samantha79's Blog

Hi all,

Celiac.com Sponsor (A13):
I'm only really doing this so that i can vent what has been building up for quite some time now!!!!

I have been slow and lame, it has taken me 4 years to realise that when it comes to doctors it is either really hard or basically impossible to find one that actually listens to their patients. It is my own personal opinion that they are just there to say hi, put things in your ears, check your throat, say it's all in your head, but, have this script anyway!!

This is the treatment i received with myself and several doctors when i was trying to find out why i was feeling worse by the day. It took low iron tests, dehydration, panic attack symptoms, reflux, headaches, tiredness and hysterectomy and all the doctors i saw still said it was either depression or that i suffered from anxiety. One doctors idea was to put me on anti depressants which ended in me having a reaction to them, her idea was to give me another form of the tablet, i refused of course and never saw her again! Finally, I found a doctor who really listened. After i told them everything that i suffer from every day and even explained for the umpteenth time that these symptoms got worse with certain foods (pizza, pasta and sausages and some sauces) they decided that they would do a full coeliac screen on me. At this point i had never heard of this disease and panic set in! But, the results came in and all showed normal. So, the what is wrong with me set in again Lucky for me the new doctor wasn't happy to leave it there and decided that she was going to send me to a gastroenterologist anyway to have them check for ulcers instead. On first appointment with the gastro doc he did an endoscope, told me that i had no ulcers, but, that he took some biopsies anyway to be on the safe side but that everything appeared to be normal from what he could see. Lucky for me that he was very picky and of a high standard, his off chance biopsy to cover all possible bases gave me the answer that i had been seeking for 3 years. I was diagnosed as a Coeliac!!! Of course, this scared me i had no idea what to expect, so i got online a year ago and found this website. I was in heaven i found everything i could possibly want to know!

BUT, then the fun began. Doc decides that my 4 children should be tested for coeliac. All blood screens came back normal, but they covered all bases and whole family was gene tested. I carry both genes..DQ2 and DQ8.

Each of my children carry atleast 1 of the genes. And this is were the fun begins!!

I have now been running back and forth to doctors and paeds with my 7 yr old daughter! She has for the past 20 months complained constantly of stomach pains, bowel problems, headaches and is easily irritated. Again, her bloods came back normal. I have even explained to doctors that i would not wish for one of my kids to have the diet requirement that i do, but, i need an answer, so in 2 months she is finally going to she a gastroenterologist! It has taken a move to another state to get a paed doc that will listen to me. Even though my daughters blood work up is negetive he still recommends that the gastro do biopsies, and has used my past results of false negatives as his back up, so in 2 months you will either read another of my blogs, i will either be ranting again that i at my wit' s end or that i'm celebrating that i finally have an answer.