News: Celiac Disease - Pre-Diagnosis, Testing & Symptoms Latest Topics: HELP (it has been a loooong 5 years)

[Scott Adams]

Hey there everybody. I was hoping to get see if anyone had any similar story to what's been going on. Sorry for the long post.

The end of 2011, I got very sick with a sinus infection that turned into pneumonia and was put on methylprednisolone. I had a horrible reaction to it. It felt like I was being stabbed all over with a needle randomly. I've got sicker and sicker since then. We always said it was a systematic thing because I would roll through alternating symptoms involving all different parts of my body. In the end of 2012, my primary Doctor ran a celiac panel and it came back with positive markers. Gliadin IgA and tTg IgA were normal. Gliadin IgG came back as 88 and tTg IgG was 113 when they both should have been under 15. The gastroenterologist said the biopsy came back normal. For the next three years things got horrible. We saw every doctor we could. I was throwing up every meal I ate between 10-30 minutes. I finally at the beginning of 2015 being at my wits end, saw a very well respected holistic Doctor who took blood and stool tests and told me I absolutely had celiac disease. I've been gluten-free for a year and a half and have been much better. I'm no longer throwing up but I'm still having pretty horrible symptoms. For insurance reasons and the fact that I'm 18 with a supposed life long disease, I would really like to have a MD diagnose it. I saw a gastroenterologist last week who says it's slightly possible the biopsy was wrong but he wants to leave it at non-celiac gluten sensitivity.  He says the markers that were positive basically indicate nothing and they don't use those. Why would I of been referred to a gastroenterologist and gone through that then? Why does the medical community even use them? So many things made sense with the celiac diagnosis but I have multiple doctors who don't was to put that label on it.  I've seen two gastroenterologists, gynecologist, two ENTs, a urologist, two allergists, a neurologist (several years). I've had every test done, so many blood tests, been in the ER, was in the hospital for 4 days. Here are some of my main symptoms over the years (only about half still remain).

SEVERE period cramps, throwing up all meals, heartburn/GERD, frequent urination, stabbing pains, ulcers, SEVERE fatigue, hives, bloating, multiple drug allergies, multiple food allergies, sleeping problems, nausea, hard time focusing, skin rashes, stomach pain after eating, migraines, sinus infections on a monthly basis, ear pain, itchy ears, dandruff, itchy skin, losing hair easily, bone pain, general malaise.

I'm 18 and am exhausted if I'm out of the house for two hours. This started when I was 13. I missed my entire high school years. I really need to get this figured out and move on with my life. Any help would be much appreciated.

 Much thanks, 

Alyssa

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