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Dizziness/lightheadedness


Niteyx13

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mbledtke Newbie

I just started a new thread before I found this one - sounds like what I'm experiencing.  Any insights?

 

Oh boy, do I need help.  Hoping someone can give me some insight.....

 

I was diagnosed with Celiac Disease in March 2013.  I immediately went gluten free, and noticed incredible improvements in my overall well-being - most markedly mentally.

 

For most of my adult life I suffered with anxiety, depression, irritability, brain fog.  I took antidepressants (Zoloft) for a time, but have been off of them for approx 7 years.....I have taken Xanax on an as-needed basis (if my anxiety got intolerable - this usually only happened a few times a year for a day or two at most.  Another thing that I feel is related is that I have always lost a good amount of hair when I showered in the morning.  

 

My diagnosis came after a LONG bout of gut pain/GI issues.  I had NO idea that my mental difficulties were related to gluten.  Within about 10 days of stopping gluten my gut problems resolved completely, but to my delight, my anxiety and brain fog disappeared COMPLETELY!!!  It has been like a new life for me - I have felt great!!  The only time I get the anxiety/brain fog back is if I accidentally glutened.  I am VERY strict - CC only seems to happen when not eating at home.  The other thing we noticed is that within a few weeks of going gluten-free I no longer lost any hair in the shower.  

 

So, here's my problem.  My anxiety/irritability/brain fog is BACK.  It's bad.  Basically I have been living like I've been consistently glutened for the past 3 months or so.  I am NOT eating any gluten.  I am vigilant about that.  I cut oats approx 2 months ago to see if that would be a culprit (I only ingested certified gluten-free oats anyways) - no change.  I have terrible brain fog  - I feel so lightheaded that it sometimes feels like I'm about to faint.  I've had a few anxiety attacks, and am constantly irritable and anxious.  I am a professional, and find it hard to work with my patients - I sometimes feel so lightheaded that I'm not even sure I'm formulating sentences correctly.  I find it sometimes hard to find words.  I feel like I'm losing my mind.  I am also back to losing a lot of hair in the shower.  SOMETHING has changed, but I cannot figure it out.  

 

This all started around April/May of this year.  Around that time I had herniated a disc in my back, and was on muscle relaxants, pain killers, and steriods for that.  I assumed my foggy headedness was due to all the drugs I was on, but I have been off all meds since the first week of June, and these feelings have not subsided.  Around that time I started a relatively high dose of Vitamin D - around 7000 UI as I was vitamin D deficient.  I have heard anecdotal evidence that too much Vitamin D can throw off your magnesium, which can lead to brain fog and depression - stopped the Vitamin D about a week ago - no change yet.  

 

Have seen my primary care doc a few times.  Tested my celiac blood panel (best it has ever been), Thyroid (TSH - within normal limits), inflammatory markers (all within normal limits).  

 

My doc has recommended going back to Zoloft, but I hesitate.  I am DESPERATE to feel better, but I don't want to mask the problem - I want to find out WHY this is happening!

 

I sincerely thank you for reading my long-winded post, and will be grateful for ANY ideas/suggestions anyone might have.  

 

Thanks!!!!!!

 

Moni 

  • 1 month later...

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Gab951 Newbie

There is the occasional Dizziness that I encounter, but on top of that, does anyone experience Tingling in their Hands and Feet?  I am taking Prilosec for Acid Reflux and also experiencing indigestion.  To the point where I have started taking Gas X to try and relieve the pressure. 

cyclinglady Grand Master

There is the occasional Dizziness that I encounter, but on top of that, does anyone experience Tingling in their Hands and Feet?  I am taking Prilosec for Acid Reflux and also experiencing indigestion.  To the point where I have started taking Gas X to try and relieve the pressure.

Welcome!

Have you been diagnosed with celiac disease? Vitamin deficiencies are common in those newly diagnosed. I would try to get to the root cause of your indigestion and bloating instead of just medicating. Just my two cents!

StClair Apprentice

There are different causes for dizziness. I have had several experiences of awful vertigo, one sending me to the emergency room, and in each case the cause could be traced to my ears. Blowing my nose heavily/repeatedly, a broken eardrum one time after plane flight. Tiny crystals floating in the inner ear fluid get disturbed and cause havoc with your equilibrium. But I can also have a milder form of dizziness/wooziness when my ears get congested from too much dairy. I find I can only have a serving of milk or cheese once every two or three days or I start to get weird and dizzy. This is all just me though, and not sure if it is Celiac related in any way.

  • 3 weeks later...
HannahZ Newbie

The $100, 000 question is: why do we get dizzy AFTER going gluten-free? I never had anything like it before going gluten-free, even though I had a ton of stomach pain.

I also noticed the dizziness after I went gluten free, but in my case it started when I attempted a gluten challenge. After the challenge I apparently became extremely sensitive to even trace gluten contamination.  I am now on a super strict gluten-free diet and doing well (the cross contamination elimination diet I read about in a study by Dr. Fasano and others). I made one tiny mistake two or three weeks ago, while following this diet, and I quickly experienced neuro symptoms, including the dizziness. I think when the diet is sufficiently clean, the body gets a break.  But maybe then our defenses are down and accidental gluten ingestion is worse? I wonder.  Alternatively, it could be that when the diet is clean it makes it easy for the body to signal "avoid that food!" -- I did have that impression when I made my recent mistake. I appreciated the signal and I have made no mistakes since. 

 

All of that said, I would also check blood pressure and blood sugar. It would be smart to consult a doctor to make sure it isn't anything else going on. I know my BP and blood sugar are ok. Mine is just plain dizziness, but I do have some other neuro stuff going on as well (you are lucky not to have that). 

  • 4 weeks later...
CeliacBurger Newbie

  I just wanted to comment here: anything that happens in your gut, can directly affect your brain. Both are connected to each other directly by the vagus nerve, and any adverse events going on in your gut, can absolutely result in brain symptoms. That can include dizziness as well as nausea at the same time. Intestines are called the second brain for a reason. 

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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