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

Two Weeks In - Crying My Eyes Out!


MxMyownsummer

Recommended Posts

MxMyownsummer Newbie

Do you remember?  Think back to the beginning of your diagnosis.  Think back to when you started changing everything, the constant mistakes, the accidental exposure, the feeling great and then feeling like crap again.  The constant headache from gluten withdrawal.  All of it is totally normal, totally expected.

 

And then, then.. then you start to cry.  

 

Did anybody go there, or am I alone?


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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

It is tough.  I think I would have done more crying, if I could of.  Depression is a sad sign of the things you are going through.  Realize that it isn't forever and you can keep going.

 

I had someone to carry me, and I am better,

 

D

Lisa Mentor

Please remember that everything you eat, even though it's gluten free, will run through your body, until you heal.  When the gluten is removed, your intestines will heal. It takes time and dedication to heal.

 

Keep in mind that the goal is to be healthy and feel good.  And every step is working toward that. There are slow steps and we all make mistakes, because it's hard to learn everything all at once.  I had many meltdowns in the frozen asile.  I cried and then I got mad. 

 

I then decided, that if I wanted to regain my life, I had to learn everything I could about Celiac Disease.

 

I hung out here for  a while.  I learned a lot. Eight years later, I 'm still here, through many ups and downs.  There were some really cool people who held my hand as I recovered.

 

I live a very full, normal life.  It's within your reach. :)

pricklypear1971 Community Regular

Do you remember? Think back to the beginning of your diagnosis. Think back to when you started changing everything, the constant mistakes, the accidental exposure, the feeling great and then feeling like crap again. The constant headache from gluten withdrawal. All of it is totally normal, totally expected.

And then, then.. then you start to cry.

Did anybody go there, or am I alone?

No, we've all been there. And we all still make mistakes, years into it. And sometimes, despite doing everything right...gluten still finds you. That's life.

But getting better, and occasionally ill, beats the heck outta being sick 24/7. IMO, anyway.

Marilyn R Community Regular

Do you remember?  Think back to the beginning of your diagnosis.  Think back to when you started changing everything, the constant mistakes, the accidental exposure, the feeling great and then feeling like crap again.  The constant headache from gluten withdrawal.  All of it is totally normal, totally expected.

 

And then, then.. then you start to cry.  

 

Did anybody go there, or am I alone?

Hi MxMy,

 

No....no...no...you aren't alone.  I was really depressed about it, then really angry (what DID I do to  deserve this), and gradually worked it all out.   Going to the grocery store was really hard at first.  I'd end up in tears before I could check out because of shopping cart envy.  Now I look in the carts and think "Those poor sods." 

 

Remember, you still get to eat really good food, better than most people do.  You just have to cook and plan more.  Wish you well.

ravenwoodglass Mentor

No your not alone. I was so very sick when diagnosed I couldn't imagine how I was ever going to have the energy to cook every meal. Shopping was a long and frustrating task. My DD even refused to shop with me for a while after I burst into tears in the grocery store. I made so many mistakes at first, in part because I didn't know I couldn't tolerate soy and in part because I didn't have the wealth of info and support that I found here a couple years later. The withdrawl is tough but for me one day it was like a huge and heavy blanket was suddenly lifted off me. I think that took about 2 to 3 weeks. It was easier after that withdrawl was done.

You will get through it but it is hard to be patient with your body. After diagnosis we all want to instantly be well but it does take time to heal. You will get there.

VeggieGal Contributor

Oh do I remember !! Shopping in the supermarkets reading labels and saying pffft pffft pffft as I moodily felt like slamming the items back on the shelf :(

I like lots of others had no energy at first to cook or think clearly, I went through mild depression (which was probably the gluten and withdrawal).

It felt like Id never feel right...but finally 7 months later (touchwood!) I have much better days than pre-diagnosis. Im happy I can do something about my health as if it wasnt for diagnosis, I wouldnt be eating and trying new healthy things and learning about nutrition or have realised other intolerances/allergies.

It does get better .. you'll be fine :)


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



Celiac.com Sponsor (A8-M):



Nikki2777 Community Regular

Oh yes, breaking into tears outside of Chipotle when I realized they weren't taking any precautions and I couldn't trust to eat safely there (my local one, I started a thread).  And then again when my mom said I was over-reacting, and don't let this be such a big deal (after I broke down, she did some research on her own and realized that this was serious stuff, not a hangnail).

 

What really helped me was knowing that I needed to appear strong for my kids, so that if they ever got this, they wouldn't fall apart.  And once I started finding snack foods that were really (really!) tasty and figuring out what I could and couldn't order at restaurants (and how to ask for it), it started getting better.  Now - 4 5 months in -- it rarely gets me down.

 

Good luck.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    2. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    3. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

    5. - Xravith posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,463
    • Most Online (within 30 mins)
      7,748

    The Yellow Rose
    Newest Member
    The Yellow Rose
    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

    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
    • knitty kitty
      What exactly are you taking from doterra? 
    • Xravith
      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease. However, he said, because of my family history and my symptoms were strongly related to gluten, it was very possible that my Celiac Disease is developing and my antibodies may become positive in the future.  I tried to continue the gluten challenge for the biopsy, around 2-3 g of gluten per day, but it was enough to make me feel worse each passing day. I started developing anemia and other mild nutritional deficiencies, and it was really affecting my daily life. I'm a student and exams are coming up, so my doctor suggests me to strictly remove gluten until I feel better so I could study without problems until I could do the gluten challenge when I come back home for holidays. Since going gluten free, I feel like a completely different person. My mind is clearer, I have no stomach pain during the day, and even my nails improved within just two weeks. It could also be Non-Celiac Gluten Sensitivity, but of course I’ll need the biopsy to know for sure. I was wondering, has anyone else had negative blood tests at first and later tested positive? And has anyone struggled with the gluten challenge because of symptoms?
×
×
  • 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.