*Continuance of “My Story” starting with Blog #1: When your life flashes before your eyes in a flood gate of memories…
There were times when I had gone to Laurie, my monthly Massage Therapist in Minneapolis, when I was really sick. At those times, I can honestly say the 2 hours of relief that I got from the massage felt like a vacation. After receiving a massage, I would be able to sleep deeply through the night, waking refreshed the next morning. For two years, sleep had been a constant battle. Receiving a massage helped me to sleep better for one awesome night!
As I’d started the drive home from my monthly massage, I’d brought supper with from home. Halfway through eating, my stomach started feeling bad. I quit eating. My upset stomach grew worse as the drive continued. Once home at 9:30pm, I unpacked boughten groceries, whole foods, and then showered. Afterwards, I stretched downstairs on the floor very briefly, and then crawled into bed. The left side of my abdomen hurt deep inside, so I laid on my left side with my legs stretched out. I hoped that my abdomen would feel better with my legs stretched out in order to loosen my abdominal muscles. It didn’t feel better, so after a while I went between laying on my left side being stretched out, to curled into the fetal position. I drifted off into a restless sleep.
I awakened in the wee midnight hours throwing the covers off my burning hot body. I was drenched in sweat. My abdomen felt like it was going to explode. I whimpered in pain. My head was pounding again. I could literally feel the “thudding” in my head. I was still in the fetal position, laying on my left side. I was nauseated, dizzy, feeling very ill. I attempted to straighten out one leg. Pain ripped through my abdomen and I cried out. I didn’t sob, as to not make the pain any worse, but instead let tears flow down my face, freely. After a length of time my abdomen calmed, seemingly feeling a little better.
Suddenly, I felt the urge to have a bowel movement. I knew I needed to get out of bed and into the bathroom, quickly. I gently turned from my left side onto my back. I got my feet over the side of the bed while Bun-Bun, my cat, readjusted his position. I had nudged him while moving my foot. He looked at me and started purring. I had sweat dripping down my back, chest, and forehead, my skin moist from perspiring. I sat up in bed. My head was spinning. I was dizzy. I sat on the side of the bed a few minutes. I could feel the pain increasing. I needed to get to the bathroom because if I didn’t go now, the pain would only intensify and leave me immobile in bed. I pushed myself from bed, grabbing the walls to keep myself from falling. Limping along, I grabbed my abdomen as red-hot electrifying pain dropped me to my knees. I nearly vomited.
After the pain passed, I made it to the bathroom just in time. Explosive diarrhea, and lots of it. I felt better after the release. However, I then felt like I was going to vomit. Another wave of diarrhea. I flushed the toilet. Knowing I was going to vomit, I grabbed the garbage can that was sitting beside me and stuck my head in it. I vomited in a couple waves. As the stench penetrate my nostrils, my stomach continued to wretch until there was nothing left. Immediately I felt relief. I still had abdominal pain, but no more nausea. I was no longer sweating. Instead, I was ice cold and physically exhausted. My body felt beaten. I was weak, and tired. I cleaned the toilet and garbage can. The smell made my stomach wretch again, but nothing came up.
I washed my hands and face, brushed my teeth, walked back to my bedroom and changed clothes, then crawled into bed again. I laid on my left side in the fetal position trying to stay warm. Soon, I got out of bed and put a pair of socks on, then turned on my heating blanket. I had a few more abdominal pains as I laid back down. I prayed while the pain ripped through my abdomen into my back. I reached for the dull achy burning spot in my back that I could also feel deep underneath my ribs. I tried to reach into it, to access it to bring relief. I couldn’t reach deep enough into my body to reach the firey hot burning spot. Exhausted, I just laid there enduring the painful jabs through my abdomen and back. The pain lasted another hour and a half. I was totally worn out and couldn’t keep my eyes open. As the jabs faded, I drifted off into another restless sleep.
The next morning I felt terrible. The headache was back and thudding again. My abdomen was still having some ripping pain, but was otherwise my “normal” dull, achy, burning pain. I was pale and felt like someone had ran me over with a truck and then backed over me again. I had no energy. My torso was sore, my stomach was raw from the early morning vomiting and severe pain, and I was still dizzy and nauseated. This was a classic reaction for me to a Gluten exposure. I laid in bed thinking, I must have been exposed to Gluten. I knew that I hadn’t eaten anything on Friday or Saturday that had come in contact with Gluten. What could it have been, I thought? Then it hit me, the “Gluten Free” Eye Drops at my eye examination on Friday.
“You have GOT to be kidding me!” I murmured aloud.
Troy, my brother, was stirring in his bedroom next to mine. When I heard him walk by my door a few minutes later, I weakly asked him, “Please, go get Mom?”
“Sure. Are you not feeling okay?” He questioned, his voice full of concern.
“I feel absolutely horrible. Thank you for asking.” I attempted a smile so he would know I was “okay”.
Within minutes Mom was downstairs in my room. “What’s going on Kelly?” She inquired.
“I feel terrible,” filling her in on the early morning hours’ pain and vomiting. We talked a little while and then I weakly got out of bed. The room spun, so it took me a while to change clothes. I was able to walk up the stairs, greeting the friend and her toddler whom had been staying with us that weekend. They were going to be leaving in a couple hours. I felt miserable from my pain. I wished they didn’t have to watch me struggle in my continued health battle.
Mom had already told Troy, Dad, and our friend what had happened. I sat on the floor and tried to enjoy their company, watching the toddler play. She giggled and laughed, warming my heart.
After the weekend guests had left, I got back down on the floor, immediately laying onto the hardwood surface. I was still having severe abdominal pain. Within a 1/2 hour the pain reduced some, so I went downstairs to lay on the carpet. It took me a couple more hours before the pain was back to my “normal.” My “normal” dull, achy pain in my left side deep underneath my ribs was tolerable. The headache still present was bothered by the brightness of sunlight coming through the glass doors. I pulled the hood of my sweatshirt over my head. My low back hurt bad, but overall I was much better. Mom said color was starting to come back into my face.
When I’m exposed to Gluten I get sick like that. At this time in my health journey, it took anywhere from 7 to 10 days to fully recover from a Gluten exposure. I’d have low back pain and a constant headache during all those days. My abdomen and gut would be in severe pain for a few days, and then the last 5 to 7 days it slowly would improve. It’s hard for me to eat or drink during this time without symptoms being jacked-up. My gut reacts to anything I eat after a Gluten exposure. From that one G. exposure, it actually took a full month in order for me to be able to eat without my body reacting harshly to whatever was being put into it, but more on that later. Times like this always set me back in my journey towards healing.
After that weekend, Monday I called the eye doctor’s office and spoke with the receptionist there, telling her what had happened.
“I will ask if he used the ‘Gluten Free’ eye drops, Kelly.” The receptionist stated. “I will call you back.”
She called back within the hour. “He used the ‘Gluten Free’ Eye drops. Are you sure you didn’t just eat something bad?”
“I’m positive.” I stated.
“You must of got a little flu bug.” She informed me.
“When I’ve been exposed to Gluten in the past, I’ve gotten this same reaction,” I said, shaking my head. “I don’t have a flu bug. I didn’t eat anything ‘bad’. Please give me the name of the eye drops that he used,” I replied with evident irritation in my voice. I was frustrated.
She provided me with the names of the two eye drops used there and we ended the call. I looked up the products, investigating the ingredients. Sure enough, even though one of the two products was labeled ‘Gluten Free,’ it had Gluten IN it. How could that be?
So what’s Gluten Free really mean? To be labeled Gluten Free, a product has to have less than 20 parts per million of Gluten in it. This DOES NOT MEAN that it doesn’t contain Gluten, only that a minimal part of the whole product has Gluten in it. The 20 parts per million rule is the magical number determined by the FDA for an ingredient to not have to be included on the products ingredient labeling list(of ANY food or drug product). It is such a small amount, seemingly, that who’d notice? For someone whom has Celiac Disease or Non-Celiac Gluten Sensitivity (NCGS), we will have an adverse reaction from 20 parts per million or even less of Gluten!
Here’s an example of living with others in your household that eat Gluten regularly. You, whom is Gluten Free or having Celiac Disease or Non-Celiac Gluten Sensitivity, are exposed to the Gluten to some degree, whether it be flour particles in the air used for baking, toasted bread crumbs on the counter, or even fragrant products being used that are floating around in the air or products put on the body that have scents. As for the food part, particles can be left behind for you, the person who is Gluten intolerant, to pick possibly up and ultimately be ingested by mistake. For me, even breathing air that has particles of flour floating in it gets a reaction started!
These days the reaction is not as severe, but there’s still a reaction. I don’t want to come into contact with particles of Gluten, but these particles can fall onto my plate, or touch my fingertips, both of which can eventually end up in my mouth. You may think it’s not a big deal. When your health is put at risk because of Gluten, it IS a big deal. Getting sick for days after coming into contact with a trace of Gluten in “Gluten Free Eye Drops” was upsetting to say the least. So much for quality assurance from the Food and Drug Administration.
For the first years of my illness with a restricted diet, breads and baked goods all containing Gluten floated throughout the air in our home, although I was not eating the bread or baked items. I had headaches most days. At that point in my life, I didn’t know any better. Once I learned more about how my health was at risk because of Gluten, I knew I would have to take precautions. It was important for me to clean an area in the kitchen before I started food prep, since there was always a possibility of Gluten crumbs remaining there. My family, whom live in the same household as I do, also learned the value of cleaning countertops once they realized the seriousness of cross-contamination and Gluten exposure for me.
People whom are allergic to Gluten, having Celiac Disease or Non-Celiac Gluten Sensitivity, can’t get cross-contamination or they will get sick. That in and of itself makes it almost impossible to eat out, the cross-contamination, or eat at other’s houses. Gluten can take days, up to months, to get out a person’s body. Each person reacts differently, some of whom will get seriously ill like me. It is important to be aware of individual’s sensitivity to Gluten, so I let people know when the need arises. That’s not often since I usually take my food with me where ever I go. Eating out gets real tricky.
Gluten Free labeling now pertains to not only foods, but almost all products. Gluten Free food labeling is VERY misunderstood. Also, a Gluten Free diet is not a fad diet, it’s a necessary lifestyle for people like me. It’s for real, and it’s my reality.