DIAGNOSIS & COINCIDING CONDITIONS
THIS BLOG ENTRY IS AN UNEDITED WORK IN PROGRESS….
These are the questionnaire results in regards to diagnosis & coinciding conditions
4. When did you start experiencing symptoms?
12 (1K-T)
Symptoms were showing up as an infant, but never were explained or tested, dismissed as sensitive skin (2M-A)
I was asymptomatic at the time of my diagnosis, but struggled with stomach pain and diarrhea as a child (3K-C)
14 years old, but more likely developed at 12, 14 was just when it became a problem. (4-LJ)
When I was about 7 years old. (5M-S)
6. When did you begin pursuing a solution for your symptoms?
2 months after not being able to go to school due to stomach aches. Primary couldn't figure it out, so we went to GI (1K-T)
“6 months after having covid symptoms got so bad they werent ignorable anymore” (2M-A)
After I was diagnosed, I was told to meet with a nutritionist to learn about the gluten free diet. (3K-C)
14 years old, went to see a general physician about my sudden stomach pain and incontinence and theysuggested I had Celiac discease because I already had type 1 diabetes and it was common to develop (4-LJ)
I tried to alert family when I was growing up. I especially sought help in high school but no one listened to me. I kept trying throughout college and grad school. (5M-S)
7. How long did it take you to get diagnosed after beginning the pursuit of DX of symptoms?
2 months (1K-T)
“Never got an official diagnoses, was lacking insurance and couldnt afford testing, so along with information from my dad (diagnosed with cancer from his celiac) I did an elimination diet to see if there would be changes.” (2M-A)
As a type 1 diabetic, I was tested as a part of my routine blood work and told I had celiac disease. (3K-C)
Not long as I stated above. I immediately went to get a colonoscopy to confirm it was Celiac. I was placedon the gluten free diet from then on. (4-LJ)
From time of symptom onset 23 years and from the time I started pursuing because I was old enough to be able to, about 14 years. (5M-S)
8. How many different doctors did you see before getting a correct diagnosis?
2 (1K-T)
None (as a child many different doctors but never a diagnoses or test) (2M-A)
1 (3K-C)
Just two. It was a really simple process. (4-LJ)
At least 10 (5M-S)
9. How many times did you go to the ER before getting diagnosed?
0 (1K-T)
Had been for many spontanious hives as a child, and various other unexplainable things, like menstrual cycle going on for too long, problem was never found (2M-A)
None (3K-C)
Several times due to my diabetes, but not really for Celiac. (4-LJ)
4 (5M-S)
10. How many times were you hospitalized before you were diagnosed?
0 (1K-T)
None was always sent home (2M-A)
None (3K-C)
Just for my diabetes. (4-LJ)
4 for surgeries (5M-S)
11. What tests were preformed to diagnose your celiac disease?
EDG and colonoscopy (1K-T)
“I did an elinimation diet, 2 weeks after having cut gluten completely, broke out in a large rash under my chin after trying to sneak gluten” (2M-A)
Was positively identified via routine blood work, then a endoscopy to confirm damage to villae (3K-C)
Just a colonoscopy. The damage in my intestines confirmed Celiac. (4-LJ)
Blood work was done but was DX at first as having IBS. Then an actual DX of endometriosis delayed my DX as I have both conditions. Many ultrasounds were also preformed. Finally an endoscopy and colonoscopy as well as a pill camera were done. Other swallowing tests and barium contrasted imaging were preformed. (5M-S)
15. Did you have doctors that misdiagnosed your celiac as another ailment? Please expand on your experience.
They thought IBS at first due to family history (1K-T)
As a child was told I just had sensitive skin and needed to eat more bread and potatoes to gain weight. (2M-A)
No (3K-C)
No, they were very swift and accurate in their diagnosis. (4-LJ)
Yes, multiple other ailments. IBS and also my endometriosis were assumed to be causing symptoms. (5M-S)
16. What sort of symptoms did you experience prior to diagnosis?
Horrible stomach cramping, weight gain, bloating (1K-T)
Dermatitis rashes, lightheadedness, anxiety, acne, acid reflux, bloating, joint pain, bad breath, receding gums, low iron, sciatica nerve pain, (2M-A)
None (3K-C)
Bloating, nausea, diarrhea, intense cramping, mucus in stool, lots of gas. (4-LJ)
Terrible diarrhea, cold sweats, passing out, vomiting, shaking, terrible stomach pain, low blood pressure, low blood sugar, body aches, headache, bloating, vitamin deficiency, weight loss, hair falling out, itchy rashes (5M-S)
17. Did your symptoms become progressively worse over time before diagnosis?
Yes (1K-T)
Started off very bad as a baby and small child, eventually tapered off and unnoticeable, then worse and reverted back to the same symptoms as a child but worse after covid. (2M-A)
No (3K-C)
Yes. We estimate it started when I was about 12 based on the damage in my gut, the symptoms just weren’t noticeable enough. My villi were almost completely wiped out according to the colonoscopy. (4-LJ)
Absolutely, it is much worse over the years. Even after DX, I have become more sensitive to trace gluten. (5M-S)
COINCIDING HEALTH CONDITIONS
20. What other health conditions do you have?
Lactose Intolerance (1K-T)
Psoriasis (2M-A)
Type 1 Diabetes, Hypothyroidism (3K-C)
Type 1 diabetes and gastroparesis. (4-LJ)
Hypothyroidism (autoimmune), Interstitial Cystitis (auto-immune bladder disease), endometriosis, lupus, parathyroid adenoma (5M-S)
21. What of these conditions are specifically to your knowledge ones that often coincide with the presence of celiac disease?
Lactose Intolerance (1K-T)
Psoriasis (2M-A)
Both (Type 1 diabetes and hypothyroidism) (3K-C)
Diabetes for sure, I’m not sure if the Celiac influenced the gastroparesis or not. (4-LJ)
All of them Hypothyroidism (autoimmune), Interstitial Cystitis (auto-immune bladder disease), endometriosis, lupus, parathyroid adenoma (5M-S)
22. Which of these conditions were diagnosed before your celiac diagnosis?
Lactose Intolerance (1K-T)
Psoriasis (2M-A)
T1D (2004), Hypothyroidism (2007), Celiac (2009) (3K-C)
I was diagnosed with diabetes when I was 11, the day before Halloween. (4-LJ)
Hypothyroidism (autoimmune), Interstitial Cystitis (auto-immune bladder disease), endometriosis, lupus, parathyroid adenoma
23. What coinciding health conditions were diagnosed after your celiac diagnosis? Describe how you felt before diagnosis about your health.
None (1K-H)
None so far (potentially adhd and autsim, but testing is needed.), also showing signs of premature menopause but testing is needed in case its something else.
I spent my entire life very anxious, knowing something was wrong with me but never able to figure it out and told over and over again by doctors im healthy and fine (2M-A)
Thankfully nothing since (3K-C)
Like I said, maybe the gastroparesis. It took me years to recover and lots of doctors and medications before I found the right kinda meds and diet. I felt awful all the time, constantly in pain. I smoked cigarettes just to try and settle my stomach, I was that desperate. (4-LJ)
Interstitial cystitis (same time), parathyroid tumor, lupus (5M-S)
27. Describe how your symptoms affected your personal and familial relationships before diagnosis.
Made fun of for regular rashes and always eating, never gaining weight (2M-A)
No affect (3K-C)
Nothing really changed, other than I was drained and depressed. (4-LJ)
It affected it a lot. Family never believed that I was really as sick as I was and were completely unsympathetic and unhelpful. (5M-S)