Celiac Reoccuring, Blood Test, And Other Questions

[Curious3D]

Hello everyone. I'm new to the board after recently going gluten-free and I have a few questions about my symptoms and situation.

I was diagnosed with Celiac as a child. Most of my adult life, I had little or no symptoms that I attributed to Celiac, I always just thought I had kind of a sensitive stomach. After a horrible stomach illness two years ago, I was in a constant state of dizziness with nausea. I ate very little, most of what I did eat at time contained gluten (toast, for example) because I didn't even consider that Celiac could reoccur after a trauma or illness. At that time, I didn't even know I'd had it as a little kid.

I went to the Doctor, and he suspected it was my gallbladder. One sonogram and one medium sized gallstone later, I had my gallbladder removed. My symptoms persisted. The gallbladder removal didn't make a dent in how I was feeling. Back to the Doctor, diagnosed with post-cholysystectomy syndrome (fancy way of saying something is functionally wrong with how my digestive tract processes the new bile delivery) and was put on Questran to control the diarrhea.

I felt a little better with the Questran, and it was nice to not be a complete slave to the bathroom because of the diarrhea. Still though, the dizziness persisted. I thought this was my new normal, and lived with and around it for a year and a half. My major complaint was nausea and dizziness, and a little stomach tenderness. No pain or cramping to speak of. I had kind of IBS-D like symptoms, but without pain.

Finally I got fed up. I started digging around on the internet, and I had a conversation with my Mom about my medical history. I put all my known conditions and current symptoms together and the results and answers I was getting were consistent. Celiac. My mom confirmed my diagnosis as a child and I immediately stopped eating gluten. I also started taking a B12 supplement.

The very next day I had noticeably more energy. A few days later the dizziness started to subside. A couple weeks later the dizziness was gone completely.

Ok, so that's the backstory, here's my questions for you knowledgeable folks:

1. I read that Celiac CAN re-emerge after an illness or trauma. True?

2. The dizziness - is that a common symptom of Celiac? Not just nausea, but motion-sick dizzy. Unstable dizzy. I also frequently got a weird rushing/dizzy sensation that would keep me from falling asleep - does that sound familiar to anyone?

3. I had the antibody blood test 6 weeks after going gluten-free, and it came back negative. This seems obvious to me, no gluten in my system means no antibodies, right?

4. If I'm feeling so much better gluten-free, and I was diagnosed as a child, is there any reason for me to get the biopsy?

Thanks,

Cynthia

[mushroom]

Hello and welcom to the board.

The following holds true 99.99% of the time: once a celiac, always a celiac. It is one of those diseases you don't ever 'recover' from - you just drive it into remission by starving it of the one thing it needs to flourish - gluten. Now sometimes there is a spontaneous remission in teenage / early twenties years that can make it seem like you have recovered but any kind of stress can reactivate it. With you it was aparentlly the serious stomach illness. Often it is childbirth. So to be short and sweet about it, you do not need any further diagnosis because you have already been diagnosed once. You are a celiac and should eat gluten free.

I don't know if your vertigo is associated. Others have reported dizziness. I had a rather debilitating bout of vertigo long before I was diagnosed that lasted about six months and resoslved spontaneously. And yes it would often occur when I went to bed - a positional vertigo. Perhaps someone else will chime in on this.

[Takala]

1. You've always had it, but it's now getting worse again, unless the diet is gluten free. Doctors once thought incorrectly that childhood celiac could be "outgrown." NOPE.

2. Ataxia and other neurological symptoms resembling MS can be a symptom of gluten intolerance and celiac auto immune damage. Celiac can cause brain lesions called "bright spots."

3. No gluten = no antibodies, if you're healing.

4. Not unless you feel like there's a gastro doc out there that REALLY needs your insurance money. And going off gluten screws up the results anyway.

[Curious3D]

Not unless you feel like there's a gastro doc out there that REALLY needs your insurance money.

This made me laugh. Hey, somebody's got to make those boat payments!

Thanks to you both - I appreciate the help and insights.