Symptoms

[KSS1918]

Hi everyone, I am 23 years old and I was recently diagnosed with celiac. I think I’ve been having it for at least 2 years but I had a lot of weird symptoms. Now I just want to make the connections and see if they are somehow related… has anyone had throat and ears pain without any infection? It’s been 4 months since I have ears pain like they are burning and also weird throat sensations, like pain and feeling of the throat closing up and mostly discomfort. I’ve been to more than 4 doctors and they can’t find anything wrong with my throat/ears and it’s so disturbing. Has anyone had this before? 🙏 

[trents]

What you describe sounds like it could be a neurological effect caused by a vitamin deficiency. Vitamin and mineral deficiencies typically accompany celiac disease because of the damage it does to the villous lining of the small bowel. This is the area of the intestinal track where all of our nutrition is absorbed and the constant inflammation over time in thus area caused by celiac disease wears down the billions of finger like projections that make up the mucosal lining. This greatly reduces the efficiency of nutrient absorption. We commonly recommend that newly diagnosed celiacs start taking a high potency B-complex, 5000IU of D3 daily, 400mg of magnesium glycinate daily (the glycinate form is important), and zinc. 

Edited April 8, 2024 by trents

[KSS1918]

Thank you for your response! Sorry, but by neurological, you mean physiological? Cause I had some doctors telling me that, but it was before even being diagnosed with celiac. Now I don’t know if it’s my anxiety or a real symptom… the ears pain bother me most, it feels like a ear infection but nothing shows up…

[trents]

29 minutes ago, KSS1918 said:

Thank you for your response! Sorry, but by neurological, you mean physiological? Cause I had some doctors telling me that, but it was before even being diagnosed with celiac. Now I don’t know if it’s my anxiety or a real symptom… the ears pain bother me most, it feels like a ear infection but nothing shows up…

By neurological I mean caused by nerve dysfunction. Possible physical damage to a nerve pathway that serves the areas you experience pain in or unhealthy nerves due to nutritional deficiencies from celiac disease.

[KSS1918]

So sorry to bother again… i just reviewed my blood work and all are normal. Including the magnesium, calcium, zinc etc… should I still take them even if the blood tests are normal? Thank you🙏

[trents]

Blood levels of vitamins and minerals don't necessarily reflect what is getting into the tissues and cells. Yet, the only way to address that problem is increase the concentration in the blood. I would take the vitamins and minerals I suggested for several months and see if it helps. If not discontinue them. They will not harm you. Low vitamin D is a chronic problem in many areas of the world because most populations spend so much time in doors and don't get enough exposure to sunlight as our ancestors did who worked outside. It is especially a problem in northern areas and in cloudy climates.

[knitty kitty]

@KSS1918, welcome to the forum!

Yes, I've experienced tinnitus and difficulty swallowing (dysphagia).  My Vitamin D level was very low and I was low in B Complex vitamins, especially Thiamine B1.  

Thiamine insufficiency affects the nerves in the head and neck causing dysphagia, tinnitus and hearing loss.  Being low in other B vitamins, Riboflavin B2, Niacin B3, and Cobalamine B12, can also influence tinnitus.  Too much caffeine and a diet high in carbohydrates can influence tinnitus as well.

Thiamine is not routinely tested.  Blood tests for many B vitamins are not an accurate measurement of how well a vitamin is working inside cells.  Vitamin deficiency symptoms can occur before there's a low level seen in blood tests.  Most thiamine deficiencies are diagnosed postmortem.  Thiamine insufficiency needs to be corrected quickly.  

The World Health Organization recommends taking high dose Thiamine if a deficiency is suspected.  Improvement is seen within hours or a few days.  

Doctors are not trained in nutritional deficiencies.  Thiamine deficiency symptoms outside of alcoholism are different and many of the symptoms are overlooked.  

My thiamine deficiency got very serious.  My tinnitus progressed to hearing loss and deafness.  I had difficulty swallowing and felt like my throat was closing up.  My doctors didn't recognize my symptoms as Thiamine deficiency, although several asked if I drank alcohol.  When I insisted I wasn't drinking, they shrugged their shoulders and dismissed me.  Sad.  I had studied Nutrition before earning a degree in Microbiology, so I knew how vitamins work inside cells.  I started high dose Thiamine with over-the-counter thiamine supplements.  My symptoms improved within an hour.  Thiamine is safe and nontoxic even in high doses.  No harm, no foul for taking Thiamine and looking for improvement.  

Thiamine interacts with every one of the other seven B vitamins, so a B Complex is needed, as well as magnesium to make enzymes with Thiamine.

The gluten free diet can be low in essential vitamins and minerals.  Add to that our poor absorption caused by damage to the villi in the small intestine from Celiac.  Supplementation is beneficial in Celiac Disease.  

Hope this helps!

References:

Serum Vitamin D Concentration Is Lower in Patients with Tinnitus: A Meta-Analysis of Observational Studies

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10047354/

Acute Bilateral Deafness as the First Symptom of Wernicke Encephalopathy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7966433/

Therapeutic role of Vitamin B12 in patients of chronic tinnitus: A pilot study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4918681/

Relationship Between Diet, Tinnitus, and Hearing Difficulties

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7664714/

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet

https://pubmed.ncbi.nlm.nih.gov/19154566/