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

Hello I Am Getting Somewhwre I Think Xx

needtobebetter

Recommended Posts

needtobebetter Apprentice
needtobebetter
Posted

hi ya ..

following on from last message hope your all well and keepm ing your chins up..x

I decided to pay to see neuro private had to borrow some money but i think it was worth it..she was loevely..

I explained everything allergies ..facial droop, shriveled skin..dsitention in tummy, paralisis, loss of sensation right side of body, tingle in face...seizure..constipation..bla bla..

She tested me and said that i have no refllexes something is wrong but from what i have explained she thinks she knows what it is and wants me to have tests and physio asap ..but wouldnt tell me.. she doesnt think i have celiac but I have been ill and

i have problems with foods for s long i dont want to dive back in to eating it again..

she said that i will get better and that the doctor must send her refereal letter asap. she was quite sharp about the doctor which was later on understandable. i ve been going for two years and they have just labelled me ibs depressed person with bit of bells palsy..they wont refer me nhs any more but i knew i had to see neuro about what had just happened as it was serious..

when i got to ppointment i had forgotten my letter from doc..they said dont worry we will get it faxed over..so after id seen her i opened the letter and it was basically calling me a depressed patients who had no real reason to go just bells pulsy..when really by what she says its alot more serious..

she said she thinks i ve got a syndrome..the only thing i can find is Guilli barre syndrome...sounds just like it ...but why ...and does any one know if this connects to celiac disease...

i know it an autimmune and wondered if any one has both

xxxx

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

I think that you should get a total medibolic blood work up and make sure that you are not deficient in anything due to Celiac.

You may also look into Peripheral Neuropathy. Google that and see if it fits. Low B-12 or hypoglycemia can also cause symptoms such as you described.

Good luck in your search.

Chris E Rookie
Chris E
Posted
hi ya ..

following on from last message hope your all well and keepm ing your chins up..x

I decided to pay to see neuro private had to borrow some money but i think it was worth it..she was loevely..

I explained everything allergies ..facial droop, shriveled skin..dsitention in tummy, paralisis, loss of sensation right side of body, tingle in face...seizure..constipation..bla bla..

She tested me and said that i have no refllexes something is wrong but from what i have explained she thinks she knows what it is and wants me to have tests and physio asap ..but wouldnt tell me.. she doesnt think i have celiac but I have been ill and

i have problems with foods for s long i dont want to dive back in to eating it again..

she said that i will get better and that the doctor must send her refereal letter asap. she was quite sharp about the doctor which was later on understandable. i ve been going for two years and they have just labelled me ibs depressed person with bit of bells palsy..they wont refer me nhs any more but i knew i had to see neuro about what had just happened as it was serious..

when i got to ppointment i had forgotten my letter from doc..they said dont worry we will get it faxed over..so after id seen her i opened the letter and it was basically calling me a depressed patients who had no real reason to go just bells pulsy..when really by what she says its alot more serious..

she said she thinks i ve got a syndrome..the only thing i can find is Guilli barre syndrome...sounds just like it ...but why ...and does any one know if this connects to celiac disease...

i know it an autimmune and wondered if any one has both

xxxx

Hi

I gather your from the UK by your reference to the NHS? Where abouts are you from? Just wanted to say..... don't accept the diagnosis of depression. Only you know when there is something wrong with your own body. I have been unwell for over a year now and have not yet got to the bottom of my problems and depression has been suggested as an explanation. However i know that i am not depressed and will not keep giving up with my doctor.

My symptoms seem to be extremely similar to those of celiac, but i do not want to try such a hard diet until an official diagnosis. I have had the blood test and it was negative. Like yourself i have also experienced Bells Palsy although this was about a year before the onset of all of my problems. Does anyone know if Bells Palsy is related to celiac in anyway?

I have lost all trust i have in doctors now and some of my own family also think im mad. So annoying!

keep going

Chris

grey Explorer
grey
Posted

FYI, I think this is probably the syndrome your doctor was talking about: Guillain-Barre Syndrome.

This is the link to more info at the Mayo Clinic, including a symptom list.

Open Original Shared Link

this is the internation foudation for the syndrome.

Open Original Shared Link

I hope your health improves.

Archived

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

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


  • Member Statistics

    • Total Members
      131,284
    • Most Online (within 30 mins)
      7,748
    mjrowen
    Newest Member
    mjrowen
    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

    • numike
      is my cleiac disease gone?

      By numike · Posted

      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      is my cleiac disease gone?

      By Wheatwacked · Posted

      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      is my cleiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      is my cleiac disease gone?

      By numike · Posted

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      is my cleiac disease gone?

      By trents · Posted

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
×
×
  • Create New...