I am having a major stress problem. I was told in April that I was a celiac. I had positive antibodies but genetic part was not specific to celiac, but indicated autoimmune. I have been on a gluten free diet until November when my gastro doctor decided to do an endoscopy which was negative for celiac. Now I don't have to be on a gluten free diet, but I told my rhuematologist that I was concerned that my gastro was wrong. So the rhuemalogist requested celiac and IBD panel to be drawn at the end of this month. I went to see the gastro again because I was having more problems and he wants the blood work drawn from the same place as before. He also thinks that my current stomach issues could be related to plaquenil but I am not giving that drug up very easily!! I think he is wrong again. I checked into my insurance since the first time I had the blood work, it cost me $700. My insurance will not pay for it this time because it is genetics. So I called the gastro and left a message regarding my next step. Then a week went by and I left another message indicating I would PREFER a call back immediately. The nurse and I are playing phone tag and no one answers the phone during the day and you have to leave a message. I feel like I have a very knowledgeable doctor because he recognized my sicca symptoms and got me in to a good rhuematologist but I believe he was sloppy on his celiac testing and waiting to scope me 6 months later. I feel like I am creating more stress for myself. I thought about going to a naturopathic doctor but then again, maybe I should just stay away from all doctors.
Thanks for listening....
Winne
i hear ya... sound familiar... just had endoscope in jan afte waiting two and half months to see if i had an ulcer.. geez, by the time i got he test the ulcer syptoms had cleared butn ew problems had risen from the meds they had me on... i know im gluten sesnsitve from blood test and also when i eat it i bloat, have ibs pain etc.... i have read taht a huge majority of sjs patients have gluten issues... you may want to continue gluten free until youre absolutley sure....
personally i have more help from holistic drs than the reg mds...but it costs a fortune....
hope you get answers asap
lori
Hi Winnie :)
Just out of interest - did you feel better when you were gluten free? Were you gluten free when they did the test? Would the test have been different if yuou had not been gluten free?
If you felt better gluten free than not - well keep being gluten free whatever the test result shows.
I know what it's like to be given a dx and then have it taken away again! It's like having a rug pulled out from under ones feet.
Take care - Scottie :)
Scottie
I was eating gluten when I had my blood drawn in March 2011. I did not start my diet until April. I was experiencing fatigue, mild joint pain and extreme constipation at the time along with my usual side pain and cramping in the mornings that I have had since I was 13. I am not sure if I had the test again whether the genetics part would show anything different because I have no other diagnosis besides sicca and the doctors think I have another autoimmune disease but it has not showed up on the blood work yet.
My summer was such a whirl wind and I spent most of it in bed feeling sorry for myself because I thought I was going to die. What I did notice was that my stomach started to growl. I used to eat because it was time to eat. This summer, I was hungry all the time although I was losing weight. My side pain was minimal until August. I had some sort of flare when beginning plaquenil. Mainly, all my digestive problems started back in November and got worse in the last two weeks. This is when I started experimenting with gluten again. I went back to a totally normal gluten-filled diet last week. Boy, I thought I was in 7th heaven!!! I went down the aisles in Wal-mart and bought a cake, corn curls, cookies and noodles!!! I ate fried chicken and mashed potatoes with gravy tonight!!
Being gluten free did not help my constipation or sicca symptoms. Probiotics helped my constipation and I think my plaquenil is finally helping with my fatigue and joint pain. :)
I agree, I probably will be gluten free after the tests. I am really upset that my family has to cater to my needs. We always enjoyed going out to eat, being with friends and family and now the choices of restaurants are limited and friends and family don't ask us out because they don't understand my situation. I hate cooking now. Sometimes I eat a totally different meal than my family. It is very difficult and I just want to be normal again.
Thanks, Lori and Scottie, for the advise. I know what I need to do. I guess I needed some reassurance that this was the right decision. It is such a big one to make.
Winnie
Forget the testing and go gluten free!!! I was improperly tested 30 yrs ago and just found out 5 yrs ago (by diet) that I do indeed have an issue with gluten.
Testing is NOT iron clad. And yes, plaquenil can be murder on the stomach. I can't take it.