Wednesday, July 12, 2017

Pick Your Poison- Life with Celiac and How to Deal With Doubters/ Health and Choices

*I actually have a pain journey of photos. I take them either after a bad attack, sometimes during or at the beginning. It helps me keep track plus it also reminds me of how far I have travelled in this journey. This post will share some from a few of the key moments of the last couple years of my pain cycles. This is for my fellow sufferers. You are BRAVE. You know your body. You are strong. Rest, be, advocate, heal and allow... I have not written about Celiac specifically because of all the flack I receive. Plus, "REALLY? YOU HAVE ANOTHER CONDITION!" Isn't high on my list of things I want to hear. However, I am constantly googling other's experiences, and the personal stories are what I treasure most, so here is a brief version of mine. Also, just because I also have Autism or know whom I am in other components does not rule out that I am a multi layer person with a host of differences and similarities in the human condition or can't have other "labels." Besides, labels are actual a way to explain, understand, grow and learn to enhance and manifest life.*

For the first time in my life, I ate Pierogis and they did not make me writhe in pain hours later or feel like my gull bladder was on fire. Because they were made with rice flour and guar gum. The Pierogis were gluten free. Two dirty words that are judged and often spoken with a sarcastic tone...."gluten free..."

Later, I told my husband, "I feel guilt about feeling so great on these items that are supposed to be worse for me than gluten. I have read all the articles on both sides. I know the fillers or gluten free substitutes can have more crap than a 'normal' Pierogi. However, I also know that we are smart about how we eat and make sure that our exposure to these things are minimal and we counter balance with vitamins, whole foods and healthy treats. But sometimes it is just nice to be able to eat a pierogi, or a store bought quick snack, or a gluten free pizza or a gluten free pancake and NOT feel sick after."

My husband replied back with his usual practicality, "It's just a different poison. Poisons are different for everybody. Define poison."

"A substance that can cause death or illness in a living person or animal...or plant or..."

"Exactly. Gluten is your poison. Thus, you eating the rice flour or Xantham gum or Guar gum occasionally and NOT suffering is a big deal. For those who can actually eat gluten without getting sick or having an intolerance or being Celiac- great for them! They may have other poisons or multiple ways their body gets sick or slowly dies. You are lucky you found out yours. So enjoy the food that doesn't make you sick even if the research says it might. Everything can be poison. Every food will have downsides and research to back it up...Some more than others. Pick what is right for you. You are the one who tells me this research-  so actually apply it to yourself."

Caption: Photo by my son because he thought I was adorable squeezing his stuffy when I was in a painful attack.

My mother doesn't wish to believe I have Celiac. Let me state that generally my mother is very supportive and she is entitled to her own opinion. I know what it is like to live with that doubt, from not only strangers, but from my original, organic family. My husband believes that it would mean she would FEEL like a failure on her part to not have picked up on it, or that she wasn't in tune enough. But she wasn't a failure and it was me that wasn't in tune. I let it slide on most days and go silent...but now I KNOW. Part of the reason she doesn't believe is because I did not get the confirmation Gastroscopy. Some prefer solid "proof" which is legitimate but also kind of funny because if one actually read the research they would find that even a Gastroscopy can miss Celiac if the biopsy is taken from unaffected Villi...which CAN happen more than one thinks. What is more of an indicator of Celiac is if a person is so sick, goes off of gluten and becomes better, takes gluten and is very sick again, and so on. My mother was quite in tune with most of my needs and always took excellent care of me when I was sick. She was always very nurturing and my children STILL ask and prefer her when they are ill. I am not as conscientious or even that great at hands on care. She is. I will be forever grateful.

Caption: The last time I was in the hospital for "an attack."

I will NEVER eat gluten again on purpose. Even if I miss the occasional glutened treat. It is not even tempting for me because the pain it caused is still fresh in my mind. I also refused to do the Gastroscopy for multiple reasons, but the main reason was that I would have to eat gluten for three months leading up to it for accurate results (because the gut can heal and not be as apparent if this step is not taken.) I had already been off gluten for half a year before the Gastroscopy appointment and I was NOT willing to go back to being hooked up to an IV experimenting with pain meds for the severe gut pain that had me in a fetal position for hours. I also wasn't willing to purposefully put myself in a position where I had a rash for days, abdominal bloating and pain, exhaustion, extreme constipation, head pain and other symptoms that eased up a few weeks off of gluten. Plus, my doctor was also Celiac and knew the symptoms and said I was a pretty clear case. Especially since my symptoms went from regular IV drips to needing help only a few times a year when I seemed to accidentally be glutened again.

Caption: The photos below are a gut related rash that develops every time I eat the triggering food. Gluten is one but I think there may be another not yet discovered. They are not zits as a specialist ruled that option out plus they will suddenly arrive and I feel them become. They start out as massive itchy boils and turn into zingy bits of burning pain...then after an hour or sometimes a few days they disappear. They cover my torso, back, sometimes neck and face, arms and sometimes legs. Then they go away once I am fully recovered.
My mother argues that we would have known when I was a child as it is a lifelong condition. Actually, Celiac Disease can develop at ANY age- click HERE for more. It can even be provoked by a virus into active duty. Celiac can also be triggered, because like any Autoimmune disease, different times of life can cause it to be apparent. CLICK HERE.  This article HERE  also debunks common myths of Celiac.

I think people also doubt Celiacs because they tend to have other conditions. This is also common. Iron deficiency, mineral malabsorption issues, and many other factors that come with this can also overlap with other conditions. It's not like life says, "Oh you already have a disease! You can't have two more!" or "You have Anemia and Lyme? Well Celiac is one condition too many...we will just skip over your body and find another host for this disease." In fact, if one has an Autoimmune Disease it is very likely for the body to host another condition like Chronic Fatigue, Fibromyalgia, Arthritis, Thyroid Issues, Anemia, Lyme Disease...the list goes on. The body can become a host to these because the wiring is 'off' or one is the root cause while the others are co conditions...or one develops later because of damage caused ect.

Caption: Three days after an episode and I can barely sit on my deck and hold myself up.
I don't blame my mother for missing the signs or not believing. I respect her own opinion, but when it comes to my body, I know what is right for me. I read the latest issue of Allergy magazine. I didn't even know there was a magazine dedicated to Allergies, but I saw it at the Drugstore and the main title had to do with Celiac and Eating Disorders so I bought it. The entire article felt like the story of my life.

Caption: I thought it was amusing there was an ALLERGIC living magazine...and I was surprised at how legitimate most of the articles were...It was a fun, fascinating read.

As a child I was very picky about what I ate. Because it felt like everything made me sick. I was constantly feeling yucky, had more stomach flu's than anyone I know. My best friend didn't throw up until she was a teen. That shocked me. I didn't know it was possible to barely throw up or get sick during a lifetime. I felt awful 80 percent of the time. I was always hurting or sore in my gut. I was prone to continual constipation. I was taking laxatives and these little tiny round stool softeners before I was ten. I hated that stuff.

I still have a tough relationship with food. I am always scared I will either react or that I will get sick. I rarely eat out or trust anyone besides my husband to cook for me. When I do actually eat someones food and ask for it again- it is a HUGE step forward. I have so many allergies and intolerance's it could take up paragraphs. It is ridiculous what I can't absorb and I feel like my list of what I CAN eat is getting smaller and smaller. (I am seeing a specialist who has her MD but is also a Naturopath about this in the fall with multiple appointments and more detailed bloodwork.)

Caption: Rash on my face after an episode and needing a few days to recover.

As I read the article pictured above, I realized that while I have never struggled with Anorexia (in fact I tend to have at least 15 pounds I can never lose) I DO have the kind of eating disorder they were speaking about. The type that is AFRAID of food. Afraid of the pain it causes. I know enough to eat healthy ish. I force feed what I can. But I dislike the pain associated with food that has been my general experience. Part of this is due to Autism and textures, but most of it is due to the previous pain I have suffered at the hands of eating the wrong item. I rarely ate and I still struggle with food. I have a love/ hate relationship with every item on my plate. I usually am desperate to eat my husband's meals but eat a few bites and I am done. He says I am the most frustrating person to feed yet he still tries. I adore him for that. The first two years gluten free were full of paranoia that I would suffer again.

Thus, when I actually eat something I enjoy, that does not give me gas or pain or a rash or constipation or the runs or any other gut trouble right away or hours later, I do a happy dance. And I will most likely eat that item a lot until my body decides it has had enough and I have a bad experience and it gets crossed off my list. My family can not keep up with what I can and can not eat. It is RARE for me to experience food as a positive experience.

Gluten tops this list. I would get wicked pain every time after I ate pancakes... even though I loved them. I got sick if I smelled toast because of the response I had each time I ate it. Most of my childhood foods were gluten products. We ate a lot of cereals, toasts, baking, pizzas, noodles and carbs because we were poor. I don't blame my parents- it was what it was and at least we ate. But I can not think of any of these items without feeling bloat and sickness. To this day Ichiban noodles mentioned create a visceral response and I have to hold back a gag. Although I loved them as a child because all the children brought them to school. And I was also weirdly addicted sometimes to the very foods that were causing me pain. This can happen because the brain can crave what is actually making one sick. I thought these foods were my favourite. Now that I have gone off of them for years I can't think of them without feeling gross. I still love baking but the gluten/ nut free baking rarely causes me any pain. It's not as pleasant of a texture for the most part, I miss that aspect of gluten products, but I'm willing to forgo that pleasure if it means less symptoms.

It is basically impossible to avoid all gluten. I know when I have accidentally been glutened because of the same symptoms that always present themselves. It usually takes me two full weeks to recover in my gut. I often think I have the flu, but when I don't throw up, I realize what has happened. Gluten can be hiding in spices, condiments or hair products. I am not extremely vigilant with care products and I know that something is still triggering my condition at least every few months.

Caption: The day after being glutened. 
When someone has been food poisoned they generally never want to go back to the restaurant that was the culprit or eat the same food again for a LONG time. I was slowly poisoned for years. Once I had the self control to actually DO something about it, I never went back. My final straw was the fourth time in a few months, I was hooked up to an IV in extreme pain and none of the meds were working. All the other tests came back negative and I did not have the flu virus or bacterial infection or even food poisoning in the traditional sense. My doctor came to see me and said, "I think you need to do an elimination diet focusing especially on no sugars and no gluten." That experience was SO bad...I even threw up a few times...that I went home the next day and gave away or threw out every item that had gluten or sugar in them. We had just grocery shopped and about 900 dollars in products was given away but I didn't care. I was THAT determined. I knew if I didn't go cold turkey I would never do it. It took me years to get to this desperate point. My husband witnessed my pain and he was also having other issues, like the runs for months, and the doctor thought it would be good for him too, because his test results were also fine for bugs or worms or viruses. We decided our whole family would make the change. Two weeks later his symptoms disappeared and I was in way less pain. Three months later I was back in the hospital for another episode, and two years later I had three more hospital trips in total for the same issue...but that was less than the average every three months I was experiencing before. I got depressed about this fact but then read it takes someone with large Villi damage up to two years to even BEGIN to heal. 

It has been four years now without gluten or processed sugar. I will NEVER go back. This was the first year I have never had to be hooked up to an IV drip with pain meds. I have been to the hospital for other reactions, conditions like Mono and normal life stuff. Just because I have Autoimmune Diseases, does not mean I will not also experience viruses or the occasional bacterial infection. But I have not actually had any sort of stomach flu for over two years. If I get a bug it is light or usually a form of gluten contamination or eating the wrong food. But it's not to the extremes it was before.

Let's say my mother was right and I don't have Celiac. Which isn't the case, but for speculation sake, let's say this was true. I would STILL not go back to gluten. Donuts, pizza, pasta, pancakes...they have all lost their appeal. I can occasionally enjoy a gluten free substitute of these...and sometimes I think the substitute is better than the gluten version. For instance, most baking done my way I prefer gluten free. But part of the reason probably is that I do not feel gross immediately after. The longer I have gone not eating these items, the less tempted I am. I can see adds that make people salivate for a donut and I feel nothing. I can smell the baking of bread and savour the smell, I will even go up and sniff it, but usually that sniff is enough for me. In fact, often I won't feel that great after and all my desire dissolves for the item after my sniff. The same happens to me for gluten baking or cinnamon buns ect. I think my brain recalls all the times bread made me sick even if I loved it. My only weakness is pizza. Sometimes I wish I could have a really beautifully textured pizza. Gluten free is ok but it's NOT the same. The closest I have come to a delightful pizza experience was the Rocky Mountain Flat bread Company's Gluten Free version.

Caption: One of many tests to figure out what is wrong...

Gluten is a beautiful option if one can tolerate it. Especially if it is not the refined flour but Heritage flour or Sourdough bread. These options feed the healthy bacteria of the body and if it's tolerated, make a great addition to a well rounded diet. I am not painting gluten as the devil for everyone. But forgoing gluten breathed LIFE into our family. We have less behavioural issues, we have more health, and we have less pain. We had to recognize what was OUR poison specifically. When my children are older they can try gluten and see what happens, but for now it is easier and has made such a difference in them, that we do not allow it. Maybe they are not or will not be Celiac? Maybe this diet has given them enough healthy bacteria that they will be able to tolerate a lot more foods better than I can? Maybe they will LOVE their glutenous foods. I ask that they never go back to refined sugar or sugar substitutes and that they stick with honey, stevia, or coconut sugar for the occasional treat, but I am fine with them experimenting out of the house with gluten. But not now. I need them to be on the same page and I have seen the difference in their lives and I am unwilling to budge on that. I will be more lenient occasionally with what they have and watch for symptoms. I am easier on gluten than I am on sugar or nuts for them, but I NEED to be careful for myself. My husband will occasionally 'cheat.' I think he has an intolerance but is not Celiac. I can always tell because he will stink up the room for an entire night when he does cheat, so generally I ask him not to. Plus, he gets immediately cranky and more sensitive and is prone to headaches. If he is going to eat gluten, he has to partake away from me and not in our house. 

Caption: Not even able to turn the computer on after all...too tired to do anything but snap a picture and lay back down...

I am Celiac. I know this with every fibre of my being. Occasionally I doubt, and wonder if my gut healed in another five years or so, if I could eat the occasional Heritage or Sourdough option. I would love to round out my diet...but I think that is more wishful thinking than actually NOT being Celiac. I don't think Celiac is my root issue but I think it is a crucial part of my health puzzle. The more I read up on Celiac the more convinced I am that it is the right diagnosis. The longer I am off gluten, the better I feel. That matters.

The other day I was out at a restaurant and I dipped a fry in this beef dip and ate it, realizing after that all beef dips use wheat. Five minute later my face suddenly flushed bright red and I heard blood rushing in my ears. I felt funny. I felt the urge to hysterically laugh for a second and my brain felt like it was in a fog. My hands shook a bit too but then after about ten minutes I was good but had crippling anxiety. I realized it was from the fry consumed. Shortly after my stomach started hurting and my nose was running. I looked it up at home because I could not shake my weird symptoms and realized it was all common celiac glutened symptoms. (See the link on the bottom of this post for a more in depth analyzation and explanation.)

Some doctors also cast doubt on my Celiac because of the lack of the scope, but most do not. I also unfortunately agreed to a blood test for Celiac TWO YEARS after I was off of gluten which of course came back negative- if you do not eat gluten for three months leading up to it your body won't show the reactive antibodies....and that result is unfortunately on my chart if anyone cares to look. But my doctor pointed out that it should not have been included in my blood work when I was off gluten for that long and that Celiac is still a legitimate diagnosis for me. Everyone will have their own opinions. Heck, I was told I didn't have Mono, due to my lack of swollen throat, and that the blood test was just a precaution because my daughter had it, and low and behold, it was confirmed. Positive blood work is often not a lie, but negative blood work can often be faulty. The doctors were surprised that what I present did not line up with what WAS. This happens to me a lot. What matters is what I believe, what makes me feel good, and what health steps I take for a better future.

Caption: Depression as a result of feeling restricted.

Your health is in your hands. Drastic measures can sometimes be the very definition to LIFE. Most of us are unwilling to face the fact that we may have a condition we do not wish to have. Or have to forgo food we crave eating or change our lifestyles so we sit on the couch and cry about our lack of energy or constant pain. There is a time to rest or cry about chronic conditions. I have my moments...but health requires change. I may not be considered "healthy" but actually, I am pretty healthy for the conditions I have, because of the many changes I have made to lifestyle and diet. A disease is not necessarily a sentence to a horrible life. Sometimes, it actually provides an answer and key to the remaining bit of life being more manageable. Don't doubt what works for a person. It's important to provide other research, answers and  options, but if someone is making changes that create a better world for themselves, why do we sarcastically cast doubt or make them feel they are wrong? What is the use in that? If it works for them, celebrate it! If it gives them positive attention, why get jealous? Let them have it. Go out and find your positive attention. If they use it as an excuse not to live their most meaningful life, take that lesson for yourself and at least live YOURS. I may be Celiac, Anemic and a Lymie but I'm not dead yet. I struggle but I also have a lovely little existence for the most part... I don't wish for pity- I want support and understanding from the few I trust. From the rest of the world? Respect or at least to be left alone in my own choices. What is it you want from your health?

This site explains what happens to a celiac when exposed to MINIMAL levels of gluten. This is my exact experience.

Song Choices: Carry On- Fun, "If you're lost and alone or you're sinking like a stone. Carry on! May your past be the sound of your feet beating on the ground. Carry on, carry on...But I like to think I can cheat it all to make up for the times I've been cheated on... We are who we are on our darkest day, when we're miles away, Sun will come and we will find a way..."

Bad Day- Daniel Powter,  "Sometimes the system goes on the blink, and the whole thing it turns out
Wrong, You might not make it back and you know that you could be well, oh, that
Strong, And I'm not wrong So where is the passion when you need it the most?
Oh, you and I, You kick up the leaves and the magic is lost 'Cause you had a bad day
You're taking one down, You sing a sad song just to turn it around, You say you don't know
You tell me don't lie, You work at a smile and you go for a ride, You had a bad day, You see what you like, And how does it feel one more time? You had a bad day."

Some nights- Fun- "Some nights, I stay up cashing in my bad luck. Some nights, I call it a draw, Some nights, I wish that my lips could build a castleSome nights, I wish they'd just fall off...This is it, boys, this is war, what are we waiting for? Why don't we break the rules already? I was never one to believe the hype save that for the black and white. I try twice as hard and I'm half as liked, but here they come again to jack my style. And that's alright; I found a martyr in my bed tonight. She stops my bones from wondering just who I am, who I am, who I am. Oh, who am I? Hmm Hmm. Well, Some nights, I wish that this all would end...Well...That is it, guys, that is all five minutes in and I'm bored again. Ten years of this, I'm not sure if anybody understands. This one is not for the folks back home, I'm sorry to leave, mom, I had to go. Who the fuck wants to die alone all dried up in the desert sun? My heart is breaking for my sister and the con that she called "love". And then I look into my nephew's eyes...Man, you wouldn't believe the most amazing things that can come from...Some terrible nights..."


Hillary said...

It’s striking to me how beautiful you are even while experiencing such an achy & hard journey with your health. I truly wish your life path didn’t take you through this. Sending love & a soft hug.

Kmarie A. said...

Thank you so much! ❤️😘That is meaningful to me πŸ’•✨✨I wish so too... just like I wish that your year hadn't been so fraught with loss as well πŸ˜₯ You have been on my mind a lot. Thank you for the love and virtual hug- means so much ❤️❤️❤️

S said...

I am also gluten free and sugar free now because of recurring health problems. Let me see now how it impacts me. It is really hard because most of the food in our country is wheat based. The other day, I was having horlicks ( a health drink that does not cause any reaction in me ) and it impacted me. I don't know why I took it in spite of reading the labels. Maybe because I was always fine after taking it.
About family and friends, well, they are really clueless and ignorant about gluten and stuff because awareness of no-sugar or no-fat diet is there in our country but the awareness of no-wheat is still not there, can you believe that ? The concept of gluten free is known and practiced only by upper middle class/rich people and high end private clinics in our country. It is yet to reach the masses.
Hard,hard,hard- that's what I would say. Hope you feel better very soon by healing your gut,
take care,

Ashe said...

Three months of torture for an unnecessary test!? Yeaaaaah, screw that. Not worth it, especially when you've got a doctor already working with you without it. I had read somewhere some time that there is some ingredient that almost always accompanies gluten and that many people who appear to be Celiac are actually allergic to that ingredient instead, and would be negative/pass a proper Celiac test. I can't remember what it was but it didn't seem necessary to memorize since a Celiac diet neatly takes care of it.

I have a similar (and much, much milder) relationship with onions, and with a type 1 diabetic in the house, we have to stick to low carb and low sugar and keep a high sugar something on hand.

And like Miss Hillary said, you're always a rather pretty lady no matter what's got you down. :)

Kmarie A. said...

S; awe I'm sorry 😐 that is hard!!! Eating gluten free should not be just for the wealthy but I understand how that could be as our grocery bill is double with healthy non gluten options... it is expensive- here in Canada there is reimbursement for that extra cost if there is proof with the scope. I don't get it cuz I didn't get the scope. However, I feel lucky to live in a country that has that option and opportunity ✨I hope more places get there soon. It would be ideal for all to get healthy food options without getting sick.πŸ˜₯ Very hard indeed πŸ˜”πŸ˜˜I hope u also start feeling better soon πŸ’•I am also sorry there is no awareness and ignorance . I know what that's like in other areas. I hope changes begin soon. I am glad you are getting aid sometimes though and figuring out what works for you.

Kmarie A. said...

Ashe: EXACTLY> not worth it plus months of recovery. Yes, that is also too true. Yes I have read that. I forget what it is called too but its easier to stay away from it all in that regard. Yikes. Onions. That would also be hard as they are in a lot. And diabetes is hard. I had gestational diabetes and that was enough for me! I am glad that ended and I feel for those who have no end in sight. Super complex food things!
Thank you. I often dont feel it but thank you. You warmed my heart when I needed a smile:)

Amy said...

Woow - Kmarie, this is so real. I am elated for you that you have identified your total intolerance to gluten and that you know that having it IS poison to your body, like Philip stated. I know that gluten intolerance and sensitivity is such a real thing.

BIG hug,

Kmarie A. said...


Thank you...yes it is good when each person can find their specific poison.


Amy said...