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

I Am Really Optimistic!

tiredofdoctors

By tiredofdoctors
in Doctors

Recommended Posts

tiredofdoctors Enthusiast
tiredofdoctors
Posted

I'm going to see a neurosurgeon on Friday. There is a chance that I have an Arnold-Chiari Malformation. In absence of gluten ataxia, this would be a diagnosis that I wouldn't want. However, if I have this, which is a congenital deformity, IT IS FIX-ABLE!!!!! It's a pretty easy surgery, as far as brain surgery goes. My neurologist, whom I respect SOOOO much (he was my mentor in PT school), is having Seder meal with the neurosurgeon I'm going to see as I write this! His wife is taking my medical records to his house!

I think it would be so great if this is fix-able! I might be able to walk again without ANYTHING!!!!!!! Please keep your fingers crossed, and if you're spiritual, maybe say a little prayer for me?? I would appreciate it. I'm trying NOT to put my eggs in one basket, but I am really looking for this to be the answer -- I hope that I'm right! Will let you know . . . . . . Lynne

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

Celiac.com Sponsor (A8-M):


Jnkmnky Collaborator
Jnkmnky
Posted

Said a prayer for you.

penguin Community Regular
penguin
Posted

Fingers crossed, Lynne!

Hopefully this is the answer you've been searching for! We can hope! :)

Goooooooooood luck!!!

Judyin Philly Enthusiast
Judyin Philly
Posted

I'm praying for you to get the results you want and it can be fixed.

love

judy

tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

Thanks, guys! I'm afraid that if this isn't the answer, though, the poor doctor is going to have to deal with a bawling, disappointed patient! He's a really great guy, though -- I've worked with him -- and he is my sister's hero since her surgery. I'm going to tell him first thing that if he can fix this, he'll be an even BIGGER hero to me!

jaten Enthusiast
jaten
Posted

I have said a prayer and continue. What a glorious day it would be to have that diagnosis confirmed and ultimately fixed. :)

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Prayer said!

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

Celiac.com Sponsor (A8-M):


lonewolf Collaborator
lonewolf
Posted

Definitely a matter for prayer. Am praying and hoping that this is the answer for you!

tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

Thank you so much. With all these prayers, surely the doctor will have such POWER! Love, Lynne

debmidge Rising Star
debmidge
Posted

Praying for your sucess with this doctor.

jerseyangel Proficient
jerseyangel
Posted

Lynne--Just seeing this this morning. This would be so wonderful--please know that my prayers are with you. God--I'm excited for you :)

jenvan Collaborator
jenvan
Posted

Lynne-

I am praying for you today. Where two or more...

I tell you solemnly once again, if two of you on earth agree to ask anything at all, it will be granted by my Father in heaven. For where two or three meet in my name, I shall be there with them. Matt 18:19-20

tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

No good news, guys. I do have a Chiari Malformation. I have a 5-7mm descent of the left cerebellar tonsil through the foramen magnum. The neurosurgeon, though, said that he doesn't think that it has to do with my ataxia. He thinks that it's solely due to the gluten damage.

He said that, because I have cerebrospinal fluid circulating throughout the cerebellum, there is no compaction of the brain -- that is when you are a surgical candidate. He also said that articles tend to portray the surgery as easy -- and compared to removing a malignant tumor, it is. He said that it is no surgery to be taken lightly. He said that I could doctor shop and I would find someone who would operate. He also said that the risk of surgery doesn't outweigh the benefit. He said that, in one situation, the woman ended up with ataxia like I have -- due to an unusual amount post-surgical swelling and complications. He said that if I had surgical complications, he hates to think what would happen to me. I know and respect this surgeon. I don't even feel the need to get a second opinion.

I am pretty bummed about this. What it means is that there is no way my condition is going to change. I had looked to this man as my "knight in shining armor" who was going to wisk me off to the operating table and make me the person I was two years ago. Not going to happen.

I need to work now on resigning myself to living with the abilities I have. I think I'm going to call my counselor for a few more sessions -- need someone objective to help me figure things out. Not doing very well right now, but it's the same day that I got the news. I know tomorrow will be a better day . . . . and the next, and the next and the next . . . .

Thanks for your prayers and good thoughts . . . Now, if you don't mind, I need prayers for the "serenity to accept the things I cannot change" . . . . and for G-d to show me my path. I feel as though the bread crumbs I left have been eaten . . . and I just don't know how to get back -- but I'm not supposed to go back, I'm supposed to go forward, with different abilities. I just don't know the path . . . .

Sorry for the long post. Thanks for listening (or reading). Love, Lynne

Canadian Karen Community Regular
Canadian Karen
Posted

Aw Lynne, my heart is breaking for you :(

I just saw this today and was going to post prayers but you had the results on here already.....

I am saying prayers for you anyway - for strength.....

Hugs (lots of 'em)

Karen

debmidge Rising Star
debmidge
Posted

Lynne, Wishing you strength to forge ahead and calmness to deal with this hand you have been dealt.

D.

mouse Enthusiast
mouse
Posted

Oh, Lynne, I am so sorry. Just read this thread for the first time. I will pray for you to be strong in dealing with this blow. But, I really feel that you are already strong and that you will forge ahead and find the path that you now need to follow. Bless you and your family.

jerseyangel Proficient
jerseyangel
Posted

Hi Lynne--I am truly sorry that things did not work out the way you'd hoped. I will say a little prayer that you will have the strength to come to grips with and begin to move forward despite this news. I have a strong feeling, though, that you will do just that ;)

Rusla Enthusiast
Rusla
Posted

Lynne, I am so sorry this did not come out the way you hoped it would. However, perhaps he was your knight in shining armor. If you think he is an excellent doctor and he told you that the surgery could go the other way then, perhaps he is afraid that could be the end result. Then you would be worse off than you are and that would not be good. I hope something shows up to help you in the near future.

lonewolf Collaborator
lonewolf
Posted

Prayers for you, with tears in my eyes. So sorry the news wasn't what you were hoping for.

tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

Thanks guys . . . I think I'm starting to get over the disappointment. My parents sure aren't. My dad wants me to go to South Carolina and have the surgery. My husband (God bless him) had a long talk with him tonight. Hopefully, my Dad got the gist of the conversation, and won't push for the surgery. My mom is sure that we're going to swim EVERY DAY, and that is going to make me better. Period. If it were my daughter, I would believe the same thing!

Thank you for all your support . . . I appreciate it so much. Give me a couple of days, and I'll be back to my silly, laughing jokester. Right now, I think I still need to absorb that I'm going to be in this stupid chair for -- well, forever. I'm pretty bitter about that right now.

My doctors are all calling this "Celiac Disease" now because of Peter Green's book. I told Karen that I want to tell them "this is NOT Celiac disease. I can tell you what celiac disease is: I have a friend who is up all night, almost every night, with diarrhea that won't quit. She has damage which may be permanent to her small intestine and she has other ramifications which may be pretty serious. Walking like a drunk, falling all the time and slurring your speech is NOT Celiac Disease."

I guess I am starting into the "acceptance" phase -- I bought some car polish for my wheelchair! :huh: I was told that I should wax it every six months. Didn't do it the last six months, because I thought I would be chucking it into the closet until someone needed it. WRONG. So, if I have to have a wheelchair, at least I want a nice one. It is kind of pretty. It's candy-painted Teal. I just bought some flashing stars that kids put on their bike spokes so that at least, if I have to have it, it can have some "flash" :P

Okay, I'm getting into the really bad jokes now -- will have to go. Seriously, thank you all again -- so much. You have turned out to be not only great support, but great friends. I appreciate each and every one of you. . . . . Love, Lynne

Archived

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

Go to topic listing

  • 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. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    2. MichaelDG
      - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    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

    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      celiac.com support

      By MichaelDG · Posted

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.