I feel like all the general doctors I have gone to pretty much know little to nothing about this disease. I had to self diagnose and demand a blood test. When it came back positive the general doctor just said to start a gluten-free diet. My blood test was extremely high and I have inflammatory arthritis so I didn't want to mess around. I called the Mayo Clinic and got an appointment with the best doctor ever! He immediately scheduled a biopsy, bone density scan and did all sorts of blood work and found my B-12 levels to be alarmingly low. If I would have stuck with the general doctor's advice this would never have been found and I could have ended up with severe neurological damage.
I haven't been back to a general doctor yet and I won't be back to my previous 2. My neighbor is a nurse so I asked her for some references of open minded doctors who are into whole body health. She gave me some places to start. I am also going to look online and see if I can find references of a good doctor locally.
If you are diagnosed by a blood test to have Celiac you need to see a GI doctor to order all the correct tests. There are so many other disorders that go along with this disease especially with the absorption of vitamins.
Don't give up if you don't like how your doctor treats you. Ask neighbors, friends, relatives if they can recommend someone. Easier said than done because I haven't found one yet but I am going to keep trying!
@luvstoeat - I like the poison quote, I will use that one!
My immediate family has been pretty supportive but I haven't had much contact with others since my recent diagnosis. I have been trying to think of things to say like "Celiac Disease is an auto immune disorder that is triggered with the smallest amount of gluten to attack my body."
It also helped that my mom came with me to my doctor and the dietitian. She was shocked at the things she learned and is excited to try gluten-free cooking for me.
I am sorry you are feeling down in the dumps. I am recently diagnosed so we are on opposites ends but I am looking forward to the gluten free diet.
Maybe you could start learning to cook some awesome food for your friends. What can be less boring then grilled steaks with some spices and a side of baked potatoes? I made baby back ribs last night with Ken Davis BBQ. Salmon? Grilled Chicken? I am not really thinking of making the pre-made gluten-free food part of my diet. I am thinking of more of a fresh food diet. For snacks there's nuts, hard boiled eggs and Cheetos's (not fresh food but... nothing boring about Cheetos's!!!)
I agree giving up drinking for a month or 2 might help get you out of your funk, it can be a major depressive. If you are using it to make yourself feel better, it's not going to work.
I totally understand your emotions. I just got my biopsy results back yesterday with flat villi. Although I probably have had this for 20 years, I asked my doctor about it in 2008. She practically laughed at me and said I did know what I was talking about and to quit reading the internet. Now, at 43 I have had severe permanent damage due to arthritis and will probably have to be on B-12 shots for years, maybe the rest of my life.
I cried when I found out and feel angry sometimes when I think about that doctor. I have contemplated writing her a letter to at least let her know how common celiac can be.
As for the kids, I have a 6 and 9 year old. I am also terrified to get them tested but I know I have to for their health and my peace of mind. They have pizza parties at school and kids are always bringing cake or cupcakes on their birthdays. What if they can never be a part of that again? I will deal with it and I know their small school will be supportive but the though makes me want to cry.
I think the best thing to do is start finding good foods, keep reading, and find support here and through family and friends. Now that we have the knowledge to stop poisoning ourselves with food we can get on with life and start feeling better!