Panic ... Not Knowing Versus Knowing

[LookingforAnswers15]

Hi all,

 

I have recently joined and posted a couple of times already because I am freaking out.I do not think I am strong enough to deal with another (possible) AI disease. I am in a bad place and I have never been so scared about my future.

 

As I said in previous posts, I am afraid to give you all of my symptoms (although I know you could be helpful but as I said, not having a doctor to consult me, it will freak me out even more) at least until I get to talk to a dr. I have been researching online a lot on my own and as I said I am already freaking out.

 

I managed to get an appointment with the gastro dr. that diagnosed me with celiac. The last time I saw her (last month-my yearly check up), she could not really tell me much because they forgot to test my blood for anti-bodies and celiac related tests(did not really explain what exactly). So, I did blood test again and then she sent me to do BMD and ultrasounds, which were ok. She asked me just to call her for the blood results and that we would meet after i complete these 2 tests. When I called her, she said the antibodies were still high but did not want to go into any details. I asked her if she would give me the results so that I could have them if i found a GP and she said it was not necessary to show them that. Now I am worried why she would not give them to me.

 

I am scared of Myasthenia gravis. I have not been tested for that and since she never explained what she tested me for, I began typing all the results and abbreviations online trying to figure it out. So last month she added additional tests, which included Crohn's and Graves (based on what I googled). My mom has Crohn's and i do not have those symptoms. 

 

So, I know that tests are not good based on that brief phone conversation, I feel like crap and terrified.  Some people say: things could be worse, try to be positive and I agree so I do not want to complain but I never ever thought I would have to be dealing with something like this. I am sure you understand this feeling as well.

 

Any recommendations on what to specifically ask her when I see her? I was going to ask her to confirm all AI tests she did and if I need more tests. Tuesday cannot come fast enough but then again, worried what my results will say =(.

 

 

[mamaw]

I  don't  have  answers  but I do  know  if  you  want  copies  of  any  testing  they  have to give  you copies.....whether  she  thinks  you need  them  or  not... Don't   let anyone  tell you  a patient  can't   have their  own  medical information....  some  placed  do  charge  for the  photocopy....

[cyclinglady]

First, take a deep breath and try to relax! There are benefits of consulting Dr. Google, but there are negative things too. Remember, it is just a tool and you are not a doctor!

It sounds like from your posts that your celiac antibodies are still high. Anxiety is one of the many celiac disease symptoms! It appears that you maybe getting glutened. I think you need to focus on that instead of worrying about another AI diseases. Remember that celiac can affect the muscular and nervous systems. So it is UNLIKELY that you have MG. I say that because you stated that your celiac antibodies continue to be high. Even if you do have it, again very UNLIKELY, there is no sense worrying about it (yeah, easier said than done when you are in the grips of celiac disease!).

I know you are not in the U.S., but try to get copies of your medical records. Take notes and ask to see lab results that you can take notes or a photo using your phone. Also see if a friend can attend your doctor's visit. When I was sick, it helped to have my engineering hubby take copious notes. I was too oxygen starved (anemic) to think clearly.

Look to your diet for possible glutenings. Yes, even lotions are suspect! Just chewing on your nails that have smeared with a gluten-containing lotion can make you sick. Search Google for things to watch out for like toasters, wooden spoons, non-stick pans. Check out our Newbie 101 section under "coping".

There is a huge learning curve and many (even a pro like me) can make mistakes.

Hugs!

[nvsmom]

I too would get copies of all tests done.  Some doctors gloss over test results when some should warrant a closer look.  At the very least you can google the tests so you are better informed since you doctor seems to be going out of her way to keep you ignorant.  Sort of odd...

 

Celiac can mimic MANY diseases, and can continue to do so for a good year after starting the gluten-free diet.  I myself was convinced that I had lupus.  I had more than enough criteria to be diagnosed including weird arthritis that would flare up with flu-like symptoms and then leave after a few months with no after affects.  One of my most severe flare-ups happened after I had been gluten-free for 2 or so months, and it lasted 4 months.  I couldn't believe that it was celiac disease but those arthritis episodes slowly stopped happening over the next few years.  

 

Improvements  on the gluten-free diet can take a year or so.  If it is celiac disease related, you may just need time.

 

A friend of mine had issues with myasthenia gravis.  It affected her face and her eye drooped badly enough that she could not see out of that eye; she had to stop nursing for a while.  Doctors treated her with steroids for years and it helped some but not enough.  She eventually decided to change her diet - we are what we eat, right?  She went gluten-free, dairy-free, and ate only organic and as GMO free as possible.  The droop stopped within a year and has been gone for over a decade now.... If this is your problem, know that it can be treated (at least for some) although it isn't a quick fix.

 

Best wishes.

[RMJ]

You know you have celiac, you know your antibodies are still high. Thus they could still be causing all of your symptoms. Celiac is associated with many diverse symptoms; here is a link with 300 symptoms from the University of Chicago Celiac center.

Open Original Shared Link

This paper describes a gluten contamination elimination diet. I am tryng it to see if it will bring my antibody levels down. I haven't had them remeasured yet, but after I started the diet I started to feel really good!

Open Original Shared Link

[nvsmom]

That's true. My autoantibodies were still slightly elevated after 9 month gluten-free, which meant my intestines were still being attacked.  By 3 years gluten-free they were nice and low. (About a 4 with a ref range of 0-14... I think it was.)

[LookingforAnswers15]

I really appreciate your kind words and support. Bringing someone with me to the appointment could be a good idea but there are still finals at the university so I am not sure if my best friend will be able to come. I am really trying not to think about it but it is hard.

I will definitely ask her to print out all of my results for me. Once again, thank you!