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. Scott Adams
      - Scott Adams replied to RDLiberty's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Toothpaste question.

      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune r...
    2. Scott Adams
      - Scott Adams replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Probiotics

      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat...
    3. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Celiac attack confusion and anxiety

      What you are describing, while terrifying and severe, is an experience that others in the celiac community have reported during a powerful reaction. The systemic inflammation triggered by gluten exposure in someone with celiac disease can absolutely extend far beyond the digestive tract, creating a cascade of symptoms that feel like your entire body is in...
    4. Scott Adams
      - Scott Adams replied to nanny marley's topic in Related Issues & Disorders
      2

      Manitol and mri

      The substance you're likely thinking of is "mannitol," which is a sugar alcohol, and it is indeed used as a sweetener in some "sugar-free" products. However, for an MRI, the drink is almost certainly "Mannite," which is a brand name for a laxative preparation used to cleanse the bowel before the scan. Its primary purpose is not to sweeten but to create a...
    5. Scott Adams
      - Scott Adams replied to bombier's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      KATZ CINNAMON DONUTS

      I'm so sorry to hear you're feeling so unwell, and I hope you recover quickly. While your personal experience of getting sick is absolutely valid, there are a few key inaccuracies in the information you've shared that are important to clarify for anyone else reading. The central misunderstanding is about oats and gliadin. Oats do not contain gliadin...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,791
    • Most Online (within 30 mins)
      7,748
    klholt
    Newest Member
    klholt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Toothpaste question.

      By Scott Adams · Posted

      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune reaction in celiac disease. Hydrated silica and silicon dioxide are minerals, chemically inert compounds of silicon and oxygen, and are completely unrelated to gluten proteins. They are widely used as abrasives in toothpaste and anti-caking agents in food powders because they are stable and non-reactive. While any individual can have a unique sensitivity to any substance, there is no mechanism by which these silica compounds would mimic gluten or exacerbate celiac disease. Your diligence in using a certified gluten-free toothpaste is the correct and most important step, as it eliminates the risk of cross-contamination with wheat-derived ingredients like starch. Based on current scientific understanding, the hydrated silica in your toothpaste is not an issue for your celiac management.
    • Scott Adams
      Probiotics

      By Scott Adams · Posted

      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat-derived starches or are produced in facilities that handle gluten, posing a cross-contamination risk. Furthermore, the specific strains of bacteria can matter; some research suggests strains like Lactobacillus and Bifidobacterium may be beneficial, but individual responses vary greatly. Because the supplement industry is not tightly regulated, choosing a reputable brand that undergoes third-party testing for purity and potency is key. 
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      What you are describing, while terrifying and severe, is an experience that others in the celiac community have reported during a powerful reaction. The systemic inflammation triggered by gluten exposure in someone with celiac disease can absolutely extend far beyond the digestive tract, creating a cascade of symptoms that feel like your entire body is in revolt. The severe pain, neuropathy, muscle and jaw tension, and intense anxiety and confusion are all potential manifestations of this body-wide inflammatory and autoimmune response. It's a well-documented phenomenon that a celiac attack can provoke a significant neurological and psychological component, including "brain fog," disorientation, and panic-level anxiety. While your first step should always be to meticulously re-check all foods, medications, and even cross-contamination sources, it's also possible that a previously safe product has changed its formula or that you encountered a hidden source. 
    • Scott Adams
      Manitol and mri

      By Scott Adams · Posted

      The substance you're likely thinking of is "mannitol," which is a sugar alcohol, and it is indeed used as a sweetener in some "sugar-free" products. However, for an MRI, the drink is almost certainly "Mannite," which is a brand name for a laxative preparation used to cleanse the bowel before the scan. Its primary purpose is not to sweeten but to create a clear image by distending the bowel and stimulating a bowel movement. While the names sound similar, the function and formulation are very different from a small-quantity sweetener. That said, your concern is valid and should be addressed with your healthcare team. The most important step you can take is to call the MRI department or your referring doctor directly. Explain your specific reaction to sweeteners in detail—mentioning the throat and ear sensations is crucial as it could indicate a more significant sensitivity. They can confirm the exact drink they use, check its full ingredient list for you, and determine if an alternative prep is available or if pre-medication is recommended to ensure your safety and comfort during the procedure.
    • Scott Adams
      KATZ CINNAMON DONUTS

      By Scott Adams · Posted

      I'm so sorry to hear you're feeling so unwell, and I hope you recover quickly. While your personal experience of getting sick is absolutely valid, there are a few key inaccuracies in the information you've shared that are important to clarify for anyone else reading. The central misunderstanding is about oats and gliadin. Oats do not contain gliadin; gliadin is a specific protein found exclusively in wheat. The protein in oats is called avenin, which is similar in structure but is a completely different compound. For the vast majority of people with celiac disease or gluten sensitivity, pure, uncontaminated oats are safe. The reason "gluten-free" oats are necessary is because regular oats are frequently cross-contaminated with wheat, barley, or rye during growing and processing. Certified gluten-free oats are tested to ensure they are free from this cross-contamination. It's possible you may have a separate and less common sensitivity to avenin in oats themselves, or the illness could have been caused by another ingredient or even an unrelated virus. Given your expertise and severe reaction, it would be a good idea to discuss this with a doctor to pinpoint the exact cause. This article, and the comments below it, may be helpful:    
×
×
  • 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.