Questions About Diagnosis Process

[dizzyg]

Hi everyone, 

 

I am waiting for results from a second endoscopy, and was hoping that someone here might be able to answer some questions.

 

I had an endoscopy in Nov 2012, after blood tests came back negative. The report from the doc said that I had scalloping of duodenum and esophagitis but no celiac. He took two biopsies. 

 

Prior to testing, I had been diagnosed with anemia (this has been a chronic thing for me since I was a child). My ferritin was below 5 and I had hemoglobin of around 8 or 9. Felt really awful.

 

The anemia didn't get better with the iron supplement I was put on, so I was referred to gastro doctor and tested for celiac. 

 

After that, I was put on 300 mg of Feramax- after over a year, my hemoglobin was low normal, but my ferritin levels still didn't get back to normal. I was referred to a hemotologist who ordered three rounds of iv iron therapy, and was referred to a different gastroenterologist. He ordered another endoscopy. I am still waiting for the results, and am scheduled for another colonoscopy (I had one earlier with the first endoscopy). 

 

I've had on and off stomach issues forever, and dealt with depression and anxiety. I get weird joint pains that will last for a while, maybe a few months, and then go away. They can be really bad when I have them, but they aren't consistent. They show up in different joints. 

 

Recently I've started getting little red pin prick spots on my skin, and they are increasing in number. I also get really itchy on my stomach, legs and scalp. I have trouble sleeping, even though I'm tired all the time. I feel like I can't think straight. 

 

I have a subcapsular cataract in one eye (which I understand is not an age-related type of cataract). 

 

I don't want to have celiac disease, because I love to cook and bake, but part of me wants a positive diagnosis because at least then I'll know that maybe I can do something to begin to feel better. 

 

I know no one can give me a diagnosis, but does this sound like celiac to you?

 

Thanks for listening. 

[nvsmom]

It could be celiac. Those are definitely some of the symptoms.

Did you have blood tests done too? I ask because a minority of celacs have positive blood work but negative biopsies. Could that be you?

Welcome to the boards.