in makeup ingredients and gluten in skin care products is more common then I realized. I've also found that products have a whole lot of other names for gluten in cosmetics. I never knew Laurdimonium Hydroxypropyl was another name for wheat. I can't even pronounce the dang name. My switch over to gluten-free makeup and gluten-free skin care products will hopefully eliminate my ongoing battle with breakouts and cyctic acne that started when I was diagnosed with celiac disease. 

What's your story?

You know the saying "no two snowflakes are alike"? That rings true with us gluten-free folk as well. How did you know you had celiac disease, gluten intolerance, or non-celiac gluten sensitivity?


While our stories may be different, our gluten-free community is built on the strength of supporting one another.


I'd LOVE for you to share your gluten-free stories (as little or as much as you like) in the comments below.


From the bottom of my heart, I hope in some way that my gluten-free story has helped you. 

you-are-my-butter-half
Maureen

Maureen

Maureen Stanley was diagnosed with Celiac Disease in 2005. Way back before gluten-free was “mainstream“. Maureen created Hold The Gluten blog and podcast in 2008 as a way to connect members of the gluten-free community across the world.

2 Comments

  1. I think I may have had gluten intolerance my entire life, but didn’t realize it until I was in my early 50’s. I would get stomach aches, gallbladder pain, but it will go away. However, what came and bothered me the most were the skin rashes.
    My skin will breakout into rashes that were very itchy. I will scratch until I would bleed. My neck developed deep dark circles. The bottom of my chin would get swollen. At times I couldn’t sleep because I would itch and twitch. Sadly, with time my body cleared but i developed rosacea. So basically, my skin showed me what was wrong with my diet. Giving up gluten and dairy has been a long journey. Giving my my cosmetics and replacing them with gluten free products is an even longer journey. Reading labels, and reading labels is exhausting. But, I am healing and giving up gluten is worth it.

    1. Hi Maggie!

      Thanks SO much for sharing your story! I’m sorry you suffered with those terrible rashes. Our bodies certainly tell us (loud and clear) that something is off. Major kudos to you for persevering through those tough times to reach the point of feeling better!

      I’ve seriously considered going dairy-free as I think my body still has a lot of inflammation. Did you go gluten and dairy free at the same time? I’m wondering if you saw a difference once you were both GF & DF?

      Thanks for stopping by Hold the Gluten and please do come back to comment or chat! Hugs – Maureen

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