DAILY LIFE WITH CELIAC
THIS BLOG ENTRY IS AN UNEDITED WORK IN PROGRESS….
Here are the Questionnaire Answers I have received thus far in regards to the questions concerning daily life with Celiac Disease
DAILY LIFE WITH CELIAC
24. Describe how your symptoms affected your daily life and activities before diagnosis.
Didn't want to get out of bed. Always in pain. (1K-T)
I was tired very easily, had to make sure to eat enough during the day or I would get lightheaded, dizzy, and shaky. I went to the bathroom frequently, joint pain made it hard to work a lot, (2M-A)
No affect, was blissfully unaware (3K-C)
Lots of time in the bathroom. Severe incontinence forcing me to constantly drop what I’m doing to go to the bathroom. (4-LJ)
I could barely do anything. I did my best to schedule normal activities and work but sometimes both would be affected by me having to be in the bathroom. I was able to get on disability services in college to allow me time off when I was sick. Before that, I would be stuck in the bathroom and embarrassed. The same was true about social situations. (5M-S)
25. Describe how symptoms affected your functioning at school or work before diagnosis.
Didn't go to school for about 2 months because my stomach hurt so bad (1K-T)
Regularly missed school for rashes , often called off work (2M-A)
No Affect (3K-C)
School was awful. My brain was in a constant fog because of my near constant flare ups. I could hardly focus and I lost tons of weight. I was 5’ 9” and weighed 85 pounds. (4-LJ)
I did my best to power through symptoms but often it was affected. (5M-S)
26. Describe how your symptoms affected your enjoyment of leisure activities before diagnosis.
I couldn't do anything (1K-T)
Food would make me bloated and sleepy, when out drinking hands and legs would often go numb giving more anxiety (2M-A)
No Affect (3K-C)
I couldn’t enjoy anything. I couldn’t ever get too invested in any project because I might have to run to the bathroom. (4-LJ)
I would cancel and stay home. I had little or no energy. I would want to be by the bathroom. I got worse the older that I got. (5M-S)
30. Describe your activity level before and during the diagnostic process.
Very low (1K-T)
Been consitstantly low. Always been very tired and slow, never a very active person (2M-A)
Pretty active. Played softball and running. (3K-C)
Very little, I had no energy to do anything but play on my laptop. (4-LJ)
I love being active. I tried to be on many sports teams in high school and never could excel because of my energy level. It got worse as the years went on. It became harder to exercise. I lost a lot of weight. (5M-S)
45. How long did it take for your symptoms to improve after learning about your celiac (continuing symptoms will be discussed in another section)? Please describe your journey of healing post diagnosis.
About 2 weeks after cutting out gluten completely he was back to school (1K-H)
Took only a couple weeks, and then they plateaued, took full 2 years to finally feel normal (2M-A)
I didn’t experience symptoms until I had adhered to the GF diet for a few months. Then got sick after eating out due to cross contamination. (3K-C)
3 years. 2 of them I practically lived in the bathroom, with my tv tray and computer. I spent most of my time online because I couldn’t leave my home. The friends I made really helped me hold on. (4-LJ)
. They started to improve immediately but I still struggled for about two or three years before I was really a lot better. I had many set backs due to cross contamination. (5M-S)
63. Describe how celiac disease currently affects your daily life and activities.
Doesnt really interrupt anything unless Im hit with gluten. Then Ill take allergy medicine and just go home (2M-A)
I’m used to it. (3K-C)
I’m in some form of pain most of the time. I smoke pot to help deal with the pain. I just do my best to ignore it. (4-LJ)
I am use to having to determine what level of activities I can participate in considering pain and energy level. There have been times that it was difficult to find safe food. (5M-S)
FROM THE CELIAC JOURNEY WEBSITE
Having said that, our family has adjusted to our new normal which Leslie and Jax chronicle on Instagram @Glutenfreefinds_pa, and our son has been amazing in his adaptability. Until such time as other treatments and a cure are found, we hope others will check their food privilege and understand that reasonable, common sense and low impact accommodations foster inclusion to help those with Celiac Disease and food allergies, especially children, safely and successfully navigate a gluten filled world. (Bari, The Celiac Journey Feb 2021)
64. Describe how celiac disease currently affects your functioning at school or work.
Doesnt interrupt too much anymore (2M-A)
I work from home so my usual day-to-day is not affected (3K-C)
Luckily my work is very understanding and accommodating of my illnesses. I feel very blessed for that, it’s hard to find. (4-LJ)
In the past, I would have a hard time having to be in the bathroom a lot. I am lucky that my current boss is understanding of my celiac and understands if I get contaminated I might have to call out that day. When I was very sick in school (college and grad school), I had allowances for absences because I was registered with disability services. (5M-S)
65. Describe how celiac disease currently affects your enjoyment of leisure activities.
Doesnt get in the way, typically just bring my own things and im good (2M-A)
It really doesn’t (3K-C)
Not too badly. Sometimes I have to cancel plans due to feeling sick, but that’s not often anymore. (4-LJ)
Worrying about whether my stomach will act up or having to figure out food is an added stressor of celiac. (5M-S)