I HAVE CELIAC DISEASE

I HAVE CELIAC DISEASE

Recently I announced that I was diagnosed with a severe autoimmune disease called Celiac. It has been a blessing to find out all the reasons for x,y,and z… but it has also been incredibly isolating as I say goodbye forever to a life I once knew.

 

What is Celiac? “Celiac disease is a serious, genetic autoimmune disorder triggered by consuming a protein called gluten, which is found in wheat, barley and rye. When a person with celiac eats gluten, the protein interferes with the absorption of nutrients from food by damaging a part of the small intestine called villi. Damaged villi make it nearly impossible for the body to absorb nutrients into the bloodstream, leading to malnourishment and a host of other problems including some cancers, thyroid disease, osteoporosis, infertility and the onset of other autoimmune diseases.”-https://www.beyondceliac.org/celiac-disease/

 

I always knew something was wrong with me… I always felt ill! I not only experienced the chronic diarrhea, headaches, canker sores, fatigue, painful stomach issues, nausea…. Ya know the basics of this charming disease. It completely attacked my nervous system. Numbness, tingling, loss of muscle control in hands, panic attacks, depression, anxiety, dizziness, extreme sensitivity to light and sound, brain fog, slurring and stuttering words, ear infections that accompanied surgeries, tooth aches, ance and sinus infections. Lets just say I was and still am a mess.

 

I had read/heard the term ‘celiac’ thrown around on social media and as the years went on, I ever so often touched back to it via Google. I questioned if I had it, but like any normal person I wished I didn’t and decided to forget about it. I lived in what I thought was a normal state of life… complaining to my poor husband every minute that “I was sick” “I really don’t feel good” “I can’t breathe” “I need to lay down” “I feel so off” “I am so bloated” “Did I mention I DO NOT FEEL GOOD”... the words fell out of my mouth as if they were ingrained on my tongue. Then I got pregnant with Tessla. For those of you who didn’t know me during that time… it was the hardest thing my body had ever experienced in the entire world of anything. I was so sick, beyond normal pregnancy morning sickness symptoms. I was sweaty ripping my clothes off with panic attacks and vomiting like I was on the set of The Exorcist. Yes, again my poor husband can attest to cleaning vomit off the walls and ceiling. It was so bad I would lie on the couch and not move for hours. I couldn’t keep anything down… I developed hypertension... went to the emergency a lot. Now come to think of it my first ultrasound of Tessla was terrifying. One night early on, like 6-7 weeks into the pregnancy, Nick and I were leaving Olive Garden (hint yes I ate a shit ton of gluten) and I nearly passed out in pain walking out of the restaurant. Luckily our then home was right up the street. I told Nick I just need to lie down I didn’t feel good. Later as the hours past the pain was unbearable and signs started to point to a miscarriage. I was a mess, since we were actively trying to get pregnant. I got a hold of the ob and she advised me to go to the emergency room immediately. I was taken back very quickly, long story short I left there being told ,”You are showing signs of a miscarriage….” I was bawling and they wouldn’t let me see her. The discharge doctor felt so bad for us, he quickly showed me the ultrasound and again I lost it.

I went home praying that everything was okay…. And within the week we were staring at our healthy baby through another ultrasound and I felt like I could breathe. I was still haunted at what had happened and pressed on. As the months went on I became so depressed. The kind of depression that wouldn’t let me move. I can still remember sitting in a chair staring out a window-feeling nothing but the wet tears rolling down my cheeks. I couldn’t move. I thought God this isn’t me. Fast-forward to her 86 hour complicated labor and delivery, she was immediately taken into NICU and I didn’t get to see her for more then 5 minutes (not exaggerating). As soon as they handed her to me, it felt like I was hit in the back with steel rod and I practically screamed, “I can’t hold her!”. I don’t think I can ever forget the judgmental looks I got from the nurses like I was a mom who didn’t want to hold her baby… like I was not attached…. Whatever you want to call it. I cried and pleaded for help, the doctor reached back and pulled out my epidural and had Nick rub my back while the doctors noticed Tessla needed to go to the NICU. It would be a long and painful journey in and out of the hospitals and emergency rooms for me, while my little girl was in a different building, I was bed ridden with no answers just swollen to the point I couldn’t walk, becoming unconscious and hallucinating on the medication given to me. I was so sick and no know could figure out why… it was so bizarre. Only if I knew back then what I know now. I was extremely malnourished and left to live a life that was so hard to cope with especially with a newborn. I was having horrible panic-attacks and sleep deprivation beyond normal new motherhood. I was mental. I didn’t reach out for help… I just went with the motions…. It was a nightmare. I had lost feeling and muscle control in my hands after and saw a physical therapist but it didn’t work (I still live with this). Than four months later I was pregnant again. YUP! 2 pink lines and another girl on the way my body was dead. I honestly know I am standing here by the grace of God. After the nightmare of delivery experience I had with Tessla, I decided I would go completely natural with Adaline. It was a smooth sailing experience besides her pooping inside me before I pushed (Ya that’s a thing). My depression came back and I decided this time I would reach out to my doctor because I was afraid I was going to take my life. She advised me this was postpartum depression and put me on an antidepressant. I absolutely hated the idea of taking medication but my girls were more important than my pride. I started to feel better but the brain fog and slurring/ losing my words became worse and worse. Everyone called it Mom brain. I went with it. I was still complaining of never feeling well and when I would breastfeed I felt so incredibly ill and dizzy, but I kept hearing in my head “breast is best” I was so full of emotions but put myself on the back burner. I had two babies to take care of and a husband that was called on a mission 8 days after giving birth to Adaline for close to 11 months. I had no time to feel what I was feeling or think twice about me body.

 

As the years went on I was still “sick” all the time. A few of my close friends knew my complaints and Nick would encourage me to go to a doctor but I felt trapped and couldn’t explain myself without feeling crazy and I didn’t want to be labeled as a mental patient or put on another antidepressant.

I just lived in my “normal” ill state. The diarrhea was so bad. The stomach pain and the migraines were off the charts painful. I just thought this was life. Then one day I was at in n out. I ordered the usual double double grilled onions with fries and a strawberry milkshake… but this time having awareness to my new mom bod I thought I better get that protein style aka lettuce wrapped (no bun). Something incredible happened that day. I ate in n out and did not feel like I was going to die of pain and get a hot flash or vomit. What was this and why! No freaking way I thought back to the bun. Did a bun really make all the difference, a freaking bun?!?! I continued to test this method of awesomeness and started to reach for GF (gluten-free) items. I was feeling better not healed but better…. Then the symptoms got worse and I thought well maybe it's not the gluten so I continued to eat it. Again felt worse and gave up a little inside.

 

When we decided to move to AZ I was thrilled at a new opportunity to rebuild myself. I was working so hard on self-development and creating a support group and trying to work out again, I thought this move I will take as a lifestyle change and heal my mind and body. The process of getting here wasn’t glamorous living at both Nick and my parents house I ate what was quick and snacked a lot. I was depressed, sick and losing my mind. A few months later and the girls and I were settled in our new little home and my friend had come out with being diagnosed with Celiac Disease. “There is that word again”, I thought to myself and after hearing it had run in my family… I decided to find a great doctor and demand to be tested. He was so thorough, and I ended up needing a referral to a neurologist and cardiologist. My hands and irregular heartbeat were very concerning to him. After the really long blood work accompanied by my spirited daughters I felt super woosy and just wanted to go home and sleep. Did I ever mention that I suffered from extreme fatigue and joint pain all the time, even all the way back to high school... I waited to hear back from the doctor in hopes it was negative and I didn’t need to change my entire already hectic life. Being a “single” mom while Nick is still stationed in California was hard enough.

The day came. I rallied up the kids and waited what felt like forever… not even worried about myself just wanted to get the kids out of a “boring” doctors office. The doctor came in and started to talking to me very casually. I thought oh good… you would think he would have lead with…”hey you have a severe autoimmune disease.” Nope we chatted then BOOM like a bomb he dropped “you have really severe Celiac you need to stop eating gluten, your numbers are off the charts” and carried on saying other things that my mind couldn’t process while holding a frustrated toddler in my arms. “I’m sorry what?!” He stopped and his two assistants looked at me like this poor girl. Again I won’t forget the way that made me feel. “I’m sorry… are we taking like don’t eat bread…. Or are we talking needing to buy a whole new kitchen.?!?!?!” I was so naive to the disease at the time that’s all that could come out. “He stated again you have very severe celiac and said my body was completely malnourished and I need to start taking supplements immediately.” He recommended B-12 shots that the nurse could give me immediately and walked out the room. I was so blown away by what I was hearing the nurse could see it on my face as my toddlers screamed around me. She quickly handed me 3 pieces of paper with very generic celiac information.

 

I called Nick bawling and frustrated I almost hit a lady walking across the street because I couldn’t see the stop sign behind my tears. My life changed forever in a 45 minute appointment. My mind raced, as I got home feeling unsafe in my home. All of a sudden it was like I had Gluten Super vision and it was everywhere I looked. I told Nick what needed to happen. He took leave and we conquered the exhausting, mentally draining task of de-glutening our home. Do you know gluten protein is like glue nearly impossible to rid of certain surfaces like scrapped plastic and non-stick coating. It lives in the cracks and crevasses. Behind the handle on the refrigerator and the lid of a trashcan. It was daunting. To look over and seeing all my kids toys covered in ego and cracker crumbs I bawled and bawled. Dishes and memories from when we first got married could no longer be in my home. It was a grieving process. I am so blessed that our tax return came in the same month as my diagnoses or lord knows what we would have done. We were financially, emotionally struggling. I had to load up my car with all the groceries I had spent hours at Costco picking out and drive back out of town with the girls to return and re grocery shop. I was humiliated but relieved on their return policy. Reading labels becomes your secret talent when you have celiac. I researched like a mad women! Sadly, I have friends with autoimmune diseases and they were able to remind and educate me that gluten is hidden in everything. Like soy sauces, massage oils, shampoos, makeup, sunscreen… you name it and its probably in there. I was overwhelmed. Its a one and done diagnoses. You can cheat you can’t say oh just this once. One tiny little crumb could have my body attacking itself for up to two months and I was just beginning the “detox” stage. My body is losing its mind and I am struggling really bad. My chest is always tight like I can’t breathe and the headaches started to creep back in. The feeling in my hands is getting worse. The other day I was holding a bowl of cereal and the next thing I knew it was flying out of my hands, and I was soaked in sticky milk crying my eyes out.

For those of you that think you stop consuming gluten and you are fine. Nope. Here is what I have learned and why I gave you a little backstory into my life.

 

Your gut and you mind are connected. Living with Celiac for as long as I have has my small intestine is marked at Marsh 3. Meaning that Villi that is in your small intestine that should look like a shaggy carpet… yeah well mine looks like outdoor carpet. Flat. The small intestine is essential for absorbing nutrients, the production of vitamin D3, and most important, the manufacture of the neurotransmitter, serotonin. When serotonin is low, the body overproduces norepinephrine, which can cause severe anxiety, sleep issues and depression. Explaining my severe mental state, panic attacks and rash decision-making and crazy behavioral changes. The doctor had told me I was severely malnourished, which made sense why I would eat and eat and eat and never feel full. Food is my poison. Gluten is my trigger. I have been so malnourished that taking away gluten and taking vitamins and supplements isn’t enough. I have learned that my body thinks it still needs to be in attack mode and proteins in my blood look like gluten proteins and my body is freaking out on me. I have a long road ahead of me… finding a specialist, seeing the neurologist for an MRI, checking for brain damage that could be why nervous system is failing me. My cardiologist saying I have to see him in four months to talk about heart medication and annual check ups for the rest of my life. Nick and I agreed that I need to find a nutritionist. I am still learning but grateful for the doctors who care and take this seriously.

 

I know Gluten free is a fad diet, but my life is not a fad. This is serious and real and scary, if not handled properly with a very strict gluten free diet and lifestyle it can be fatal. I am on the road to recovery but it’s going to be a long road. I have to heal myself from the inside out and take every precaution along the way. I grieve the food I once love and enjoyed. I cry like a baby every time I pass chick- fil- a. I cry at the thought of not participating in family gatherings… the food we all know well at thanksgiving. I miss the carefree life of running into a restaurant for a quick bite. And the leisure of tossing whatever looked good at the grocery store in my cart. The other day I was driving and uncontrollably cried over a blooming onion from OutBack! Food being my poison is hard to accept when it was always there to comfort me and something I looked forward to as Nick and I daydreamed of all our travels. Now I am the girl calling ahead at a restaurant trying to explain cross contamination and taking to managers and chefs about the recipes and whether or not their fries are cooked in the same fryer as breaded items. It’s been emotionally exhausting. My pregnancies were so hard on me but I am so blessed that I was even able to get pregnant.

My new day to day is something new every single day… like right this moment I am on a new enzyme and when I pee it is hot! Its always something new these last couple of weeks and I am coping as I continue to seek and get answers. I look “fine” on the outside but everything in me in inflamed and in pain. My acne is hot to the touch and I feel so out of it. This is my life. This is being a celiac. To be continued in hope of answers and progress.

XO Robin

 

 

MEET MARGO

MEET MARGO