Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

newbie: emotional issues accepting Gluten Free Life


Gma of 3

Recommended Posts

Gma of 3 Apprentice

I found out roughly 3 -4 months ago by accident that I am gluten sensitive.  One day I woke up and had joint pain in just about every joint on my left side. ie, elbow, wrist, knuckles, hip, knee, ankle and feet.  I was already having issues with intense foot pain that I mistook for plantar fasciitis.  Once I googled the symptoms, and realized ALL of several other things were happening at the same time as a result of gluten as well, I knew the answer.  I had been bloating in my belly for decades, and also having migraines for years,  but as of this year, I was looking VERY pregnant after each gluten episode. This was highly upsetting.

  I am 52, and fairly active otherwise.  I had Migraines, depression, anxiety and now joint pain and peripheral neuropathy.  I'm on anxiety meds, and have hypothyroidism and diabetes 2.   Getting to the bottom of the problems with my symptoms finally, has been exhilarating and exhausting at the same time. 

I cannot test for Celiac because my insurance won't pay for this since I am not anemic and have no family history of Celiac. 

Since I have been eating gluten-free, I have been feeling better, besides the mistakes that produce symptoms within 30 min-an hour. When I make a mistake, my symptoms come on faster and faster, and also more intense.  For example, I ate at a restaurant thinking I was okay, and by the time I got home and exited the vehicle I looked 7 months Prego, and my feet felt like I was walking on razor blades.

The last week or two has been the best for not making mistakes, and finally I can eat without feeling horrible.

Here's the thing:  I still can't wrap my head around this!  I comb through the forum for answers and have learned so much!  I have an extremely supportive boyfriend.  I just am in so much denial about this.  It's emotional for me and some days I just can't handle it.  I know many people with full blown Celiac's disease have it way worse than I do, I just can't deal with this very easily.  Has anyone else been through the denial phase and emotional upset upon realizing the life changes that have to happen just to feel better when eating?  What did you do about it?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Short answer to this:

 Has anyone else been through the denial phase and emotional upset upon realizing the life changes that have to happen just to feel better when eating?

All of us!!!!!! It's mourning & it's normal. Breaking down in the grocery store & sobbing? Yep. Normal & I think we've all done it at least once if not multiple times.

I would love to say more but dinner is calling me to go make it so I have to run for now.

HUGS!

Link to comment
Share on other sites
Jmg Mentor
46 minutes ago, Gma of 3 said:

What did you do about it?

I wrote a big moany rant!

First few weeks are rough.  It gets better as you get your head around it.  But your response is natural and as SI says weve all gone through it. 

This is the process: Open Original Shared Link 

Best of luck :)

 

 

Link to comment
Share on other sites
Victoria1234 Experienced
45 minutes ago, Jmg said:

I wrote a big moany rant!

First few weeks are rough.  It gets better as you get your head around it.  But your response is natural and as SI says weve all gone through it. 

This is the process: Open Original Shared Link 

Best of luck :)

 

 

JMG,  I just read your link and the posts about your non celiac diagnosis and although they are about a painful experience, they are enjoyable to read. You are very talented. Have any of your jobs involved writing?

Link to comment
Share on other sites
Jmg Mentor
25 minutes ago, Victoria1234 said:

JMG,  I just read your link and the posts about your non celiac diagnosis and although they are about a painful experience, they are enjoyable to read. You are very talented. Have any of your jobs involved writing?

Yes, I used to write a lot, for work and pleasure. Now, not so much. Which probably explains why you guys have to suffer the occasional bout of nonsense!

Link to comment
Share on other sites
Pauliewog Contributor

 I have a friend with MS, another with breast cancer and a third with RA.  At the same age my only problem is I cannot eat gluten!  So when I start getting frustrated about food I think about that and how lucky I truly am.  Once you get in the swing of it it gets easier and then you start to feel better which makes it all worth it. 

  Also when I first went gluten-free I read on this group about Mark's daily Apple and the Paleo community. I turned to that which was extremely motivating.  I've never seen so many people so excited about not eating gluten. It was a very positive energy and motivated me to find other foods to eat. Also, they love bacon! 

Link to comment
Share on other sites
Gma of 3 Apprentice

Well thanks everyone seriously. I'm sure this will get better and I'm thankful this reaction is normal. So guilty when I think of others worse off than me. I will read and read and read until I've taught myself to feel better. And then help others ((((hugs all around)))

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Ya Ya Newbie

Hi!  Yes, we've all been there-- sad, angry--- I remember having a meltdown in a Whole Foods parking lot, thinking I would Never be able to enjoy a meal again.

Since you have reached the magic age of 50+, you might be due for a Colonoscopy/--- and in the 'pre' appointment, you should discuss your concerns with the gastro doc----- usually one Does have to eat gluten for a good length of time before the procedure---sorry--- but it might be just the way to get a diagnosis!!!

take care!

yvonne

Link to comment
Share on other sites
squirmingitch Veteran

2 weeks of eating gluten for an endoscopic biopsy as opposed to 12 weeks for celiac serum panel.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      124,664
    • Most Online (within 30 mins)
      7,748

    Fishincoug
    Newest Member
    Fishincoug
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.7k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Just to add something here... if any people in the UK are reading this, there can be definite advantages if you are formally diagnosed coeliac,  in terms of getting extra support from the NHS.  For free you get to see a nutritionist, additional vaccinations if deemed necessary, in some areas prescriptions for gluten free food; bone density scans, annual blood tests and reviews with a gastroenterologist, plus it has been my experience I've been able to see a gastroenterologist without a GP's re-referral when I've had complications.  That said, I don't know what impact there would be on health insurance; but I have found that when it comes to travel insurance I have had to declare it but it hasn't made any difference to the premium. However, I realise things can be very different in other parts of the world, and I am not sure where you are from, @Ginger38  
    • Ginger38
      Yes I figured out I couldn’t have gluten years ago when I was symptomatic and tested positive, but was misinformed and told I couldn’t have celiac but to go gluten free. I was already gluten free. I was never willing to go back on gluten and make myself so sick to have the biopsy especially when the biopsy isn’t 💯. But Now I have to have a procedure anyway and he told me he was doing the biopsy either way .. but I should consider the gluten challenge since I have never had the biopsy. He acted like it was super important to have this on paper.  I had no idea there were any possible negative drawbacks to having a formal diagnosis 🤦🏼‍♀️
    • Scott Adams
      While I understand wanting a formal diagnosis, it sounds like you will likely remain gluten-free either way, even if you should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS). Keep in mind that there are also drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications.  Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis.
    • Wheatwacked
      I take Clonidine for BP no gluten reaction.  It was originally prescribed for adolescence who could not take Ritalin.
    • Ginger38
      Basically because he was going to do the biopsy either way , so I agreed after him bugging me lol (after all this time of refusing) (and I’m already regretting) to do the gluten challenge. But yes he’s already told me even in if the biopsy is negative I still have to live as a celiac for the rest of my life bc he’s certain I’m celiac positive regardless of what the biopsy shows. But he can’t put it on paper if it’s negative so I really don’t know what the point is. I have all the symptoms and have had positive IgA antibodies every time I’ve been tested. They did decrease after starting a gluten free diet but never made it to zero.  Also my daughter is going to pediatric gastroenterology in a few months so I thought it may be helpful for her for me to have the procedure 🤷🏼‍♀️
×
×
  • Create New...