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PiscesTeen Diagnoses Her Illness in Science Class
Since 4th grade, Jessica Terry was living with an indeterminable stomach disease. Eight years later in a science class, Jessica diagnosed her own illness. Momlogic talked to Jessica and her mom about their journey, and how she's doing today.
When Jessica was in the 4th grade, doctors diagnosed her with an indeterminable stomach disease. This illness gave her severe stomach pain, diarrhea, and vomiting. Stress inflamed her symptoms, she was in and out of the hospital, she lost 30 pounds, and then gained 60 from the steroids she was put on. She was the butt of everyone's jokes. "People didn't even ask if something was wrong, they just made fun of me," Jessica said.
For a mom, watching her child go through not just sickness but bullying at school was awful. Jessica's mom Colleen tells us, "She would come home from middle school, having gained 30 or 40 pounds from the medicine, and her peers were ridiculing her, her coaches wouldn't play her in sports. They didn't even know what was wrong."
Cut to senior year. Jessica is taking a special science class where they'll study a specific illness for several weeks. Jessica and her team decided to study her symptoms, focusing on Crohn's disease. "My group studied the normal cells and my teacher paired us with a pathologist." Her doctor let her take her own slides to study, but Jessica didn't think she would find anything. "I just wanted to compare them with the normal cells. What I found was like a needle in a haystack."
Jessica says, "I looked at 32 tiny slides of tissue, I looked at the digestive cells. I kept searching and searching and then I found something that looked different. I sent it to a scientist, and we did Internet research comparing the picture. It was Crohn's disease."
Jessica said it wasn't that "she found it and the pathologist didn't," it was more like, "Wow, if anything, I've learned the importance of second opinions."
Now, though still experiencing bouts of extreme sickness, Jessica has hope. She has written a book for parents and kids about what it's like growing up sick -- a child version on one side of the page and an adult version on the other. It's a "you're not alone" book, says Jessica, who said being in the hospital surrounded by kids with terminal cancer gave her a sense of hope. "I never went there and didn't see a smile on their faces. They were so positive. They were like, maybe there's no tomorrow, but we can do this fun thing later today!"
Jessica is moving forward. She's off to nursing school soon and is "not scared. I want to help educate kids and their parents about how to make things better."
We have no doubt she will.
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For Pete sake! This would certainly help other families, so post the name of the book! Gimme her web site, gimme something! Don’t make me go search on “Jessica Terry” and hope I find the right “Jessica Terry” and her book.
Wow. Awesome! :)
She HAS TO be screened for Celiac Disease.
A good percentage of people with undiagnosed and therefore untreated Celiac Disease go on to develop Crohn’s Disease. It has been suspected that it takes years upon years of gluten ingestion (in individuals with both Celiac Disease and Crohn’s disease) for the Celiac Disease to eventually lead to Crohn’s Disease. Untreated Celiac Disease, therefore, can be considered the precursor to the development of Crohn’s Disease.
One article, to the best of my memory, has found 40% of patients with Crohn’s disease to have some form of intolerance to gluten.
Tissue-Transglutaminase (both IgA and IgG), Endomysial Antibody, and Anti-gliadin Antibody (both IgA and IgG) will provide enough evidence for her to determine whether the commencement of a gluten-free diet would be of any benefit (and not a waste of her time or money). She does not need a biopsy in my opinion.
The biopsy is not the golden standard. Most gastroenterologists will only take one biopsy. Six biopsies are actually needed to properly rule out Celiac Disease. Because the taking of six biopsies is too expensive, it is better to use the blood tests TTG, EMA, and AGA to screen for Celiac Disease in lieu of a biopsy.
A positive AGA by itself is a good enough indicator that the gluten-free diet may be of some benefit. It has been suspected that there are auto-antibodies other than TTG. Far too many doctors mistakenly believe that a negative TTG or EMA rules out Celiac Disease.
For example, a good percentage of patients with neurological disease will have positive AGA. In some patients with AGA positivity and TTG negativity, the introduction of the gluten free diet has stopped the worsening of neurological disease. This observance has lead some scientists to believe that there are auto-antibodies other than TTG that play a role in the auto-immune attack that takes place whenever gluten is consumed.
Just email me at yuexiang84(AT)yahoo(dot)com for more info.
Yes, study your possible food issues with a food diary.
Keep track of what you eat…everything that crosses your lips. I am allergic to lettuce, cilantro and fresh basil, but they do not show up on a food allergy test!
They don’t reach the trigger threshold by the test, but, I can eat a sliver and OMG. I discovered it by recording my food and symptoms.
They didn’t post the name of the book because it’s not DONE yet. She’s still writing it. I’d love to read it and review it on my site though! I think I have IBS.
We need more people like this girl! Its sad when Dr’s dont care enough to really find out whats wrong.