Inflammation and Menier’s disease link?

[MagsM]

I am a 58yo female and I have recently been diagnosed with Ménière’s and I know I have some inflammation. Having researched Menier’s from a functional medicine perspective there are a number of clinicians who see a strong link with celiac/gluten sensitivity. I am looking to eliminate triggers as regular vertigo attacks are completely debilitating and brain fog is severe. There is a family history of celiac. I had my bloods done to check but my TtIGA is less than .02 so possible IgA deficiency? My folate is low and am now on folic acid supplement. My Ferris is also on the low side and blood total protein is low indicating inflammation and malabsorption. 
I will see my GP again next week and am wondering what I should request as next step diagnosis? Endoscopy? I live in Ireland where celiac is prevalent so I’m hoping no issue requesting additional diagnostics. 

[Scott Adams]

Your situation sounds challenging, and it’s great that you’re taking a proactive approach to uncovering potential triggers for your Ménière’s symptoms. Given your family history of celiac, low folate, ferritin, and total protein (all of which can hint at malabsorption), and your possible IgA deficiency, further investigation is absolutely warranted.

Since your tTG-IgA was extremely low (<0.02), IgA deficiency is a strong possibility—this can cause false negatives on standard celiac blood tests. The next steps should include:

1. Total IgA Level – This will confirm whether you have an IgA deficiency. If so, your GP should order IgG-based celiac tests (e.g., DGP-IgG or tTG-IgG).
2. Endoscopy with Biopsies – Even if blood tests are inconclusive, an endoscopy (with multiple duodenal biopsies) is the gold standard for diagnosing celiac disease, especially since you have symptoms and lab markers suggesting malabsorption.
3. Additional Nutrient Testing – Since you already have low folate and ferritin, checking other deficiencies (B12, vitamin D, zinc, etc.) may help build the case for intestinal damage.

Given that Ireland has high celiac prevalence, your GP should be open to further testing. If they’re hesitant, emphasize your family history, IgA deficiency risk, and debilitating neurological symptoms (vertigo and brain fog are recognized in some gluten-sensitive cases).

In the meantime, you might consider a strict gluten-free trial after completing diagnostics, as going gluten-free beforehand could obscure test results. Some people with gluten sensitivity (even without full celiac) see improvements in inflammation-driven conditions like Ménière’s.

Wishing you clarity and relief—keep advocating for yourself!

[trents]

Welcome to the forum, @MagsM!

A "total IGA" test should have been ordered along with the tTG-IGA in order to check for IGA deficiency. Certainly, an endoscopy with biopsy would be the most direct route to investigate the possibility of celiac disease. But if the physician is unwilling to provide a GI referral for that or if that means an endoscopy is months and months out because of scheduling congestion, ask your primary doc to order the total IGA as well as the DGP-IGA and DGP-IGG tests.

You could also be dealing with NCGS (Non Celiac Gluten Sensitivity) but your vitamin/mineral deficiencies from the blood work suggest there is malabsorption going on such as we see with celiac disease.

Whatever the case, do not begin a gluten free diet until all testing, whether blood antibodies or endoscopy/biopsy are complete. Going gluten free before testing is complete will invalidate the testing.

[knitty kitty]

Welcome to the forum, @MagsM,

I had Meniere's.  Meniere's is caused by deficiencies in Thiamine, Niacin, and Vitamin D.  Celiac Disease causes malabsorption which affects all the essential vitamins and minerals. The B vitamins work in concert together like an orchestra.  Having a Folate deficiency suggests other B vitamin deficiencies as well.  Folate needs Pyridoxine B6 and Thiamine B1 to work properly with Cobalamine B12.  Doctors are not required to take many courses in nutrition, and often don't recognize deficiency symptoms or how to correct them.  Blood tests are not an accurate measurement of vitamin deficiencies inside cells.  Low iron correction requires copper and zinc as well as Thiamine and Riboflavin.   

Yes, anemia can affect the production of antibodies and cause false negatives on tests for Celiac.  Diabetes and Thiamine deficiency can also cause false negatives.  An endoscopy with biopsy would be a more accurate method of diagnosis for you.  

I studied Nutrition before earning a degree in Microbiology because I wanted to know what the vitamins were doing inside the body.  Vitamins are chemical compounds that the body cannot make, so we must get them from food and supplements.  After a few vertigo episodes and suddenly going deaf for a while, I researched and found that supplementing with  Thiamine in the form TTFD (tetrahydrofurfuryl disulfide), Niacin and Vitamin D resolved the issue.  

Please ask your nutritionist for further vitamin deficiency tests.  A B Complex, TTFD, Vitamin D should help you recover quickly.  

Keep us posted on your progress!

[MagsM]

Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done.

Do you think I should request Vitamin B shots to get me started? 

My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like?

I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those?

I’m curious if you managed to go into full remission from your Ménière’s disease?

Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond. 

[knitty kitty]

Oh, @MagsM,

Sorry you had that happen with Niacin.  500mg is the maximum amount of Niacin one should take.  Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time.  All the B vitamins work together in concert.  Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol.  Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians.

Has your doctor tested you for H. Pylori?  An infection by H. Pylori can be tested for by your doctor.  H. Pylori can cause low tTg IgA results, too.  

I would hold off on the microbiome test for now.  Your microbiome is going to change when you go gluten free.  Your microbiome will change when you start taking Thiamine.  Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones.  Thiamine in the form Benfothiamine promotes intestinal healing, too.  Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome.  This is the best diet to heal and recover, IMO.  

If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results.  Same thing will happen if you take B vitamin shots. 

The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins.  There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex.  All the B vitamins work together in concert.  Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together.  Do not buy supplements containing Thiamine Mononitrate because it is not biologically active.  It is very hard for the body to utilize.  Most of it (70%) passes out unused.   

Yes, my Meniere's disease has not returned.  I was deficient in Vitamin D.  I took high doses of Vitamin D 3 to correct the deficiency quickly.  I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine.  TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily.  TTFD helps the Vagus nerve function.  The Vagus nerve regulates the ears and balance, and also the digestive system.  I like Allithiamine by Ecological Formulas.  I also like Thiamax by Objective Nutrients.  You should have improvements within a hour with TTFD.  TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg).  

I hope this helps give you some direction to take on your journey!

[leenora]

Hi Mags, I was diagnosed almost 4 years ago at 57y.o, also of Irish heritage, my mom's from Co. Galway. Have your doctors run an immune globulin panel. My IgA was undetectable & that is what the usual bloodwork for celiac relies on. For example, my tTG IgA was below 2 & deamidated Gliadin IgA was 5, both in normal range. In other words, you do not have celiac. I HAD TO ASK THE DOCTOR TO RETEST ME  using IgG versions of both tests! When he did tTG IgG = >100 ( range 0-5) & the deamidated gliadin IgG = 219 (range 0-19).  I also had 2 copies of the gene on 23&me. It is sad that you have to tell the doctors what to test for, but you have to do your research & be your own advocate. And this was a gastroenterologist! Celiac is not very common where I live, so I guess it is not on their radar. Also before the second set of bloodwork I ate as much gluten as possible for 6 weeks. I wanted the tests to be definitive. it was torture & my husband said  "Stop doing this to yourself!" But I needed to know. when the GI did a biopsy,my small intestine was almost completely smooth. So very definitely Celiac Disease.

Best of Luck with your testing & diagnosis. It is better to know & be able to regain your health. I struggled for 17 years to find out what was wrong.

[leenora]

P.S. I also suffer from Meniere's and Hashimoto's thyroid disease, osteopenia since 40 y.o. These all were diagnosed before the Celiac Disease! And I believe it is all interconnected.

[MagsM]

Hi Leenora, thanks so much for sharing your journey. Yes, I am based in Ireland and I think the primary care docs should know better here. Like yourself my IGA was undetectable.  I do not have any major GI symptoms as a result my doc would only order total IGA as the next step and not IGG - so frustrating. I am ready to start a gluten free diet which will hopefully help with nutrient absorption and ultimately overall health. As someone who has already gone through a breast cancer journey I would like to be assured that my immune system is working optimally. My big concern is around Alzheimers as my Mom was diagnosed with Meniers at my age and developed memory decline in her mid 70s. She has an Alzheimer's diagnosis but her neurologist thinks it is more short term memory loss. Since neurological health is a concern of mine I have ordered the B vitamins recommended by kitty kitty on this thread. I have upped my VitD supplements and haven't had a vertigo attack in 2 weeks. I agree with your observation that these things are all connected - they likely are very much connected with gut health. I am also planning on ordering germline genetic testing to check my pre-dispositions. 

[knitty kitty]

@MagsM and @leenora,

Thiamine improves Alzheimer's.   Thiamine has anticancer effects in high doses.  Thiamine helps improve Hashimoto's.  I'm linking information you may find helpful.  

Evaluation of neuroprotective role of benfotiamine in Alzheimer's disease model: A randomized control study

https://pubmed.ncbi.nlm.nih.gov/40176579/

Supplemental thiamine as a practical, potential way to prevent Alzheimer's disease from commencing

https://pmc.ncbi.nlm.nih.gov/articles/PMC8319660/

Benfotiamine and Cognitive Decline in Alzheimer’s Disease: 

https://pmc.ncbi.nlm.nih.gov/articles/PMC7880246/

Mega-Dose Thiamine: Beyond Addressing “Deficiency”

https://www.eonutrition.co.uk/post/mega-dose-thiamine-beyond-addressing-deficiency

The Missing Link to Thyroid Fatigue

https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/

The Effects of Thiamine on Breast Cancer Cells

https://pubmed.ncbi.nlm.nih.gov/29914147/

Yay, Mags for improving your Meniere's!  I'm so happy you've had improvement with Vitamin D!

[MagsM]

I have copied in a summary of my latest bloodwork from ChatGPT below. My GP will not refer for any further investigation and given that I do not have gastric distress symptoms it doe seem that I do not have classic Celiac but may have some malabsorption issues. I am now considering just going forward with a gluten free regimen and tracking symptoms. I will see the Consultant Otolaryngologist tomorrow and will share these results. I have already ordered the B-Complex and Benfotiamine and will start that regimen soon. Any feedback and your amazing expertise truly appreciated...

Key Immunological and Nutritional Findings

Test Result Normal Range Interpretation

Tissue Transglutaminase IgA.   <0.2 U/mL.      <7.0 =            Negative   Strongly negative — rules out celiac disease

Endomysial Antibodies (IgA).    <10                                         Negative   Supports absence of celiac disease

Total IgA                                       1.94 g/L            0.65–4.21.   Normal

IgG / IgM                                      8.47 / 2.04 g/L                      Normal.      Normal immune status

✅ These results do not indicate immunodeficiency. IgA is sufficient to make celiac testing valid, and IgG/IgM are in normal range.

⚠️ Nutritional / Absorption Concerns

TestResultNormal RangeInterpretation

Folate (B9)        3.1 ng/mL.          3.1–20.5.       Low-normal — borderline deficient

Total Protein.    63 g/L.                 64–83          Slightly low

Ferritin.              33 ng/mL.           15–150.        Normal, but low-normal; could reflect depleted stores

📌 This constellation of results suggests possible subtle malabsorption, suboptimal nutrient intake, or a functional GI issue — even in the absence of celiac disease.

🔄 Implications for Ménière’s and Autoimmunity

While there's no evidence of classic autoimmune disease or celiac, subtle immune dysregulation and non-celiac gluten sensitivity (NCGS) cannot be ruled out.
Your symptoms and lab pattern could still fit with an immune-mediated or inflammatory trigger for Ménière’s flares.
Borderline nutrient deficiencies (folate, protein) may affect inner ear function or neuronal stability, indirectly exacerbating symptoms.
Nutrient absorption issues might stem from subclinical GI inflammation, dysbiosis, or food sensitivities.

💬 Suggested Talking Points for Consultant

Could a functional immune or inflammatory mechanism be driving Ménière’s in the absence of overt autoimmunity?
Does a trial of immunomodulatory therapy (e.g., steroids, antihistamines) make sense if flares persist despite dietary changes?
Would referral to a GI specialist or dietitian be appropriate, given borderline folate, protein, and symptom profile?
Continue gluten-free diet trial for 4–6 weeks to assess symptomatic improvement, even in absence of celiac serology.
Explore possibility of non-IgE food sensitivities or mast cell activation, especially if symptoms are episodic and food-triggered.

 

 

 

[trents]

@MagsM, It concerns me that your physicians seem to be preoccupied with the concept of "classic celiac disease".  That suggests to me their knowledge of celiac disease may be dated and they don't have a concept yet for the "silent celiac" who doesn't manifest with classic GI symptoms.

[MagsM]

Hi Trents, Thanks for the feedback. Yes, I do have concerns about NCGS. Would this show up if I did the endoscopy testing?

[trents]

No. There is no damage done to the gut lining with NCGS.

[Scott Adams]

In silent celiac disease there is damage, but your doctor does not seem to realize that many people have silent celiac disease with little or no obvious symptoms. For those with this condition the health risks are the same as those who have "classic" celiac disease.

[MagsM]

Thank you all for your feedback. I did see the Consultant Otolaryngologist today and unfortunately she is not doing any research into potential functional immune or inflammatory mechanism that could be driving Ménière’s. My Mom was diagnosed with Meniere's at my age (58) and then did develop Alzheimer's in her 70's. The consultant mentioned that my Mom's Alzheimer's could have been triggered from the hearing loss due to the Ménière’s. She then went into worst case scenarios which freaked me out entirely (full hearing loss and cochlear implants)! Apparently it is very important to keep those neural pathways (hearing, balance vision etc.) fully functional to stave off potential brain disease like Alzheimer's.

I really would like to figure this out and unfortunately do not have a good functional medic in Ireland who would help me in the diagnostic process. 

Consultant today has put me on a betahistine 3x per day for the next 6 months. I am also thinking that I will go gluten free and ramp up the B-complex and Benfothiamine (already ordered). I am still trying to source the tetrahydrofurfuryl disulfide (TTFD).

I'll see where I am in a few months, will also test the gut microbiome and see what those results look like. 

Once again, I can't thank you all enough - your amazing knowledge and generous time and guidance is truly appreciated!!

 

[trents]

Alzheimer's is caused by a buildup of beta amyloid plaque tangles in the neurons. I don't see how that would be influenced by hearing loss. I can see where sensory deprivation could contribute to mental decline in indirect ways but Alzheimer's is a disease with a biochemical base.

[MagsM]

Hi Trents, yes classic Alzheimer's is caused by plaque build up but the diagnosis of Alzheimer's often covers other types of cognitive decline including mild cognitive impairment, short term memory loss and vascular dementia which are all of the issues that my Mom has. She does not show any plaque build up on MRI. 

[trents]

Okay, so the term was being used loosely and informally, then.

[nataliallano]

Hi I just recently had being diagnose with Meniers after a long year of vertigo, brain fog, ear pressure, tinnitus and anemia. I went to several doctors in USA and Mexico. Did all the test for my ear/ brain, MRI and nothing comes up. The last doctor gave me a combo with betahistine a diuretic and an anticonvulsive. I almost past out. 

Nothing seems to calm my symptoms. I started a gluten free diet and I have some days better than others but I'm completely lost. I don't know where to go next. 

What should I do next? 

[knitty kitty]

@MagsM,

Try Elliott Overton's site in England... He has a lot of information on his site about Alzheimer's and thiamine and sells TTFD as Thiamax.  (Good stuff!)

https://www.eonutrition.co.uk/

[knitty kitty]

Welcome to the forum, @nataliallano,

Have you been tested for Celiac Disease before going gluten free?   You may want to continue with a diet containing gluten until all testing us done.  At least get a genetic test to see if you have any of the common genes needed to develop Celiac Disease.  

Do you have any gastrointestinal symptoms?  Some people don't, but they do have symptoms outside of the gastrointestinal tract, like Hashimoto's thyroiditis and Meniere's. 

[nataliallano]

Hi Kitty, I know I'm celiac from a blood test from 15 years ago but I wasn't strict with the diet. I don't have gastro symptoms. But i am having vertigo ringing ear and ear pressure brain fog. Should a confirm with genes test?

[knitty kitty]

No, not if you've got an official diagnosis already.  

Let's continue our conversation on this thread...

Thanks

[trents]

@nataliallano, whatever else can be said, you need to get serious about eating gluten free. Lots of people with celiac disease are like you. We call them "silent celiacs". They have few or no GI symptoms and falsely assume no damage is being done to their body so continue to consume gluten. Neurological damage is one of them.

Edited July 8 by trents