Lifestyle

Canary in a Coal Mine- My Gluten Free Beginning

So honestly, make some time and grab a cup of tea or coffee. Warning: Don’t grab a snack because this will get a little “personal”. Keeping’ it real & honest.

From the article: {“I’m just gluten sensitive. I don’t have celiac disease.” A disturbing trend is the use of the term “gluten sensitivity” as if this is a separate issue from celiac disease. The truth is that celiac disease is a form of gluten sensitivity, which is defined as any adverse health reaction to gluten. Celiac disease is a spectrum disorder, with very mild symptoms on one end and death on the other.}

Front and center, I want to say to all of you, this is my personal experience. I know there are a whole list of symptoms which one can experience when they come in contact with gluten. Some experience stomach issues, some inflammation of joint, and these symptoms can range anywhere from mild to severe.  So, please note, these are what I experienced and though some are common, some are not. But then, I’ve never done things by the textbook anyway. {wink!} I guess that’s why I stayed in denial for so long that gluten could be the reason for why I wasn’t feeling well, or experiencing other distresses because I didn’t have the “classic” most often heard symptom of pain in my stomach or the upset stomach so many state as a first sign of gluten issues.
And it always seemed like that was the first question after I addressed my concerns with my doctor of  “not quite feeling well” or “why am I throwing up?” after eating.  “So….do you have any stomach upset or pain?”  And I didn’t.  So I must not have Celiac or gluten issues. Right?  Wrong!!!!  So not only was I in denial, but I wasn’t getting much help from the health resources either.
So my quest and diagnosis pretty much in the beginning was one of self proclaimed.  And only after doctors dismissed my issues, and down playing symptoms because I had no stomach pain or extreme diarrhea and only after I demanded that I knew my body and it was NOT well, was it even confirmed, ok…in my area, it’s still not common for diagnosis  by a doctor. Ugh!  Small towns have their advantages AND their disadvantages. But that’s a topic for another blog post.

And so my story continues…..
The more I researched gluten intolerance/Celiac Disease, the more things that I found in common with myself and for love ones in my family.  It all started to make sense, especially for the women in my family, of which some have passed away so I can never know for certain.  And it may not just be on my maternal side, but also on my paternal side as well. Looking just at female similarities; there were little things that I noticed that were never linked to gluten specifically but seem to make so much sense now after my research when the pieces are added together.

My maternal grandmother:
• Intolerance to alcohol-
During her lifetime, she had stated she was unable to tolerate the slightest amount of alcohol. She NEVER drank. Coincidently that was my first clue to my intolerance issues.
•Stomach issues-
I remember it mentioned a few times that she had stomach issues to certain food. But in the early 70’s/80s of the time I was a child, she never stopped eating them and only ate them in moderation. And back then the links between symptoms and Celiac Disease &/or gluten reactions weren’t commonly known.
• Multiple miscarriages. My grandmother was never able to carry a child past 6 months.  Both my mother and her brother were very early preemies.
• Cancer-
She had cancer of the skin in her 40’s, for which she received radiation treatment.
And then Pancreatic Cancerwhich she passed away in 1994.

My Mom:
• Migraines-
My Mom would suffer from debilitating migraine and nose bleeds.  I know that certain foods/beverages were contributed to this.
•Anemia
•Possible miscarriage
• Cancer/Autoimmune Disease
Myelodysplastic syndrome
Acute Myeloid Leukemia (AML) (autoimmune related)- passed away in 2012

Me:
• Migraines- food related
•Mild anemia
•Infertility issues/Miscarriage(s) 9 weeks or less
• Intolerance worse to alcohol, which I later learned was linked to gluten. My husband swore I was the cheapest date he knew. Over time it went from me drinking 1 beer and getting extremely ill to a 1/4 of a beer and getting just as ill. Not fun!
•Inability to lose weight.
This is not a classic symptom, and usually the opposite is stating with Celiac/gluten intolerance as the body doesn’t absorb nutrients. But in my case my body had become so ill, and I had been thin for so long that the reactions my body took to gluten and becoming so ill was to try to hold on to the wight. Even when working out religiously & running 5-7 miles daily during a year long span while training for a triathlon, I didn’t shed one single pound. I did gain some muscle tone, but didn’t drop one single pound.  I was unable to compete by race time because I had become so ill. Let’s just say carbs (pastas) were not my friend.

Sadly, I only learned of my severe reaction to gluten AFTER my loved ones had passed. There is no way to actually ask them now if any of my reactions/symptoms I had compared to any of theirs. Yes, hereditary links are strong, but still…what if gluten in the products we are now ingesting or applying is that link and not just the genes? But again, another post discussion for another time. But in the meantime, I can only hope that I have broken the link and by stopping my gluten consumption that I will have a more positive outcome. Not only for myself but also for my boys.

If you’ve done any research into this topic, you may be overwhelmed with information.  You’ll find there are no easy answers and this whole gluten free issue is in reality is pretty new.  You may have noticed people stating it’s taken years for a diagnosis.  This can be true.  It seems to be a relatively new disease within the last 5 or so years mostly because it hit mainstream fame with the whole gluten free fad diet scene.
But I just happen to be one of the “lucky” ones who does not get to pick it as diet just for weight loss or health benefits. Well, I do, but it’s a necessity for me.   And even on a personal level dealing with this, I too am still struggling to find answers.
It’s been really hard finding people like myself who have to be totally gluten free.  I will explain that as you read on. There is so much misinformation still out there and so much information that is misleading.  Who can you trust? And what’s really safe?
Between the world of youtuber, bloggers, and such, I haven’t found anyone out there who has severe reactions to both edible and topic gluten like I do.  There are many gluten free youtubers out there now and every one is dabbling/experimenting with being gluten free on some level.  But there are youtubers who state they are gluten free and won’t eat gluten, but are using glutened lipsticks or those that announce they they have Celiac Disease but will take an enzyme pill if they want to eat a non gluten free sandwich in their vlogs. Ack!  That’s a lifestyle I can’t do on any level.  I couldn’t even risk that.  Things I could NEVER do because my reactions are so severe. And I know there has to be others out there like myself.

That’s why my youtube channel, Melissa in MN,  in 2014 and dedicated it and my other social media formats to being solely a 100% gluten free beauty, food & lifestyle channel.  Because, well…that IS my lifestyle.
It’s how I live day to day, 24/7, and I’m since I know I’m NOT alone, I’m sharing the brands and products I can safely use with you.  So, if you are reading this and finding yourself in a similar lifestyle,  I would really like any input you can give to me. It helps when we all share our stories.  Anything else you want to know? Curious about? Something I may not have addressed? I would love for you to comment and let me know.

But again, back to my story….
{another issue after my diagnosis that I’ve noticed…ADHD in a small form.  My thoughts tend to get scattered.  Something was NOT known for before as I’m/was a very focused type A person. Well, those days are gone! Sigh!}

It’s been a little over four year for me now, officially, even though my actually gluten free lifestyle began before my first appointment with a doctor on January 4,  2013. But I use that date as the “birth date” of my new gluten free lifestyle.  I can say without a doubt there is no simple answer to how you know.  I’ve learned that people experience different symptoms, have different levels of  sensitivities and experience different reactions. Yes, there are test, but I learned those aren’t always accurate and you can get a false positive.
If you go gluten free and feel better, you’ve found your “culprit”. I am hoping by sharing my story and of what I’m learning/dealing with, you may will know that you are not alone and may find some options that are helpful to you.

Again, not everyone has the same symptoms.  I seriously doubted the symptoms I was facing in the beginning to be that of issues with gluten because I never had any upset stomach (pain/diarrhea) so many people stated they had. DO NOT  let that discourage you. Through talking to a doctor, my brother in law, who has Celiac Disease,  and yes (even though not always the best to do) research online, you will find having a gluten intolerance and/or Celia Disease in a range of intensity and experience different symptoms when coming into contact with it is not unusual.  Our bodies are rare, different and all usually experience many ways to handle a “struggle” it faces.

So in more detail, this is MY story, how I put the pieces together, and how I’m dealing with it in my day to day life now.

A little back story:
These were all beginning signs for me of my body reacting to gluten.  Now that I look back I can see it clearly and these were all early stage clues.
Parmesan Cheese- I always thought I was allergic to it. After eating I would experience debilitating migraines. But what do you put cheese on?  Bread and pastas.  Gluten!!!!

Alcoholic beverages: Starting a year after my first son was born, breast feeding was over and hubs and I went out to hang with friends. Had a few beers and got extremely ill. First I would get extreme hot flashes, then very nauseas, then cold and vomiting (projectile) and later on once when my husband checked my temp because he said I looked blue, it had dropped to a hypothermic state/temp of just above 95 degrees.  Knowing now, we should have gone to the ER, but in the past I was always fine after such incident and we had never checked my temp to know if that had happened before.  Scary, right?  Well, my “tolerance” or ability to handle this type of drink lessened. My last drink or any kind was on October 2007.  I had a ½ beer and the symptoms I had before followed. This was the incident with me turning blue and was enough to say no more alcohol.
During my annual check up with my OB/GYM. that same yr. I brought this incident up. She asked if I had any other symptoms and I didn’t think anything at that time and I wasn’t putting connections together. I said no and she said, well if you don’t need to drink, lets not and see what developed.  So I didn’t drink and had no adverse reactions to anything else like that.

And then there was the miscarriage and fertility issues.

Looking back I can trace some type of gluten reactions most of my life, but very strong reaction for 15 years, and will go into that later on.
I noticed the biggest response  (illness/reaction) to gluten in October 2012 to be exact.
In October I ate two slices of pizza and went to a concert for date night with my hubs and some friends. I spent the entire 4 hours/concert in the bathroom throwing up.  Yep, it was the pizza. I thought, “What the hell!“  I knew that WAS it…what I had eaten. The response was a hour after I had eaten and there were no other symptoms and it was not that the pizza was bad b/c husband ate the same thing.  My body wanted that out of my stomach.  After the 4 hours I felt much better and drove us home that night b/c I was “sober cab”.  That was MY clue that something was very wrong with the food I was putting into my body. But the next day I was extremely tired and had what I can only describe as a very “foggy” brain. I just couldn’t get my thoughts together. It was a very strange feeling.

So beginning in November 2012, I really started taking note of what I consumed and how I felt after eating. I started to notice a distinct pattern.

At that time it was an every day thing: extreme tiredness, a constant nausea that by 5 or 6 pm I was in my room trying to go to sleep so I wouldn’t get sick (vomiting) and the mood swings/anger was awful. I felt ill all the time and was on edge. I was mean to my husband and my boys. And I’m not talking little meanness, but angriness to the extreme.   Another reason I hid in my bedroom- so I wouldn’t say anything I really didn’t mean to them. :

This was almost the most horrible thing in my life. It was a horrible part. It was like I couldn’t control my own thoughts or the rage.
Can you imagine as a wife & mother. who loved her guys dearly, because I did and do, how frustrating that was?  I literally thought I was going crazy.
But I’ve learned that IS a symptom too that some can experience. Gluten was affecting my brain, not only my intestines.

My husband’s brother had been diagnosed with Celiac disease some years ago and over Thanksgiving 2013 i was talking to him about how I was feeling so bad and my symptoms. Discussion with him and symptoms that matched through my research online…things started to make sense of why I felt so bad. Gluten intolerance/Celiac disease kept coming up.
Now my Father in law’s wife also has a gluten intolerance, but she will eat foods (cross contamination a huge issue for us) or use things I or BIL never could- personal care items,etc.

Side note: See…many levels of sensitivity. And none of us are blood related.  All discovered within the last few years. What the H.E. double hockey sticks????

But I digress…. I called to make an appointment with a doctor in December 2012.   I was referred to someone but couldn’t get in to see her until January. At this point I was so ill that I found a food/diet guide online to try to the best I could to eliminate gluten from my diet.  On the safe side, I was living on raw salad mix, hard boiled eggs, gluten free Van’s Waffles, fruit, and honey. I was extremely hungry, but I can not tell you within a week of this diet how much better I felt.  It was like crazy good!  Better than I had felt in years.

By the time I had my appointment, I knew what the issue was. It WAS gluten and the Doctor confirmed it.
But here’s the downward spiral. I had kept a record and had eliminated gluten from my diet. I had down a really great job for the most part. So in discussion with the doctor…

1) I had been gluten free for a while and blood testing even before going off gluten are were not accurate.  And it was a $400 test.  Ruled that out because of cost and was probably a good probability at this point in time after almost a month of diet change it would come back negative.

2) To have the intestinal biopsy, which is an invasive procedure, where they actually test to see if the cilia (little hairs) of your intestinal lining are damaged, I would have to go back to a “normal” (gluten) diet to even have a chance for a positive on the test. Again, the doctor stated that this too could come back negative.
So in out discussion and with my husband backing me up with how ill I had become and  I chose not to because of the reaction I had in December and how much stress it put on my body. And because I wasn’t displaying any of the “common” cramping, constipation, diarrhea some patients experience, I and my Dr. forgo this test.  But you know, some Dr. will deem patients as having Celiac with this without test. (Ie: Brother in Law). It just depends on you medical facility. I can’t say there is really any doctor in my area that has a true understanding of the gluten issues or Celiac Disease, so sadly, I was on my own to find my own cure and be my own activist.

So I guess technically in hospital terms,  I am “labeled” non-Celiac gluten intolerant. But on the extreme side as it takes very little gluten for my body to react with great distress.  In July of 2013 I discovered just how distressed my body could get with the smallest amount of gluten.  To celebrate my Father In Law’s birthday, we traveled to meet family at a pizza restaurant. Three out of the family have gluten issues, so we decided to sit outside at the picnic tables.
I never went in, but ordered a glass of water.  Flour dust on that drinking glass made me just as ill as if I had eaten a slice of pizza itself.

I literally became a Canary in a Coal Mine when it came to gluten. Even the smallest traces of it effect me with horrible consequences.

My symptoms begin within an hour or two of consuming gluten, I will be violently vomiting non-stop. The scary part is when I’m vomiting so bad that I am often unable to catch my breathe and begin chocking.  This has frightened my husband on more than one or 2 occasions and we were on the verge of seeking hospital assistance.
And I can get angry pretty easily because I literally am wishing death upon myself because  I feel so bad. I believe on a few times during my worst days I may or may not have made a deal with the devil himself. Forget the Coal Mine, I was at the CrossRoads.
Seriously, I wouldn’t wish my symptoms on anyone. It’s horrible! If you’ve been glutened, you know of what I speak of.  It at its high…or low point?  only what I can imagine hell must be like.

In August or September 2013,  I finally  realized that not only was food an issue for me but also body care items and makeup.  Putting symptoms together, I pretty much had a handle on my food (hidden gluten/safe items) and had not touched edible items that day…but had gotten up and put makeup on.
The culprit: Almay Get Up & Grow Mascara.
Hidden ingredient: Hydrolyzed Wheat Protein. Why?  Seriously, why are we putting this ingredient in makeup/beauty & body care items?
Symptoms: Stroke- like.  Seriously, my brain was shutting down.  I got very splitting headache, very nauseas/dizzy, and was in the middle of typing an email to someone about a time to meet later that morning. I literally could not think of how to type the word “meet”.  I knew in my mind how to, but I could not make my fingers type it for the life of me. Scared the heck out of me. My arms went numb and in my mind I could say it, but could not get that thought to my fingers to type it.
I was gonna call my husband, but couldn’t remember his # or think of how to put two steps together to scroll to it on my phone to auto dial. At that point I couldn’t even think of how to dial 911.  This all with in a matter of 5 minutes or so.  At that point I had gotten so tired, I remember laying on my bed and praying to God to please let me just wake up. I ended up sleeping a few hours and when I woke up I was a little brain foggy but otherwise, besides being extremely afraid of what had happened, mostly normal.
I discussed this with a doctor at my next appointment and at that point there wasn’t any test we could do. Advised to try and read ingredient list, which I am very diligent about NOW. Ack!  So scary!

The Canary in the Coal Mine in all it’s glory, was more likely a blood hound. If gluten was in something, food or beauty related…I would find it.  I’m calling this a curse. No way is this a blessing.

So back tracking to touch again on the first clues I had:
The parmesan cheese was actually based on what I ate it on. I can eat parmesan now. But it was on pasta and garlic bread.  Two gluten loaded items. ☹  And it was always strange that I could eat it on Chicken parmesan but I thought it was because  that was cooked and maybe the heat destroyed whatever was in the cheese itself I was allergic too. But chicken nor tomatoes have gluten. Makes sense now, but again…the puzzle is completing itself now.

And the alcohol I drank (beer) contained malt- which comes from barley. A GLUTEN loaded grain!!!!  At that point the alcohol delivered that grain straight into the bloodstream, hence the earlier warning and more severe reaction to gluten verses food.

But food I did have reactions to, but wasn’t putting together in the earlier time frame.  We ate pretty healthy at home, but my husband mentioned to me on several occasion that I would always get sick when we took trips somewhere. Literally, we would travel and I would end up missing out because  I had to stay in hotel room because  I was sick. Looking back it’s because  we ate pretty healthy at home and when traveling we would go to restaurants and I would order those high gluten items. Burgers, pizza, fries, etc. Makes perfect sense now!

Weight issues: I gained weight and no matter what I did, I could not loose it. I even trained for a triathlon, ( was to run the 10K part) and was alternately running the last few months before  race day 5 to 7 miles daily and didn’t drop ONE single pound. Yep, that was gluten related.  The year 2013-2014 of being gluten free 20 pounds came off like nothing.  And I will strews before we were a healthy food family.  Not a pizza, hotdogs,  processed food family.  I made wheat bread, we ate whole grain cereals, veggies, meats, etc, and pasta.  But the items I was using were loaded with gluten.  And yes, I had to drop out of training for that triathlon because/c I was getting so sick. I was eating lots of carbs (pasta, etc) and that was “poison” for my body. ☺

And one of the symptoms listed is infertility issues and miscarriage.  Yes… and sadly yes. Those are things that I experienced. Now without a doubt can I say gluten contributed to those? I don’t know and won‘t know considering I‘m not trying to conceive now to know for sure.  But trying to get pregnant before was not easy and  in my heart, I can knowing what I do now, gluten could pretty much be linked to those issues.

For me it is still is a learning process. It always will be. There are and I will try to avoid them at all cost, but there is always that risk of gluten contaminates finding their way into my diet, health or beauty items and make me ill.  Until the  $ makers realize this is a serious issue, that won’t change. I just have to be as diligent about that I use/consume until that happens. Again, I am on the extreme sensitive side of it and have decided to go as “earth” based as I can. The FDA is allowing most processed foods to label themselves as “gluten free” if they are less than 20 ppm (parts per million) gluten.  This is why I sometimes had a reaction/got sick from items I thought were safe. Again that flour incident taught me that even a hint of gluten can make me extremely ill. So convenience foods are a “crap shoot” for me sometimes. I would rather live on items I know never had gluten in them….”mother natures bounty”.  ☺
Convenience isn’t in my cards anymore, but that’s fine with me if it means I’m healthy and, in the long run, there for my husband and boys.

People, I know joke about it and there are people that just don’t get it. I GET that. I even have family members with mild gluten intolerance that don’t get how sensitive I am.  Until I was faced with this, I never knew much about it.  Education is the best advice I have for this disease. And it is just that…an autoimmune disease.
Personally, THAT last incident with the mascara, is when I knew just how sensitive and scary gluten affected my body. It was no joke!  Now when I say I won’t go out to eat because I can’t take a risk with my health, or if there is any question about what someone made or what ingredients are in a product I use (food/beauty item) …. it IS that SERIOUS and I won‘t even tempt fate to take a chance.
This is my new life and I have to deal with it the best I can. Not one that I would have chosen, but every day I deal with it as it is. ☺ I always say God has a purpose for everything, and who am I to question his journey for me. ☺

Phew!   Hope you listened to me and grabbed something to drink.  Lol!

Have you recently been diagnosed with Celiac or a gluten intolerance?  What were your symptoms and how long did it take for you to get a diagnosis?
Would you like to share in the comments? Open up a discussion?

I’m definitely not a doctor, this is just my personal experience. My story!  And I’m sure there are things that I left out, so feel free to ask and I’d be happy to answer them for you. I guess the biggest thing I want you to know is Know that you are not alone.   It can be very scary during those first few days/weeks  or I sure felt that way. ☺

Let me know if you want links, recipes, etc.  I will share everything I have with you. Whatever you need, let me know.

Wishing you all a blessed, happy, healthy and gluten free day.
Love Melissa -noteworthy copy.png

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