I am frustrated. I went to the Ear Nose THroat doc today who basically said I need to see and endocrinologist for this type of stuff. I wrote my primary care doc asking for the t3 and t4 tests and she said that because my TSH was fine 5 months ago that there is no reason to order these new tests.
I wrote her back a long email telling her how things have changed and that 5 months is a long time, especially since I went Gluten free 4 months ago, giving any thyroid problems a window to show up. An auto reply email came back saying that she is on vacation for a week.
Kinda pissed off and frustrated. I was looking into ordering the labs myself through the web, where they go through labcorp. what do you think about that idea?
It took me decades to figure out that I got depressed after being ill and never got ill because I was depressed! It seems simple but when docs were repeatedly telling me that I was healthy and that my symptoms must be caused by depression, stress, hormones, overworking or simply being a Mom -- eventually part of me believed it...I know that I went several years without going to doctors because I didn't want to hear it - in my gut I knew they were wrong -- and guess what? -- the problem was in my gut all along.
This is a great statement. I have been struggling with this a lot. It boils down to the notion of whether or not one believes that the mind can cause such severe psychosomatic pain. I mean, can a fear or worry have such a profound effect on the physical state as to cause damage to the intestines and make us feel all the symptoms of celiac? Or does one believe that the symptoms originate with celiac and the psychological issues are conflated and confused by them?
the theory that the simplest answer is usually the best shows me that it most likely is that celiac is causing the problem, and the psychology is being dragged along for a ride.
I believe that my biggest symptom is anxiety, just like the other posters on this thread. I have been an anxious and worried personality my whole life, but I had gotten it under control and was really doiing well, emotionally and mentally. Then about two years ago I started to feel not quite right, after 6-8 months it developed into a full blown panic/anixety disorder, then it got even worse, and then about 8 months ago I was finally tested for celiac.
It has been 5 months since i started the diet and I have to say that I am feeling quite a bit better, and the anxiety level has gone down from an 11 to maybe a 5-6, but it is still somewhat high. I would love to get it back down to a 2 or 3 (which i feel would be a normal amount, like when I was in good shape a few years ago).
I have to remind myself that this is a major process of healing a very damamged body. It doesn't happen overnight. The problem with an anxiety disorder is that your brain wants to see it fixed right now! if it doesn't get fixed instantly, its just more fodder for the anxiety monster to use against you.
I feel like i just need someone to talk to who understands and doesnt think i'm a hypercondriac.
I found out I have Celiacs 3 months ago. I instantly went Gluten Free and have stayed that way. Before finding out I was always tired and had no motivation, never really depressed but very low and also over weight with lots of stomach cramps. When i went Gluten Free I did feel better at first, i had more energy and no stomach cramps although I didnt feel 100% I felt an improvement. Now I still remain without the stomach cramps but for the last week or so I have been back to feeling tired and low and just cannot motivate myself. i am finding doing my job daily difficult and I seem to have no time for my boyfriend I have paid him no attention at all because I just dont feel like I want to.
Is anyone else feeling like this or has anyone else felt like this? Am i going mad? Is this something not related to Celiacs?
Yes, for me the emotional symptoms were and remain the most powerful. After the first 2 weeks I felt really good and felt like I was making strides. Then it hit me again and i felt so dissapointed and discouraged, and I went into a deeper hole than i was even before i found out. It is a roller coaster ride, i would say even now 5 months into the diet it is challenging and has its ups and downs. If you remember math class my feelings go up and down like a wave, but the trend line is pointing up, if you know what i mean.
After 5 months I can objectively see how much better I feel, but in the moment, when something bad happens, or you eat a little gluten and react, it can feel like the whole effort was for nothing and you are a failure. You have to resolve to push through the tough moments. I still fight that battle most days.
It is nice to be able to come to the forum and get reassurance and support. You are headed in the right direction.
I agree with shellb65. I too was diagnosed with a thyroid problem in my 30's and have only recently been diagnosed with coeliac disease. The chances of having other auto immune diseases when you already have one are increased. Get your thyroid checked out, any reasonable doctor will do blood tests for thyroid disease. You are not a hypercondriac,you are like the majority of us on here, you just want to get well! Good luck.
I have only had the TSH level checked, which came back normal range. But I have read that does not really mean anything and the full tests should be done. Thanks for all the responses. I just get this feeling from kaiser that they know better than me what I should be suspicious about, and that the TSH was normal there is no reason to go any farther. I really hope that there is something up with the thyroid so that it helps me understand the continuing symptoms. Ever since this whole thing started I have become a different person and I want to get back to the person I was and can be without my health causing me to second guess everything and avoid responsibilities.