Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Panic ... Not Knowing Versus Knowing

LookingforAnswers15

Recommended Posts

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted

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 =(.

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

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 Grand Master
cyclinglady
Posted

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 Community Regular
nvsmom
Posted

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 Mentor
RMJ
Posted

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 Community Regular
nvsmom
Posted

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 Enthusiast
LookingforAnswers15
Posted
  • Author

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! 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.