Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Symptoms

KSS1918
 Share

Recommended Posts

KSS1918 Newbie
KSS1918
Posted

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? 🙏 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

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 by trents
KSS1918 Newbie
KSS1918
Posted
  • Author

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 Grand Master
trents
Posted
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 Newbie
KSS1918
Posted
  • Author

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 Grand Master
trents
Posted

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 Grand Master
knitty kitty
Posted

@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/

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.