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.
Good luck and hope you feel better.
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!
I was diagnosed a little over a week ago and this weekend was the first time I've traveled and went out to eat being gluten-free. Since we drove I was able to bring a cooler full of gluten-free food but when we got there my SIL was bent on going out to eat! DH is so good, he tried to explain about Celiac and being gluten-free but that didn't go over very well. SIL thought I could just have a salad and I'd be fine. SIL wanted to bring the kids to Space Aliens for dinner. We caved and agreed to go out to eat even though I brought gluten-free brats for everyone.
The waiter was very nice, I told him no croutons, no roll, no onion rings on top of my steak. DH told him I had to be gluten-free and the waiter suggested I didn't use the spices on the steak either. I was shocked he even knew what it meant! Not thinking I ate some of the Caesar Salad, I don't know if it was gluten-free or not but I felt a little ill the next morning. I would just rather not go out to eat. We spent a small fortune and I still didn't feel very good.
The whole experience was extremely stressful. I hate inconveniencing people. My BIL thought I was nuts having to open a new butter because the used butter was full of bread crumbs. DH was my hero sticking up for me every step of the way! Hopefully I don't become a hermit!
Maybe I will have to have more parties because I love to cook and without knowing it have been cooking nearly gluten-free all this time!
I might not get this exactly right because I didn't fully understand the research projects but here's what I gathered:
The first one was to use a test strip, almost like a pregnancy test, to see if it could be used in doctors offices for instant celiac testing results. She took a pin prick of blood and put it onto the test strip. I came up as negative!
The other research had to do with genetic testing and DNA markers. It involved giving extra blood and a couple extra biopsy samples along with daily phone surveys for 1 week.
I don't think they would pay for lodging and testing (although I was paid a small amount for participating).
I didn't know anything about the projects until the day of my appointment when 2 different women came in to talk to me about them. Maybe they vet the patients according to their needs? I do know they were looking for people who had not gone completely gluten free and were newly diagnosed. Since my biopsy had not been done yet, my participation in the 2nd one is on hold.
I hope you find some answers in your biopsy!
I thought I would share my recent experiences in case it could help anyone with access to the Mayo Clinic in MN.
I am a 42 femaile and recently had a blood test the came back with "very likely celiac." I have had symptoms for years and even asked my Dr. in 2008 about it, she basically shunned me and told me I didn't know what I was talking about. Finally, a few weeks ago a new patch of blisters broke out on my knees (I have had these blisters for 20+ years and could never get a diagnoses) I got an appointment with a new Dr. (purposely picked a young female doctor knowing I could be more assertive with myself) and told her I wanted a Celiac blood test. She obliged and was shocked at the results.
As soon as I got the results I called the Mayo Clinic in MN knowing they have Dr. Murray, a celiac expert. Fortunately the Mayo Clinic is in-network on my insurance. They took all my information and had me fax medical records and my recent blood test results. They called me back in 2 days and wanted to see me that same week for a meeting with Dr. Murray and an endoscopy of my small intestine! I was shocked I got in so quickly. It turns out they are doing 2 research projects right now on celiac and one especially on newly diagnosed patients. My meeting with Dr. Murray was fabulous. He took everything I said seriously, not the usual "oh, that's not related" bit I've heard over the years. He was truly interested in all my symptoms, stuff my husband brought up that I didn't think could possibly be related (good to bring DH along to remember all those times you complained about stuff or had weird allergic reactions).
At this point I don't know the results of my biopsy. I have another appointment with Dr. Murray on the 18th to go over my results. He ordered several other blood test for allergies or markers for other diseases. I feel confident even if my biopsy comes back negative he will help me figure out what is wrong with me.
If there is anyone else out there with positive blood results living within driving distance or willing to spend a night or two in MN I highly recommend the Mayo Clinic. I think some people think you need to have a special referral or on your death bed before contacting them, but you don't. I called them up without my Dr. even knowing and not fully understanding my blood test results. Along with my next appointment they have a bone density scan set up and a meeting with a dietitian.
For a reference my symptoms include: DH skin rash (not officially diagnosed), inflammatory osteoarthritis (autoimmune), mild digestion problems and bloating (but unknowing had already cut back majorly on gluten), fatigue, low iron.