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

Update On My Dizziness

glutout

By glutout
in Coping with Celiac Disease

Recommended Posts

glutout Rookie
glutout
Posted

Hi all. I posted awhile back on some dizziness issues I have been having. I went to see an ENT to have my ears checked or to rule out issues with my jaws since I do occassional grind my teeth. Well, according to the doctor it is not my jaws causing the prob lem and he does not classify my symptom as "dizziness". It is more of an unsteadiness. He had me close my eyes and I could not stand up without leaning over, nor could I stand and lift one leg with my eyes closed! That is so not like me. I have had good balance my whole life with the exception of the last 2 years. He asked me if I knew what could be wrong with me??? I told him, no that's why I came to you!!! :o After looking into it,I wonder if this could be more of an ataxia problem, and if so, why is it getting worse when I have been gluten free for a year and a half??? Just thought I would update in case anyone is experiencing the same thing!!! :D

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

Celiac.com Sponsor (A8-M):


Reba32 Rookie
Reba32
Posted

Yes, I'm experiencing much the same thing, but I have increasing dizziness on-going for the past 10 months or so. I've seen 2 ENTs and neither one of them have even the slightest inkling of what's wrong with me. They just keep sending me for more tests. There's nothing wrong with my inner ears, no infection, no evidence of damage at all.

I am convinced it's another auto-immune disease, I just don't know which. So I shall just keep going back to my GP/PCP until we figure it out. Which is soon I hope. Yesterday I was so dizzy and nauseous I thought I was going to puke all over myself.

AVR1962 Collaborator
AVR1962
Posted

Glutout & Reba32, do you both find you are more dizzy (off-balance) when you have been glutened? Does it then slowly fade? Are you repeatedly getting glutened? The reason I ask is this has been one of my hardest symptoms to get rid of for me as well. High fructose does the very same thing to me. It will take me 3 weeks before I feel like I am not floating, my vertigo gets worse during these times. The only things with me is I don't think in 5 months I have made it past 3 weeks without getting glutened somehow so this has not passed entirely for me. I know that any alcohol makes it worse but that is the only association I have made. I was reading today and decided to increase my B12 and magnesium, increased my iron earlier this week.

AVR1962 Collaborator
AVR1962
Posted

I found this in a search, one paragraph from the link below:

Cerebellar ataxias including the genetic ataxias however do not have any definitive treatments. Some of the disorders have been reported to be slowed by taking antioxidants such as vitamins A, E, B12, idebenone, and Coenzyme Q10. Vitamin E is the treatment of choice in ataxia caused by vitamin E deficiency. Vitamin B12 or copper supplements are used to treat ataxia related to vitamin B12 or copper deficiency respectively. When associated with parkinsonism, such as seen in the cerebellar form of multiple system atrophy (previous referred to as olivopontocerebellar atrophy), levodopa may be helpful.

Open Original Shared Link

glutout Rookie
glutout
Posted
  • Author

For me, it is there all the time, just in varying degrees--I do not believe I have been glutened. I have been complaining about it for years. I feel I need to get my vitamin levels checked, but do not know which ones are accurate and the best type to get???

Archived

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

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


  • Member Statistics

    • Total Members
      131,904
    • Most Online (within 30 mins)
      7,748
    AnneSN
    Newest Member
    AnneSN
    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

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.