Pre-Diagnosis Dr Experiences/Tests

[Jane87]

Thank you for all the feedback so far guys! ❤
I finally had my initial Dr appointment this afternoon. I walked in and said I'd like to be tested for DH/Coeliac. He took a look at my pictures (elbows, fingers, back), I gave him a 30 second outline of family history (various autoimmune incl. Crohn's, Hypothyroidism, Lupus, Gluten Intolerance etc). I didn't have to say anything else before he was booking me in for bloods for Coeliac & Hashimotos Thyroiditis. It was all over in 5 minutes and my blood test appointment is on 2nd Jan. I was expecting to be told about psoriasis & eczema etc etc and fobbed off but he just offered to book bloods straight away.  
I'm a bit surprised! Expected harder work. Almost seems too good to be true... I have no active lesions right now (yey but annoying timing) so can't biopsy. Anyone else care to share their experiences of trying to get diagnosed?

[vgoebel]

I too am in the process of getting diagnosed.  I do not have classical symptoms, so it was a bit of a surprise to me.  Over the last 8 months, I have been sick a lot.  It seems as though everytime I get my period it completely wipes me out and I get worn down and sick.  A couple of months ago, I began getting dizzy and felt tired all of the time.  Napping in the middle of the day (not like me at all). I was losing weight, but not significantly.   I have since gained and yo-yo back and forth.  Which is strange for such a short time frame.  Went to the doctor and thought for sure, I must be anemic (because of the exhaustion with my period..etc).   They checked that and I had a lot of blood work done.  Everything had come back normal.  He thought that my thyroid was slightly swollen and had me get an ultrasound of the thyroid.  Came back normal.  He then sent me to an Internal meds doc.  I was also having some discomfort in my left side of my chest into my back. So she ordered a chest CT scan and a stress test.  All came back normal.  Very frustrated, I thought I was crazy and needed to excercise more or something.   Then a week later they called and said more bloodwork had come back and it was positive for Celiac disease.  I had the Celiac panel done and only the DGP IgA came back positive.  I am now scheduled for a endoscopy in a week from now.  I am not sure what made her go down the path of checking for Celiac disease, but at my appointment with her she asked how my stools had been.  I brushed it off saying since I had my last child (18 months ago) that I seem to have trouble with dairy.  Gas cramps and occasionally diarrhea.  So I had reduced the amount of dairy I consume.  Maybe that clued her in.  I am hoping this  helps with a diagnosis for my 11 year old daughter.  She is a tiny little girl for her age and has terrible problems with canker sores and occasionally vomiting without any other explanations.   She has seen a pediatric GI specialist and has had a scope and colonoscopy done.  All were normal a couple of years ago, but they never did bloodwork.  There was no family history at that time and I don't think the blood tests are as accurate for kids.  I took her off of gluten for a year and she grew, put on weight, got so much stronger, and quit throwing up completely.   Since finding out about my blood test, I have put her back on gluten in order to get her a diagnosis.  She is handling it, just ok. She has had a few days of nausea, so hopefully we can get this all figured out soon.  Hoping my scope comes back with a clear cut diagnosis.  Then we will go back to the pediatric GI (who really was a great doc) with my diagnosis.   

 

Long winded post, so sorry.  Good luck to you and hoping you have news on your bloodwork quickly. 

[Barbie Wickham]

Wishing you and your daughter a speedy recovery. I think going gluten-free and feeling better is a good sign in which way to go. For all the negative test results I received, the full Gluten Panel bloodwork finally showed I was sick from gluten and with my family history of Celiac Disease it all made sense. The biggest proof for me though was my body responding so quickly to a gluten-free diet and watching the rashes and blisters fade away and no new ones popping up. I did choose to take a low dose of Dapsone, 25mg a day, and I feel it has given me a jumpstart to help my damaged immune system fight the existing deposits in my body. Best of all to you and your daughter!