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

Hope For Healing


sandsurfgirl

Recommended Posts

sandsurfgirl Collaborator

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

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

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

Thanks. I needed this.

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

((((hugs))))

Looking for answers Contributor

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

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

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

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

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

Let's do it!

Looking for answers Contributor

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

Mama Melissa Enthusiast

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.

  • 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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.