Hey y'all! This is my first post on any forum, but I have came to my last straw, so I decided I may be able to find some answers from some of you who are diagnosed with Celiac or who were once misdiagnosed. Sorry in advance, this might be lengthy.
I was diagnosed with IBS in middle school, I am now 21 years old. I do not remember IBS ever affecting me to the extent it is now. I was a soccer player for 17 years, very active, raised on whole grains and healthy food, etc. In college I began to run marathons - almost qualifying for Boston after my first marathon. However, 2013, that is when my "IBS" started to go downhill pretty bad.
Thanksgiving 2013: I got so incredibly sick immediately after eating my meal. My stomach was so distended I looked nearly 6 months pregnant if not more... I could not lay down on my stomach, I could not touch it, I was bawling my eyes out and my mom was contemplating if I should goto the ER or not. I did not goto the ER because everyone knows that's expensive as heck and half the time you get stuck with a doctor who is arrogant, or maybe that's just my luck. However, about a week and 1/2 later, I was driving to the gym and had the most intense pains in my stomach just like Thanksgiving. I could not continue driving and had to put my emergency lights on to speed home. I was then taken to the ER and put on IV's, etc. The doctor was VERY arrogant and I remember my mom was going off on her because she was saying I just had a "belly ache." Bull. We did a CT scan and come to find out my small intestines were inflamed along with my pancreas. My grandmother then was able to get me in with her GI doctor stat instead of me having to wait an entire month, thank God.
A few days after this ER visit... I got a rash all over the my thighs that looked like bug bites. Let me add that I NEVER get rashes and it was not chicken pox or shingles. I took pictures of it and made sure to show the gastroenterologist at my appt. When I explained my symptoms and the ER visit, etc. I also showed him the pictures of the rash. I asked him if it could be Dermatitis Herpetiformis. He literally didn't even EXAMINE the picture, maybe looked at it for 2 seconds and disagreed with my opinion. We did a blood test to see if I had Celiac and I tested negative. So, we thought about Crohn's being a possibility.
Symptoms:
- Consistent and explosive diarrhea every morning, sometimes having to RUN to the bathroom. Will go 3-6 times in an hour and a half.
- Or I have constipation. Never a normal bowel movement, basically.
- Some stool will be floating in the toilet, some food not digested will show also.
- FATIGUE OUT OF THIS WORLD causing me to put running on hold and is affecting my every day life.
- Joint pain (more recent) mostly in my knees and ankles.
- Irritability and depression (when feeling bad).
- Stomach cramping, trapped gas or excessive gas which is very stinky, major bloating every day.
- Headaches
- Dry skin, brittle nails, brittle hair
- Circles under my eyes
July 2014: After months of stomach issues worsening, I finally got a colonoscopy and endoscopy by that ridiculous GI doctor. Did more blood work, celiac was negative, but my lipase levels (pancreas) were still slightly elevated - meaning I wasn't breaking down carbs and fat correctly.. Despite my cries of pain with my stomach and the inflammation of my small intestines, SOMEHOW both scopes showed A PERFECTLY FINE STOMACH. There is NO way.... I don't think he took more than one biopsy, so... We left very disappointed and had no answers. He told me to "eat more fiber." I eat a very healthy diet full of fiber... He said my intestines then were not inflamed. But then, I was not eating a diet high in gluten.
February 2015: the same dang rash popped up on my legs but even WORSE and it lasted for about 1-2 hours and was itching like CRAZY. Would come back every night for about 3-4 nights. I had many more pictures of this rash that showed the severity of it, but sadly only could find these two pictures. --- YES I KNOW THIS PICTURE IS QUITE REVEALING BUT IT'S THE BEST SHOT I HAVE OF IT WHEN IT HAPPENED. (SORRY). The rash was also on my forearms, but mostly covering my thighs and bottom.
Currently: I have woken up twice in the middle of the night (back to back nights) with the most NAUSEOUS feeling and in such pain I have to curl up in a ball. My pain would be lower belly and extremely painful. My fatigue is CONTINUOUSLY getting worse and worse to the point where I'm literally about to give up... My gas is EXCESSIVE and stinks terribly. I have some poop that floats in the toilet. Still have diarrhea EVERY time I goto the bathroom. If I don't goto the bathroom in the morning, I'm constipated all day long and will barely pass gas if severely constipated. My head is throbbing, my joints are hurting more and more each day and I am constantly bloated... I am so miserable and have had no answers, I am starting to lose hope that I will ever feel basically alive again..
I really need some input on this whole situation... I haven't been tested for Celiac since that winter/last summer, but I have heard of many people getting negative blood tests and a positive stool sample or positive biopsies... I have also heard of people being misdiagnosed for years who have had IBS but in reality it was Celiac or it eventually turned into Celiac.
Thanks in advance to anyone who is able to help me out for the time being... Sorry again for the picture, but I'm desperate.
Mary