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

Hello I Am Getting Somewhwre I Think Xx


needtobebetter

Recommended Posts

needtobebetter Apprentice

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

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
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

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.

  • 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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

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

    • Total Members
      132,867
    • Most Online (within 30 mins)
      7,748

    mark847
    Newest Member
    mark847
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.