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

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
      132,021
    • Most Online (within 30 mins)
      7,748
    maltawildcat
    Newest Member
    maltawildcat
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
×
×
  • 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.