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

How Do You Cope With New Symptoms?


LookingforAnswers15

Recommended Posts

LookingforAnswers15 Enthusiast

Hi all,

 

I used to consider myself brave but not any more. I am so worried about everything these days and I admire so much strong kids and adults on this forum. 

 

I cannot stop thinking about doctors because I am scared of possible new diagnosis because I have been experiencing other symptoms. I am so terrified to even write down what I am scared of. Tomorrow is my MRI and while I want to hope for the best, I am so scared. I go back and forth when thinking about it and trying to find reasoning for some of my symptoms. I experience so many emotions and I have never felt fear like this before and I have been though a lot. Lately, all my emotions seem so heightened, I feel like someone is choking me, probably get an anxiety attack and just start crying. When I went to see a doctor, i just started crying because of my body feeling weak and being scared. I am horrible at hiding how I am feeling so my family can see if I am not doing well, which hurts them, so then I am worried about their well-being.

 

Hope that all of you that are going through a tough time now, start feeling better soon.

 

 

 


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

I'm so sorry to hear you are going through this. :(

 

I wish I could give everyone a bit of my "ostrich syndrome". Over the years I have gotten really good at not thinking about things that would bother most people. Maybe I should call it Scarlett syndrome instead, as in Scarlett O'Hara's famous saying - "I'll think about it tomorrow."

 

I have no insurance so I can't get tested for the new things that have popped up in my health. I use Dr. Google, which can be a real problem for some folks. They scare themselves silly! But I just don't worry. For example, I'm pretty sure now that I have Lupus. It runs in the family (grandmother, an aunt, and an uncle.) The arthritis in my wrists and fingers that seems to move around, the fatigue, the rash on my face, the occasional unexplained fevers, those all add up to lupus.

 

Is it? Maybe. Probably. I don't know. I wish I didn't have these symptoms but there's not much I can do. My aunt who has been diagnosed with it has the same "ostrich syndrome" that I do. She just says the doctor is wrong and she doesn't have lupus because she doesn't want to have lupus. She takes asperin for the pain and stays away from the doctor as much as possible.

 

So how does all this help you? It probably doesn't. (I'm sorry.) But because you are relatively new I am hoping that these new symptoms are just another manifestation of celiac and you will get better soon. In the meantime, try to stay busy. Read, watch a funny movie, look at cat videos on Youtube. Take a walk, take a drive, call a long distance friend you haven't talked to in a while. Tomorrow is soon enough to start worrying and before you know it the MRI will be over with and you'll have the results. Here's hoping and praying that the results will be good.

 

(((((HUGS)))))

icelandgirl Proficient

Hi Looking and big (((((hugs))))) to you.

I would like some of Barties ostrich syndrome as I do tend to not deal well with new symptoms myself. I can handle it for a bit but after a few weeks I start googling and panicking. I'm also a very emotional person and can't hide my fears no matter how hard I try.

I'm not sure what you are being tested for tomorrow but I hope for you that your MRI goes well and that the results are not what you are worried about.

Have you had full thyroid testing? I ask because when mine has been out of whack my anxiety gets really bad...like what you're describing. Just a thought.

Please let us know how it goes...will be thinking of you and hoping for the best.

LookingforAnswers15 Enthusiast

Thank you Bartfull and Icelandgirl. I am getting ready to go to see a doctor and i am already an emotional wreck trying to hide it as much in a front of my family. 

 

So, i read my horoscope, which I never do, hoping I will get something positive. It said "An unexpected twist of fate might be a wake-up call from your future, reminding you to keep everything in proper perspective. When life hands you lemonade, you should be grateful and drink it." I cannot say that i believe in horoscope but i really did not need to read this today. Even tv shows and fb posts were related to my fears. Have to go now... thank you for thinking and praying for me.

LookingforAnswers15 Enthusiast

Dear Eloise,

 

thank you so much! You are super sweet and your kindness and maturity really impress me. I feel ashamed to be complaining so much when I see you being so brave. And yes, I am also a girl =) but much older than you.I guess I should consider myself a grown up =). I think you are one of the bravest people. I truly hope and pray that everything works out for the best for you as well. A prayer that you have already said for me means more than you think, so please don't create work for your sister to light a candle for me. I would rather have her light an extra one for you. Every time I read any of your posts, I say a prayer for you. You are so good at writing to people and encouraging us. Your parents have an amazing kid =). Sorry for not responding to your bucket list, but I also think it is great and with your attitude and strength, I believe you can achieve anything you set your mind to. I trust in your doctors and I really hope everything will work out. You have a lot of friends here now praying for you, including your new friend :). Hugs

 

 

Update:

I went to see a dr./ a neurologist. Did some basic tests but an MRI machine was out of service so i have to see when I can get it done this week. I am doing better, just need to get it out of my  mind as much as possible. I walked back from the dr.'s office to clear my mind. Sorry for freaking out but you all helped more than you know. As most of you know, we try to protect our families and friends from our worries but we need someone to talk to especially someone who has faced similar struggles.

Thank you again.

icelandgirl Proficient

Hi Looking,

I hope that you are able to get the MRI done this week to get some answers. I find that walking is one of the best things for my mind as well. Please don't apologize for freaking out. Let it all out here. We are here to listen and support you! (((Hugs)))

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,799
    • Most Online (within 30 mins)
      7,748

    Liss Drisk
    Newest Member
    Liss Drisk
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • RMJ
      The normal ranges can vary for the tissue transglutaminase and gliadin antibody celiac tests because the units aren’t absolute.  Could you please tell us what the normal ranges are for the laboratory used? If her tissue transglutaminase results are 10-fold above the normal range some would diagnose her on that alone.  Endomysial antibody ranges are more standardized, and a titer of 1:5 would usually be normal.  Might that be the normal range and not her result?  Her total immunoglobulin A is normal for her age. (This is tested because if low, then the other IgA tests might not be valid).
    • Samanthaeileen1
      Hello there! New to celiac community, although I have lots of family in it.  My two year old was just diagnosed with celiac disease based on symptoms and bloodwork.  symptoms (swollen belly, stomach hurting, gagging all the time, regular small vomit, fatigue, irritability, bum hurting, etc) she got tests at 18 months and her bloodwork was normal. She just got tested again at 2 1/2  because her symptoms were getting worse and these were her results :   Tissue Transglutaminase Ab, IgA 58.8 Unit/mL (High) Endomysial Antibody IgA Titer 1:5 titer (Abnormal)   Gliadin Antibody IgA < 1.0 Unit/mL Gliadin Antibody IgG 8.5 Unit/mL Immunoglobulin A 66 mg/dL Her regular pediatrician diagnosed her with celiac and told us to put her on the strict gluten free diet and that we wouldn’t do an endoscopy since it was so positive and she is so little (26lbs and two years old). I’m honestly happy with this decision, but my family is saying I should push and get an endoscopy for her. It just seems unnecessary and an endoscopy has its own risks that make me nervous. I’m certain she has celiac especially with it running in mine and my husbands family. We are now thinking of testing ourselves and our 5 year old as well.  anyways what would y’all recommend though? Should we ask for an endoscopy and a GI referral? (We are moving soon in 5 months so I think that’s part of why she didn’t refer us to GI)    
    • olivia11
      This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense.   You are not confusing yourself  you have got it right. Thiamax (TTFD) plus a B-complex, and if you want benfotiamine, the Life Extension formula covers that at ~100 mg.
    • olivia11
      High fiber can definitely cause sudden GI distress especially if it’s a new addition but accidental gluten exposure can feel similar. Keeping a simple food/symptom log and introducing new gluten-free foods one at a time can really help you spot the pattern. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense.
    • xxnonamexx
      sorry a bit confused so I should take my B complex along with Objective Nutrients Thiamax for TTFD but what about a Benfotiamine to take. The Life extensions contains Benfotiamine and Thiamine together or im confusing myself. I am trying to see if I take Thiamax what should I take for Benfotiamine. Thanks EDITING after further research I see ones water soluble ones fat soluble. So I guess 100MG as you suggested of Life Extension contains Benfotiamine and Thiamine Hydrochloride. and the Objective Nutrients Thiamax contains TTFD.     would work for me.
×
×
  • 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.