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

Persistent Sore Throat for 2 Years +


jgladd21

Recommended Posts

jgladd21 Newbie

Hi, I realized that I had a serious gluten intolerance about 4-5 years ago when I was experiencing constant headaches, stomach issues, and problems with fatigue.  My primary care doctor quickly told me to try and cut gluten out of my diet for a couple of weeks to see if that was the issue and within 5 days I felt great! (Although sad that I had to give up all of the foods I loved of course).

Since then, I have had a strict gluten free diet and only have been accidentally exposed a handful of times.  I am writing because I have also had a persistent sore throat from more than 2 years now and I wonder if there is any correlation to my gluten allergy or if anyone else has insight into this.  I have been to countless ENTs, GI doctors, and had all of the tests done with no results.  Any information or suggestions would be greatly appreciated since it has gotten to the point where it has taken over my daily life because of the persistent pain.

Thanks for any help!


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

Because you've been gluten-free for two years now, and I will assume that you've been doing a very good job with your diet, probably isn't related to celiac disease or gluten sensitivity (unless you were getting regular contamination).

So you've been to ear, nose & throat specialists, and they've found nothing? One concern, which they likely would have found if you had it, would be eosinophilic esophagitis (EoE): 

or GastroesophagealReflux Disease (GERD)

or esophageal squamous cell carcinoma (but I would assume they would have caught this or you'd likely not be here now if this were the cause) :

These searches might help:

https://www.celiac.com/search/?&q=esophageal&type=cms_records2&search_and_or=and

https://www.celiac.com/search/?&q=reflux&type=cms_records2&search_and_or=and

jgladd21 Newbie

Hi Scott,

Thank you for your reply, and yes I have been checked for all of these things and also have changed my diet entirely to comply with the GERD diet as well as take a daily prescription (Dexilant) for control of acid reflux.  Sadly, none of this has made a difference, and I thought it was a long shot to think it may be related to my gluten intolerance but I'm at such a loss for where to turn next!  Again thank you for your reply and I will keep on searching.

Thanks

raspberryfirecracker Contributor

Is it the type of sore throat something like chloraseptic or a numbing cough drop would help, a sore throat like the acid burn you get at the bottom of your throat from GERD, or not an internal sore throat but an inflamed sore-lymphatic-ache around your throat that doesn't actually involve the esophagus? 

jgladd21 Newbie

This is the type that chloraseptic spray or cough drops don't really help.  It's right at the middle of my throat (basically behind the Adam's apple) and no not at the bottom I guess.  And again I've been on an intense GERD diet and also take daily medication and have had several endoscopies and it's still unexplained 😕

Scott Adams Grand Master

I wonder if your issue could be tied to low stomach acid, rather than high? I know this sounds counter-intuitive, but if the current approach isn't working, it's important to try others.

Scott Adams Grand Master

PS - Be sure to check out this thread:

 


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



Celiac.com Sponsor (A8-M):



Kate333 Rising Star

Chronic allergies/post-nasal drip, living in a very dry, desert-like climate, and/or chronic, extreme anxiety could be factors, as could simply snoring/sleep apnea/sleeping with your mouth open at night (which dries out the throat/mouth moisture/mucous linings).  You said you "had all the tests" and they found nothing.  If those tests done included an upper endoscopy and nasal/throat scope and showed no tissue damage that should put your mind at ease. 

You might try getting a humidifier and/or antihistamines, diet change and see if you get any relief.  If not, you could request a sleep study/CPAP or counseling referral.  It's amazing how many health anxiety problems manifest with physical symptoms, like body pain.     

raspberryfirecracker Contributor

That's a really good point Scott.

When you're on proton pump inhibitors and your stomach acid gets too low, it causes a rebound effect and you end up with even more stomach acid than you would've had before treatment. Our body is pretty smart like that. 

GERD for me correlated with something I was intolerant to, so it resolved after going gluten free followed by dairy free. After being dx'd with it basically my entire life. Last time I had any issue was a couple weeks ago when I had real shredded cheese on a salad, oops.

Just out of concern, if there's any conceivable way to switch the PPI out with something less invasive, maybe try--as you can already tell, they're just a bandaid for short-term turmoil, they're not designed for longterm use, and most frighteningly, multiple studies have shown people that do take them can only do so for about two years maximum before they increase your risk of death from ALL causes! I can barely believe they're legal, to be honest.

H pylori comes to mind if you've ever dealt with ulcers, as well. It alters your stomach acid production to help itself survive, is very common, you can get it just from water. Antibiotics are the treatment. Olive leaf extract works against it as well. Lots of things for you to consider! 

chellechic Newbie
On 2/1/2021 at 3:44 PM, jgladd21 said:

Hi, I realized that I had a serious gluten intolerance about 4-5 years ago when I was experiencing constant headaches, stomach issues, and problems with fatigue.  My primary care doctor quickly told me to try and cut gluten out of my diet for a couple of weeks to see if that was the issue and within 5 days I felt great! (Although sad that I had to give up all of the foods I loved of course).

Since then, I have had a strict gluten free diet and only have been accidentally exposed a handful of times.  I am writing because I have also had a persistent sore throat from more than 2 years now and I wonder if there is any correlation to my gluten allergy or if anyone else has insight into this.  I have been to countless ENTs, GI doctors, and had all of the tests done with no results.  Any information or suggestions would be greatly appreciated since it has gotten to the point where it has taken over my daily life because of the persistent pain.

Thanks for any help!

I've had long lasting sore throat when my Epstein Barr virus was high also are you maybe breathing through your mouth at night the dryness can cause sore throat as well.  

 

Beverage Proficient

Me too!  This really helped me:

  https://drjockers.com/hiatal-hernia/

We actually need acid to digest food and get the vitamins available for the upper intestines to absorb them. So don't fall for antacids, except for a short time to allow for some healing. Antacids will cause you a world of hurt if used long term. 

Putting risers at head end of your bed to elevate bed a few inches helps a lot. 

I now use a teaspoon of apple cider vinegar before any meal with protein, and DGL tablets after dinner and/or before bed.  

https://www.amazon.com/gp/product/B001IAJW0K/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

 

 

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
  • 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. - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

    2. - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

    3. - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

    4. - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

    5. - Scott Adams replied to Jmartes71's topic in Related Issues & Disorders
      2

      New issue

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,090
    • Most Online (within 30 mins)
      7,748

    LVanderbeck12
    Newest Member
    LVanderbeck12
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
    • Scott Adams
      Your experience of being medically dismissed for decades, despite a clear celiac diagnosis since 1994, is unacceptable. It is a tragic common thread in our community that the systemic failure to understand celiac disease leads to a cascade of other diagnoses—like SIBO, IBS, depression, and now the investigation of MS or meningioma—while the core autoimmune condition is neglected. The constant, severe flu-like symptoms and new neurological concerns are absolutely valid and warrant serious investigation for connections to celiac-related autoimmunity or complications like refractory disease. It is enraging that you must fight so hard to be heard. While I don't have a medical answer about MS or meningioma links, your instinct is correct: relentless symptoms require a specialist who understands celiac disease beyond the gut. Regarding the California proclamation, it is a symbolic advocacy effort; reaching out to the women mentioned may provide supportive community, but your advocacy with your local representative is the most direct action. 
×
×
  • 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.