Dizziness and fatigue still 8+ months post-diagnosis...is this normal?

[Eric P.]

I was diagnosed with Celiac Disease 8+ months ago, overall have seen improvement in gut issues, however, I have continued to experience dizziness (feels as if I am on a boat upon movement) and severe fatigue each and every day. My symptoms are by far worse in the morning, as well as worse following physical activity. I have been passed around from specialist to specialist (multiple GI doctors, endocrinologist, cardiologist, neurologist, dietitian), and none have come up with an answer as to why I am still experiencing these symptoms.

I am aware full intestinal recovery can take up to 2 years post-diagnosis, however, I was wondering if anyone else has experienced these symptoms and how long it took for them to finally feel better? As one can imagine, I'm drained from trying to function daily with these symptoms concurrently, as well as I'm becoming very discouraged despite staying positive to the best of my abilities.

As far as diet goes, I am very strict with myself and have not had any type of gluten product in my household since time of diagnosis. I have had other food allergy testing performed, although all results come back insignificant for all other foods (eggs, corn, dairy, etc.). I am currently on a 6 week low FodMAP diet as prescribed by my dietitian, but have yet to see any positive results. The only other supplements I have recently began are riboflavin, feverfew, and magnesium, all prescribed by my neurologist for migraine prevention.

I am open to any and all possible suggestions and encouragement! Thank you!

[cyclinglady]

Welcome!  
 

At first thought, Mal de debarquement syndrome, came to mind, but it is unlikely.  I bet you have not been on a boat lately.  Chances are this is part of your celiac disease.  Have you heard of gluten ataxia?  
 

Celiac disease is a systemic autoimmune disease that can start in the gut.  It can affect many systems including the brain and nervous system. While a majority of celiacs deal with GI issues, many have suffer from dermatitis herpetiformis (antibodies reside in the skin causing a blistering, itchy rash) and newly discovered....gluten ataxia which affects the brain. 
Learn more here:

https://www.mayoclinic.org/diseases-conditions/ataxia/symptoms-causes/syc-20355652
 

Not many doctors know about gluten ataxia.  There is a doctor in England who has conducted the most research.  Here is one article, but you might share this information with your doctor and have a conversation about it:

https://pn.bmj.com/content/practneurol/4/2/124.full.pdf
 

Okay.   Maybe you have traditional celiac disease and gluten ataxia.  You can have both.  You can also have another autoimmune disease  too.  What would I do?  Stay the gluten-free course.  Give it more time.  Members report that brain and nervous system issues are hard to resolve.  While the gut can literally heal in days, nerves can not.  People with DH and gluten ataxia report that they must not eat out and they tend to avoid a lot of processed foods, even gluten-free ones.  They are super sensitive.  Make sure your meds and supplements are gluten free.  
 

I hope this helps.  Hang  in there!  

[knitty kitty]

EricP,

Before I was diagnosed with Celiac Disease, I experienced severe vitamin and mineral deficiencies.  I had symptoms like yours.

Several doctors asked if I drank alcohol.  When I replied emphatically no, my doctors would frequently shrug their shoulders and walk away.  So I went home and started researching why they would ask me this repeatedly.

Blessed with a degree in microbiology, I found Thiamine deficiency, which usually occurs in alcoholics, has the exact same symptoms.  Alcoholism causes malabsorption of thiamine, similar to the malabsorption Celiac Disease causes.

I began taking high dose thiamine and the symptoms have resolved.  Single vitamin deficiencies are not common in Celiac Disease.  Usually malabsorption causes deficiency in all the  eight B vitamins, Vitamin C, and minerals, like magnesium and iron.  The B vitamins all work together and supplementing all of them together produces better results.

I suggest you ask your doctors to test for deficiencies.  

Thiamine can affect the vestibular system causing balance problems and fatigue.  Thiamine deficiency causes ataxia.

Here are some studies done on thiamine deficiency....

https://www.researchgate.net/publication/273200384_Vestibular_signs_of_thiamine_deficiency_during_the_early_phase_of_suspected_Wernicke_encephalopathy

And...

https://europepmc.org/article/med/28365885

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6082353/

And...

https://pubmed.ncbi.nlm.nih.gov/30107022/

And....

https://www.frontiersin.org/articles/10.3389/fneur.2018.00141/full

And....one with Celiac Disease....

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

Thiamine deficiency, Wernicke's Encephalopathy and ataxia can occur in Celiac Disease.

High dose Thiamine is required to resolve symptoms.  Thiamine is a water soluble B vitamin with no toxicity.  An IV of thiamine could resolve your symptoms.  

I urge you to discuss this with your doctors.  They need to think outside of the box.  Thiamine deficiency does not occur in alcoholism only.  Thiamine deficiency can occur in Celiac Disease.  

Been there, done that.

Knitty Kitty

  On 9/15/2020 at 7:40 PM, Eric P. said:

I was diagnosed with Celiac Disease 8+ months ago, overall have seen improvement in gut issues, however, I have continued to experience dizziness (feels as if I am on a boat upon movement) and severe fatigue each and every day. My symptoms are by far worse in the morning, as well as worse following physical activity. I have been passed around from specialist to specialist (multiple GI doctors, endocrinologist, cardiologist, neurologist, dietitian), and none have come up with an answer as to why I am still experiencing these symptoms.

I am aware full intestinal recovery can take up to 2 years post-diagnosis, however, I was wondering if anyone else has experienced these symptoms and how long it took for them to finally feel better? As one can imagine, I'm drained from trying to function daily with these symptoms concurrently, as well as I'm becoming very discouraged despite staying positive to the best of my abilities.

As far as diet goes, I am very strict with myself and have not had any type of gluten product in my household since time of diagnosis. I have had other food allergy testing performed, although all results come back insignificant for all other foods (eggs, corn, dairy, etc.). I am currently on a 6 week low FodMAP diet as prescribed by my dietitian, but have yet to see any positive results. The only other supplements I have recently began are riboflavin, feverfew, and magnesium, all prescribed by my neurologist for migraine prevention.

I am open to any and all possible suggestions and encouragement! Thank you!

Expand Quote  

 

[Kate333]

Hi Eric.  I, too, have struggled with similar issues (severe fatigue, lightheadedness, brain fog) and have consulted with specialists and have had tests (which always come back normal) and vitamin/mineral tests (also normal).  Like you, I'm also a newbie (diagnosed last fall, adopted strict gluten-free diet in March).  Despite that, I still have GI issues and, more troublesome, those others you noted.  But I'm also someone who has struggled with lifelong depression, anxiety, insomnia, and I think those are definite factors in how I feel physically.  I have come to realize that, surprisingly, it is not at all unusual for mood issues to influence how your body functions and feels.  Here is a very interesting, informative article about the link between mood and physical issues:  https://www.bustle.com/p/19-physical-tolls-you-didnt-realize-anxiety-can-take-on-your-body-16954747. 

I wish I had a simple answer for you (and myself) but, at this point, I think all we can do is keep up with the gluten-free diet routine and try to hope for the best.  As others here have said, healing can be a long journey.  

Best of luck to you!

 

 

[knitty kitty]

Every one of those symptoms listed in that article can be traced to vitamin and mineral deficiencies.

Celiac Disease causes malabsorption which results in malnutrition and vitamin and mineral deficiencies.

 

[knitty kitty]

Further information.....

Your body uses vitamins and minerals inside the tissues of your muscles and organs.  Your body will rob the tissues of their vitamin supply in order to put it in the blood stream and send it to the brain to keep your brain working.  

Blood tests are not a good measurement of the vitamin status within the tissues.  The limits for a deficiency are set too low. 

You can have a deficiency, yet show no deficiency levels on blood tests because of this.  By the time a blood test shows a deficiency, you can have detrimental health problems.

The eight B vitamins and Vitamin C are water soluble.  Any excess is excreted.  There is not a toxicity level with these because they are so easily excreted.  

The B complex vitamins should be taken together because they all need each other to function properly.  

 

[Awol cast iron stomach]

In addition to advice given above about ensuring proper vitamin and minerals. I personally have to watch the B's,  vitamin D, and magnesium. Also that I stay hydrated and electrolyte balanced.

Over the years I have experienced beyond gi issues symptoms of ataxia, autonomic nervous system issues, peripheral neuropathy, and orthostasis issues. I see a chiropractor/accupuncturist to help me manage my symptoms.

Good luck

 

[DJFL77I]

ya i got the dizziness..  doesn't feel like spinning dizzy.. just some off balance dizzy...

I first noticed it a week or so after my stomach issues began..  lasted for a few days... then went away...    then came back again....

It was worse in the beginning..  when walking I would feel like I would become off balance for a second...   

My doctor referred me to an ear doctor to check for inner ear problem..

You can also get a brain scan I guess..

I'm almost 3 months off gluten...  which i guess isn't too long yet.. see how it goes 

 

[paisleydaisy]

This was one of my major issues before changing diet. The sudden dizziness spells without being lightheaded. It still happens sometimes and I want to pin it on another aspect of diet (because once you can do that with gluten and some stuff, it's tempting to boil everything down to diet, I find, and that's just...not quite accurate some of the time) but it doesn't seem to be consistent with anything. It's rare now so I haven't looked into it but the constant experience of it faded after about 6 months gluten-free. 
It came back when I was breastfeeding my son and had an electrolyte imbalance at one point though so it could be something around that. I had realllllly low sodium and drink a lot of water?