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

Hi:new, Scared, Relieved

debster-cbus

Recommended Posts

debster-cbus Newbie
debster-cbus
Posted

Sorry but this might be a long read.

Hello ALL! I'm new around here, but I'll be visiting a lot now that I may be diagnosed with Celiac. I just got my blood test back, from a eurologist, and it says I have antibodies that are fighting gluten in my body..so I'm being sent to a gastrologist. So I immediatly searched the net and found this site.

For years, I would say the past 7 or 8 I've been having the weirdest symptoms. My symptom have always been related to my head and central nervous symptom--never my stomach or intestines--so I always thought what I had had to do with my head. I thought I had MS for the longest time and doctors couldn't diagnose it.

I've been coping, not going to the doctors, because my symptoms would come and go ... and I really couldn't explain some of them. So I'd go to the emergency room every now and again or my real doctor, and because my symptoms weren't classic, no one ever thought it could be Celiac, or even suggested it. So I researched my symptoms on the net and I'd been trying to eliminate certain things from my diet, because I thought that it might help. First it was Aspertame, that did help a bit, then just recently, it was MSG, and that seemed to help, well of course until I ate a piece of bread or something with gluten.

Right now, I'm really scared that since this has gone undiagnosed for so long I may have really damaged myself... I hope not, but I'm also really relieved! If I can finally find the reason why I'm dizzy, have pins and needles, balance issues, foggy head, chest pains, vertigo, then I really don't care about giving up gluten I suffered for far too long.

So I've read that if it goes undiagnosed it may cause other food allergies, is this true? I ask because I have been two days without gluten, yesterday and today, but when I ate some organic peanut butter yesterday, I had a bad reaction, with my head...I honestly just hate eating because I hate the reactions.

Thanks for this site!

Scott

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

Celiac.com Sponsor (A8-M):


GeoffCJ Enthusiast
GeoffCJ
Posted
Right now, I'm really scared that since this has gone undiagnosed for so long I may have really damaged myself... I hope not, but I'm also really relieved! If I can finally find the reason why I'm dizzy, have pins and needles, balance issues, foggy head, chest pains, vertigo, then I really don't care about giving up gluten I suffered for far too long.

Scott

Scott,

Welcome! I've recently figured out the gluten thing. I had the stomach issues, but also the pins and needles/numbness/pain in my hands and feet. It gets really bad sometimes, even making it hard to walk or type (which is important, since I work at the computer a lot). I also suffered insomnia for years, which I never even associated with the stomach issues.

Since being mostly gluten free for about 5 weeks now (mostly is because I sometimes make mistakes). My stomach issues are much, much better, my lack of insomnia is becoming it's own problem, I keep sleeping through alarms! I'll admit, my hands and feet seem to be improving the slowest, I seem to have issues slightly less often, but they are just as severe. But again, these things take time.

Anyway, good luck! I've found the learning curve on this diet is a bit steep, gluten is everywhere! But it is doable, and the results are worth it. Have you downloaded the "newbie" kit? it's well worth a read.

Geoff

GFBetsy Rookie
GFBetsy
Posted

You can find a link to the newbie kit on nini's member page.

Welcome!

aikiducky Apprentice
aikiducky
Posted

Welcome to the forum.

I wanted to quickly point out that if you have mainly neurological symptoms, there's a possibility that you don't have a lot of intestinal damage. So it is possible that the gastro doesn't find enough evidence for a celiac diagnosis, but that should NOT mean that you shouldn't try the diet. After all the testing is done, don't consider testing to be complete until you have tried the diet for a considerable while to see if it helps.

Pauliina

Nancym Enthusiast
Nancym
Posted

Check out the Neurological section of The Gluten File, link in my signature. There's also a doctor called "The Renegade Neurologist" on the internet who has blogged about Celiac and the brain. It isn't something you're likely to get a medical diagnosis for from 99.5% of the doctors out there, very, very, very few are even aware of this. And you can have these symptoms and even brain lesions that have gliadin antibodies and have a fine intestinal biopsy.

Archived

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

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


  • Member Statistics

    • Total Members
      132,015
    • Most Online (within 30 mins)
      7,748
    Rockette47
    Newest Member
    Rockette47
    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

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      Thank you all. 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • 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.