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

Hope For Healing

sandsurfgirl

By sandsurfgirl
in Coping with Celiac Disease

Recommended Posts

sandsurfgirl Collaborator
sandsurfgirl
Posted

Last year at this time I was starting to get extremely ill from my undiagnosed celiac disease. In addition to alternating constipation and diarrhea and gut pain, I was having major dizzy spells, constant sinus infections, joint pain, fatigue so bad it was hard to function, uncontrollable asthma attacks, anxiety attacks constantly so bad I had to pull over while driving so I wouldn't pass out from hyperventilating, numbness in my hands, headaches. I was on so many drugs I had to keep a chart of when to take what and check them off so I wouldn't forget. The doctors had no clue what was wrong with me. I ended up in the ER thinking i was going to die and the beautiful ER doc finally diagnosed me after scores and legions of doctors and specialists couldn't.

So the beautiful thing is this. We live near the beach and every year they build a big sand burm to protect the houses right on the water. The kids all climb it and sled down it on boogie boards or even sleds. Last year I couldn't do it. I would try to climb it and I would get so winded I couldn't. So my husband would take my two kids on there while I sat and watched. It was awful not being able to play with my small children and just having to watch them and not participate.

We went to the burm last week and I got so nervous. Even though I'm feeling great on the gluten free diet and have been able to work out for several months now, that burm seemed like a huge obstacle. And it took me a full 6 months to recover so I've only been feeling good for a few months. So I climbed and guess what! No winded feeling! I decided to sled and it was great so I went again. I finally got brave and surfed the darn thing! I stood up on my boogie board and surfed it over and over until my quads were burning.

I am so thankful for that wonderful man who finally figured out what was destroying my life and gave me my life back again. And gave my kids their mommy back too.

I'm so looking forward to Thanksgiving and Christmas this year being well and being able to truly enjoy it and celebrate.

Newbies, if it's hard right now, STAY THE COURSE. It was into my 7th month gluten free before I had ONE completely symptom free day. Now I'm working out like crazy, surfing sand burms, running and playing with my kids and generally feeling great.

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

Celiac.com Sponsor (A8-M):


MelindaLee Contributor
MelindaLee
Posted

Hey Girl,

So glad to hear your wonderful story. I too feel so much better, most days I don't even care that I can't eat some foods.

We have lots to be thankful for! This is a great week to remember that!

Melinda

Judy3 Contributor
Judy3
Posted

Thank you for your story, I'm a newbie diagnosed 11 days ago. I've been on the gluten free diet since 11/08/10 and I feel pretty good already. Still some pain in my belly but the doc said that would take time to heal. I'm happy to see that if I stick with this, regardless of how hard it is right now maybe just maybe I can get MY life back. Seeing the dietician at the hospital next Friday to try to figure this out as I have Diabetes and Celiac and a ton of food allergies Right now I'm pretty much eating vegies and fruit, rice crackers and cottage cheese. Don't like meat much but I will learn to eat it again I guess. Seasoning seasoning seasoning (I buy direct from a spice vendor so I know they are pure)

Again thank you :)

*Judy

Charlie's Girl Apprentice
Charlie's Girl
Posted

Thanks. I needed this.

I really appreciate you taking the time to post this message of hope.

((((hugs))))

Looking for answers Contributor
Looking for answers
Posted

I know that Burm...seal beach, right? I could walk there in five minutes from my house. So glad to hear of your recovery. I remember when I was really sick a few years ago, a turning point for me to get help was not being to run after my kite. Anyways, so glad you're doing better and joining others on sand sliding :rolleyes:

sandsurfgirl Collaborator
sandsurfgirl
Posted
  • Author

I know that Burm...seal beach, right? I could walk there in five minutes from my house. So glad to hear of your recovery. I remember when I was really sick a few years ago, a turning point for me to get help was not being to run after my kite. Anyways, so glad you're doing better and joining others on sand sliding :rolleyes:

Yes! You and Wolicki and I need to go out to dinner. She and I are really close friends. Beachwood BBQ!

Charlie's Girl Apprentice
Charlie's Girl
Posted

Yes! You and Wolicki and I need to go out to dinner. She and I are really close friends. Beachwood BBQ!

I'll drive down from the South Bay if you want to make it a foursome.

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

Celiac.com Sponsor (A8-M):


sandsurfgirl Collaborator
sandsurfgirl
Posted
  • Author

I'll drive down from the South Bay if you want to make it a foursome.

I am so in need of a gluten free night out!!

Charlie's Girl Apprentice
Charlie's Girl
Posted

I am so in need of a gluten free night out!!

Let's do it!

Looking for answers Contributor
Looking for answers
Posted

Absolutely! I would love to meet you three. :)

Mama Melissa Enthusiast
Mama Melissa
Posted

aww its nice to hear something positive good for you sweetie:) I wished i didnt live so far away i could really use a gluten-free night out as well:)

Archived

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

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


  • Member Statistics

    • Total Members
      127,989
    • Most Online (within 30 mins)
      7,748
    Cappynan
    Newest Member
    Cappynan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
×
×
  • Create New...