Vertigo caused by celiac ?

[Steve6090]

Hi,

  I have just been diagnosed with celiac disease but have been suffering stomach pain, joint pain and pretty much every symptom for the past 3 years and just now getting a doctor to finally listen and test me appropriately. My question is I have severe vertigo and dizziness/off balance and wondering if anyone else has symptoms like this. I also have bpv (benign postional vertigo  in right ear but bpv usually last 20 secs every once in a while. I have it 24 hrs a day. I’m so miserable and maybe changing my diet will help vertigo just wondering is anyone else has this issue. Thanks 

[CassidyGrace]

Hi Steve. My daughter with Celiac's and down syndrome is dizzy a lot, still has lots of stomach pain and complains of various aches and pains mostly in her legs. We have no answers yet either. 

[trents]

Steve, celiac disease has long fingers. A host of other medical problems can be spinoffs of celiac disease. There are several other forum participants of late with gluten-related maladies who have struggled with vertigo as you do.

I would offer three pieces of advice:

1. Focus on truly purging gluten from your diet. Educate yourself on how widely gluten is used by the food industry and the terms that may disguise it's presence. For instance, did you know that practically all canned soups will have gluten as an ingredient, even tomato soup? And did you know that gluten is a primary ingredient in most soy sauces. It can also be found in may chocolate syrups. It can be present in the meds, vitamins and supplements you take.

2. Give it time. It can take up to a year of true gluten-free eating in order for the gut to heal and to see a major impact on other medical issues tied to celiac disease. Longer if you cheat or are careless.

3. Realize that not every health issue can be tied to gluten. Seek medical help for your vertigo. Have tried the Epley maneuvers? 

[Steve6090]

35 minutes ago, CassidyGrace said:

Hi Steve. My daughter with Celiac's and down syndrome is dizzy a lot, still has lots of stomach pain and complains of various aches and pains mostly in her legs. We have no answers yet either. 

I’m so sorry this is happening to her. It’s just awful. I don’t wish it on anyone and of course doctors have made me feel crazy for the last 3 years telling them something is definitely  off with me while they tell me I’m fine. So finally a doctor told me something but don’t known if related to celiac or not .

[Steve6090]

25 minutes ago, trents said:

Steve, celiac disease has long fingers. A host of other medical problems can be spinoffs of celiac disease. There are several other forum participants of late with gluten-related maladies who have struggled with vertigo as you do.

I would offer three pieces of advice:

1. Focus on truly purging gluten from your diet. Educate yourself on how widely gluten is used by the food industry and the terms that may disguise it's presence. For instance, did you know that practically all canned soups will have gluten as an ingredient, even tomato soup? And did you know that gluten is a primary ingredient in most soy sauces. It can also be found in may chocolate syrups. It can be present in the meds, vitamins and supplements you take.

2. Give it time. It can take up to a year of true gluten-free eating in order for the gut to heal and to see a major impact on other medical issues tied to celiac disease. Longer if you cheat or are careless.

3. Realize that not every health issue can be tied to gluten. Seek medical help for your vertigo. Have tried the Epley maneuvers? 

Yes i have had Epley meneuver done a lot. This go around they did it and said they fixed it but I still feel very off balanced /dizzy/ foggy and very out of it. They just keep telling me to do vertigo therapy which I have done and it doesn’t really change. I just feel like they are missing something and I’m going to just croak over and die. My brain fog is so bad sometimes with the dizziness (not so much vertigo) that I feel like I’m going to pass out. It’s Just very frustrating 

[BuddhaBar]

Oh yes, still has some vertigo after my Christmas glutening. My head is not spinning, but I lose my balance everytime I move my head too quickly. I'm still pretty newly diagnosed (may 2019) so I still makes mistake, but I'm the ataxia-type so I have to be reaaaaally careful because eventually ataxia can cause permanent nerve damage.
If you have vertigo caused by gluten you might be the ataxia-type too. Google gluten ataxia. It's scary s$#&. You might have it. 

[Steve6090]

3 hours ago, BuddhaBar said:

Oh yes, still has some vertigo after my Christmas glutening. My head is not spinning, but I lose my balance everytime I move my head too quickly. I'm still pretty newly diagnosed (may 2019) so I still makes mistake, but I'm the ataxia-type so I have to be reaaaaally careful because eventually ataxia can cause permanent nerve damage.
If you have vertigo caused by gluten you might be the ataxia-type too. Google gluten ataxia. It's scary s$#&. You might have it. 

How did you get diagnosed ataxia type ? My GI doc told me after endoscopy yep you have classic celiac damage so you are celiac eat gluten free for 1 month and come back and see me that’s it . Do I need to go to different doc that knows celiac specifically? Thanks for all this info I was only diagnosed 2 days ago so it’s really new to me. My husband and kids (my name is tiffany despite my user name ) just don’t understand the pain and misery I’m in and they probably think I’m just dramatic but I feel super sick all day everyday,

[BuddhaBar]

I don't think there is a test for ataxia. I just know based on my symptoms. I know now that symptoms involving the nerves and brain were my first symptoms of celiac. The doctor thought I had MS. I get the same symptoms when I get glutened now too, but not as severe. Symptoms: unsteady gait, pins and needles, burning pains, "electric shocks" and vertigo. 

[GFinDC]

Hi Tiffany,

Sometimes they find UBO's (unidentified bright objects) on the brain in ataxia patients.  They can show up on an MRI.

Dr. Hadjivassiliou

Nuerological symptoms without gastro symptoms
http://www.ncbi.nlm.nih.gov/pubmed/20170845

Another thing to check is vitamin/mineral levels.  Nerves are impacted by malabsorption just like other body organs.

[VictoriaC]

19 hours ago, Steve6090 said:

How did you get diagnosed ataxia type ? My GI doc told me after endoscopy yep you have classic celiac damage so you are celiac eat gluten free for 1 month and come back and see me that’s it . Do I need to go to different doc that knows celiac specifically? Thanks for all this info I was only diagnosed 2 days ago so it’s really new to me. My husband and kids (my name is tiffany despite my user name ) just don’t understand the pain and misery I’m in and they probably think I’m just dramatic but I feel super sick all day everyday,

Tiffany, I totally feel your pain. I’ve been sick for literally years. I’ve lost jobs and been unable to work due to being sick all the time. I don’t even have a diagnosis yet but I know this is what I have. My doctor has been zero help. I asked about being tested and she said just don’t eat gluten. If nothing else know that you are not alone! This seems like a great group to be a part of. 

[Steve6090]

5 hours ago, VictoriaC said:

Tiffany, I totally feel your pain. I’ve been sick for literally years. I’ve lost jobs and been unable to work due to being sick all the time. I don’t even have a diagnosis yet but I know this is what I have. My doctor has been zero help. I asked about being tested and she said just don’t eat gluten. If nothing else know that you are not alone! This seems like a great group to be a part of. 

I’m sorry you have lost jobs that’s sounds horrible. If I didn’t have a good job that provides sick time that I earn with each paycheck I would probably be in same boat.If I was you I would try to get a new doc. I have been sick for about 8 years but the last 4 of them really sick. So For the past 4 years I was literally told nothing is wrong with you maybe you have anxiety or stress (related to job im a police dispatcher) so was told it probably related to that. I was told multiple times all your blood work is fine . I had to be my own advocate and tell them no something is wrong run more tests. I was the one that asked for colonoscopy , endoscopy,food allergy test,and complete blood work ( different from just the normal one ) this bloodwork checks mercury and metals in blood and wheat and gluten etc to be done. This is when they finally saw some red flags. Keep being pushy cuz that’s what I had to do. You know your body and know when something is off. 

[Scott Adams]

8 hours ago, VictoriaC said:

Tiffany, I totally feel your pain. I’ve been sick for literally years. I’ve lost jobs and been unable to work due to being sick all the time. I don’t even have a diagnosis yet but I know this is what I have. My doctor has been zero help. I asked about being tested and she said just don’t eat gluten. If nothing else know that you are not alone! This seems like a great group to be a part of. 

It's a bit depressing hearing that after 25 years of hard work on this site, that the best some doctors can do when you're diagnosed is to tell you not to eat gluten, which is exactly what they told when I got diagnosed. Back then there was basically zero information on the Internet about celiac disease. At least now there is a lot of info online, but given how common the disease is it's a shame that many doctors don't do more to guide their patients to a healthy gluten-free diet.

I doubt they would only tell patients who were newly diagnosed with diabetes that they "just need to take insulin," and send them off...but that is exactly what most of them do to their celiac patients.

[Posterboy]

10 hours ago, Steve6090 said:

I’m sorry you have lost jobs that’s sounds horrible. If I didn’t have a good job that provides sick time that I earn with each paycheck I would probably be in same boat.If I was you I would try to get a new doc. I have been sick for about 8 years but the last 4 of them really sick. So For the past 4 years I was literally told nothing is wrong with you maybe you have anxiety or stress (related to job im a police dispatcher) so was told it probably related to that. I was told multiple times all your blood work is fine . I had to be my own advocate and tell them no something is wrong run more tests. I was the one that asked for colonoscopy , endoscopy,food allergy test,and complete blood work ( different from just the normal one ) this bloodwork checks mercury and metals in blood and wheat and gluten etc to be done. This is when they finally saw some red flags. Keep being pushy cuz that’s what I had to do. You know your body and know when something is off. 

On 1/13/2021 at 7:48 PM, Steve6090 said:

Hi,

  I have just been diagnosed with celiac disease but have been suffering stomach pain, joint pain and pretty much every symptom for the past 3 years and just now getting a doctor to finally listen and test me appropriately. My question is I have severe vertigo and dizziness/off balance and wondering if anyone else has symptoms like this. I also have bpv (benign postional vertigo  in right ear but bpv usually last 20 secs every once in a while. I have it 24 hrs a day. I’m so miserable and maybe changing my diet will help vertigo just wondering is anyone else has this issue. Thanks 

Steve,

Stress commonly depletes us of B-Vitamins!

They are used to help us  make energy in the body especially Thiamine with Magnesium as its Co-Factor.

See this study entitled "Thiamine and fatigue in inflammatory bowel diseases: an open-label pilot study"

https://pubmed.ncbi.nlm.nih.gov/23379830/

See this study about Magnesium's connection to Vertigo....

https://www.livestrong.com/article/519671-about-magnesium-deficiency-vertigo/

One or Both might be your trigger for your Vertigo...

Magnesium is easiest to take as a Magnesium Glycinate with meals.....

This will help your body use Thiamine more effectively....

Here is study of Vertigo in a Celiac that was helped by Thiamine supplementation.

Entitled "Rare cause of central vertigo (in Celiac's)  of metabolic origin due to vitamin B1 aka Thiamine deficiency: Case Report"

https://med-read.org/journals/medread-journal-of-neuroscience-and-neurological-disorders/fulltext/rare-cause-of-central-vertigo-of-metabolic-origin-due-to-vitamin-b1-deficiency-case-report

Find you a Fat Soluble B-1 to take like Benfotiamine in the Diabetic section because they (fat soluble forms) have much higher bioavailability.

Or you can take Allithiamine or Lipothiamine with meals preferably with Mangesium Glycinate or Citrate.

Again always with meals to improve absorption!

Most people will show improvement in 4 to 6 weeks if this your underlying cause of your Vertigo.

I hope this is helpful but it is not medical advice.

Posterboy,

[Jessi Lynn]

I had vertigo for 4 years and migraines for many years before being diagnosed. I had stabbing stomach pains that finally got me to a gi and finally after a month got a diagnosis. Once I went gluten free the roaring in my ears stopped, vertigo went away and my migraines have declined dramatically. I hope this will be the case for you. I could barely function when I got vertigo it could last hours. I even went through vestibular therapy.