Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Epileptic Auras An Ah Ha Moment
0

13 posts in this topic

When I was frequently haveing seizures before diagnosis I would usually have an aura shortly before the seizures began. Mine were olfactory, I would smell things that weren't there. Sometimes it would be like men's cologne but most of the time it was the smell of baking bread. This started when I really young and haven't had a real bad seizure in years but I was thinking of my Dad last night, he was the baker in the family, and this came to mind. My brain must have been trying to tell me something even from the beginning.

Do any of you that have celiac related seizures ever experience the same type of thing? In retrospect I'm glad I at least hallucinated a pleasent smell.

0

Share this post


Link to post
Share on other sites


Ads by Google:

I'm sorry...wish I could say that I relate. My auras involve distorted vision, sounds, and touch, but not taste or smell (must be a different part of the brain) ;) take care. -Julie

0

Share this post


Link to post
Share on other sites

my auras before seizures usually consisted of lights and tastes... would get a metallic taste in my mouth

0

Share this post


Link to post
Share on other sites

This is so interesting and maybe gives me an answer. I have never had a seizure that I know of, but I occasionally find that I smell something strange, it is an acrid sort-of burning something smell. I had a cyst removed from my cerebellum eighteen years ago and have been taking anti-seizure medication ever since. The medication wasn't prescribed to stop seizures but to lessen to tremors that had started in my eyes. I tried going off the medication for about eighteen months but the tremors returned.

After reading that this smell thing happens to others I guess it must have something to do with the scarred area of my brain

0

Share this post


Link to post
Share on other sites

My daughter smelled phantom odors frequently during her seizure days. She smelled different lots of different things.

Cara

0

Share this post


Link to post
Share on other sites




I haven't ever had a seizure, but I did go through a period of time in which I often smelled bread. I can't really connect it to any incident or time period except that I know it was after my second child was born and lasted for a couple of years. I don't know if it stopped before or after I went on the gluten-free diet.

0

Share this post


Link to post
Share on other sites

I just recently discovered that my visual auras [DX'd as either Simple Partial Seisures or Migraine w/o Headache] are probably related to the Celiac - I found an article in a Neurology journal recently that made the connection and made me wonder if anyone else out them has had similar experiences in connection with having Celiac. This is the first mention I have seen on a blog. Wow, I never would have guessed that the auras and Celiac are related. None of my doctors ever even mentioned the possibility. But, come to think of it, I have not had an episode since October 2008, and it was only one by itself and very mild. I was having them in clusters of 2-4 about every 3-7 months before that. I started the gluten-free diet about 3 yrs ago. Hummmm!!!!!

0

Share this post


Link to post
Share on other sites

This post caught my attention when you mentioned 'aura's'. I'm not sure this is what you are talking about, but this link shows a simulation of a migraine aura that is very realistic. I've experienced these for about 20 years. I don't get migraine headaches very often (I've only had a few in my life), but I get the aura's frequently. I can go months w/o one, then have several in a week. They can be disturbing and make things like reading and driving challenging, as they block out a portion of my visual field. I see flashing lights almost constantly, which are sometimes scary (because I can't tell if it is environmental or just mental :rolleyes: ), but mostly it's just annoying. I unfortunately am not one who has found relief from removing gluten from my diet, BUT (I always have to stick my big but in there) , I absolutely believe that gluten is the culprit for many afflictions and illnesses and my daughter has celiac so we all follow a gluten-free diet for her.

Anyway, I have posted this link in the past, but thought it might be of interest here. I went 'undiagnosed' with optic migraine/scintillating scotoma for years and found this last year on the internet. I was shocked to realize that so many people experience this. I'm not sure what impact it has had on my life other than to scare me and make my vision temporarily warble. I don't know if this info is really relevant, but I think it is interesting. And BTW, I get funny smells when I have sinus issues--I ALWAYS smell muffins, and it is strong enough to make me want to gag.

http://www.migraine-aura.org/content/e27891/index_en.html

0

Share this post


Link to post
Share on other sites

What a great link--thank you SO much for posting it!

I have had only occasional optical migraines (looked like the first video, but the auro itself was in black in white--I didn't get any of those pretty colors!), but recently was diagnosed (questionably) with atypical migraine disorder by the neurologist, who thinks that the ENT's diagnoses of Meniere's might be wrong, and that those symptoms might be an AURAL migraine.

It turned out that many of those symptoms were also caused by B12 deficiency, so that is something to look into as well, especially with a celiac diagnosis. Absorption issues usually cause vitamin deficiencies. In addition, many celiacs have reflux problems (that go away with a gluten-free diet) that are treated with acid blockers--and THAT is one of the most common causes of B12 deficiency, according to the B12 websites. (You NEED the acid to properly absorb the B12.)

B12 is also an important part of MS treatment, as well as prevention of Alzheimer's symptoms (also according to the B12 sites)--so it seems that there are LOTS of neuro implications here. So if you are having frequent migraines, you might want to look into B12 deficiency.

In the US, serum levels are considered normal below 200. In Japan, they consider anything under 550 to be deficient--and they have (by far) the lowest rate of Alzheimer's. There is also at least one study indicating that levels below 500 result in neuro problems--I'll try to find that today and post it.

0

Share this post


Link to post
Share on other sites

*waves* me too! me too!

I get the scintillating aura only in the left eye and just occasionally. My MD told me it was an optical migraine and not to worry about it, I had no idea that it was in any way connected to celiac :o

I also get classic migraines, although infrequently, and have an olfactory aura with those....similar to what others have said it I start smelling baking or a brewery smell that's overpowering. One of my colleagues in a previous job wore a perfume that really brought that smell out when I was sliding into migraine time though with her I got a distinct appley smell mixed in with the yeasty smell...I asked her one day if she had been drinking hard cider :rolleyes:

0

Share this post


Link to post
Share on other sites
Do any of you that have celiac related seizures ever experience the same type of thing? In retrospect I'm glad I at least hallucinated a pleasent smell.

Well, this is weird, is there really a connection with this and Celiac!?

I went through a phase, up until a few years ago when it really started to calm down, where I would faint doing anything - standing, kneeling in church, trying on clothes at the mall with my girlfriends, it was horrible. Every time I would faint everyone told me I "shook all over the floor" but doctors never told me I was having seizures - they never used that word anyway.

Before I would lose consciousness, I ALWAYS knew I was going to go down. I knew because of the smell - I told doctors all the time "I have a smell first" but I could never describe the smell. Sometimes they thought I was weird, but one told me that this is not abnormal, as many people smell a smell that they cannot describe but can recognize immediately but as soon as you recognize the smell you're out. I too had the metallic taste in my mouth as another poster said. And tunnel vision. Every time I passed out my body was allegedly stiff as a board. I would just go straight back.

Only a month ago I began a gluten-free diet for all celiac related symptoms but I didn't ever make a possible connection with my fainting and "shaking all over the floor" episodes from beyond the last decade of my life. INTERESTING!!!

So to answer your question, the gluten free diet has DRASTICALLY changed my quality of life, my body, my mind, everything. And it's been less than 30 days. I also have a family history so I am certain gluten has been my poison for quite some time. And also I did have the smell just like you. So hopefully that is the information you were looking for.

Tiffany :)

0

Share this post


Link to post
Share on other sites

TiffLuvsBread, my gosh, you sound like you are having classic seizures. Have you been to a neurologists? They usually do an MRI and an EEG to check brain waves. Mine showed some slight calcifications and irregular variations in brain waves in the area just behind my right ear. Two different neurologists have dx'd it as either as Simple Partial Seizures or Migraine w/o Headache. One was leaning toward SPS and put me on a seizure med which did help to slow down the frequency or the aura episodes. Then the newer neuro, a few years later, said, "No, I think it is M w/o H", and took me off the medication. That was about 1 1/2 yr ago...I have been gluten-free for 3 1/2 yrs now, and haven't had but 1 mild episode during that time. So, who knows? Here is the article I found:

VISUAL DISTURBANCES REPRESENTING OCCIPITAL LOBE EPILEPSY IN PATIENTS WITH CEREBRAL CALCIFICATIONS AND COELIAC DISEASE: a case series

Journal of Neurology Neurosurgery and Psychiatry 2004;75:1623-1625

0

Share this post


Link to post
Share on other sites

Thanks for posting this. Maybe someday US neuros will get more knowledge about the corelationship of celiac and the calcifications. Mine unfortunately was clueless and jsut shrugged his shoulders and told us the 'unidentified bright objects' were meaningless. I would suggest that anyone who suspects celiac and suffers from a seizure disorder print out this information and bring it with them to their neurologist.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,598
    • Total Posts
      918,307
  • Topics

  • Posts

    • celiac disease is psychosomatic
      Actually, there is a place I could complain to about how my request to amend my record was handled. zthey really messed up onthis one. I think this doctor was too careless to set a HIPPA policy in place or doesn't pay attention to generic forms included to fill out with new patient forms. I'm debating whether or not to file a complaint. If the doctor adds derogatory remarks to my report, I will definitely file a complaint. I really should file a complaint for all the patients who are mistreated, but I don't need more stress in my life. I have found doctors like her create stress or sometimes it's best to say goodbye without further contact. Can I Appeal if a Covered Entity Refuses to Make an Amendment? Maybe. An institution must accept complaints about its health privacy policies and practices. Filing a complaint with an institution may not be the equivalent of filing an appeal of a denial of a request for amendment, but it may help if it forces someone new at the covered entity to review your request. However, some institutions may accept formal appeals. Consult the institution’s notice of privacy practices to see if there is an appeal method for a denial of a request for amendment. Talk to the privacy officer at the covered entity to see if you can obtain help. You can also complain to the Secretary of the federal Department of Health and Human Services about how your request was handled. The Department’s Office of Civil Rights processes complaints. You can find information about the process at http://www.hhs.gov/ocr/privacy/hipaa/complaints/index.html. You have another alternative. When a covered entity denies your request for amendment, it must tell you that you can request the covered entity to provide a copy of your request for amendment with any subsequent disclosure of the disputed information. In some instances, it may be important to make the request. Remember that the covered entity is not required to tell others about the dispute unless you ask.    
    • Johnny Carinos
      According to Johnny Carino's' gluten free menu, the potato soup is safe to eat. However, their allergen guide says the soup has wheat. Anybody know which is right? I contacted my local restaurant and sent an email to the email address listed on their website. However, my local place did not know, and no one has responded to my emails yet. I would love to try this restaurant, but now I am worried if it is safe.  allergen guide http://pmgdata.s3.amazonaws.com/menu/75327/pdf/allergy_info_guide_7-21-13_8731.pdf   gluten free menu http://glutenfreeguidehq.com/johnny-carinos-gluten-free-menu/    
    • Celiac.com: Gluten-Free Diets Are Not Necessarily Healthier, Doctors Warn
      Out of about 15,800 children in the schools, 78 were on a gluten-free diet. Of these, 60 percent had celiac disease, an immune condition that makes ... View the full article
    • No gluten allergy because I don't have classic symptoms of celiac
      after you get yourself squared away, these docs need reporting.  out right lying to you...
    • Oat Flour making me sick?
      Hi CeliacMommaX2, 'Yes, you must treat oats like wheat in a situation where gluten free oats cause the same response. I would also not use pots or pans for your daughter, that you have cooked oats in, as there is always a chance that there are traces left in the pans after washing up.  It's better safe than sorry. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,697
    • Most Online
      1,763

    Newest Member
    deandrade
    Joined