Severe severe mouth pain

[Charlie1946]

Hi, I'm new, thank you for accepting me and I apologize if this has been asked before. 
I didn't realize till recently that Celiac disease affects your teeth and gums, I have always had weak teeth and bad gums. And for going on 3 months now, I have been having such severe, throbbing, burning pain in my mouth, teeth and tongue. I have spent most of the time curled up in a ball, sobbing with ice packs on my face. It's only the left side. I have been treated for sinus infections and thrush. I had a canker sore on the roof of my mouth, my tongue was coated and I had the crusty stuff in the corners of my mouth. No one knows what it is, or how to cure it. Anyone else have this?

[trents]

Welcome to the celiac.com family, @Charlie1946! I have not experienced what you are going through except possibly accelerated loss of enamel and receding gums, to some extent, anyway. But I can tell you that thrush and canker sores have been reported by other members of this online community. Let me ask you some questions.

First, how long ago were you diagnosed with celiac disease?

Second, are you consistent with the gluten-free diet?

Third, have you recently been on a course of antibiotics? Thrush often follows on the heels of being on a course of antibiotics because the antibiotics kill off the good bacteria the keep yeast and fungi in check.

[knitty kitty]

Welcome to the forum, @Charlie1946,

How long have you been diagnosed with Celiac disease?

Do you take any nutritional supplements? Vitamins? Herbal medicine?

Do you eat processed gluten free facsimile foods?

Is your diet high in carbohydrates?  

Many vitamin deficiencies can contribute to poor oral health.  Vitamin C, Cobalamine B12, Thiamine B 1, Riboflavin B 2 and Pyridoxine B6, to name a few.  

For pain, a combination of Thiamine, B12 and Pyridoxine B 6 have analgesic properties.  They work together to relieve pain better than over-the-counter pain relievers, imho.  

[Charlie1946]

11 minutes ago, trents said:

Welcome to the celiac.com family, @Charlie1946! I have not experienced what you are going through except possibly accelerated loss of enamel and receding gums, to some extent, anyway. But I can tell you that thrush and canker sores have been reported by other members of this online community. Let me ask you some questions.

First, how long ago were you diagnosed with celiac disease?

Second, are you consistent with the gluten-free diet?

Third, have you recently been on a course of antibiotics? Thrush often follows on the heels of being on a course of antibiotics because the antibiotics kill off the good bacteria the keep yeast and fungi in check.

Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think,  I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when I thought I had a sinus infection. So I got a z pack. Then I noticed my tongue was coated and it was white except right down the middle which was more brown and crusty, like the corners of my mouth. I also have dry mouth and I went way too long before I started treating it. So then I had some kind of huge pill and Nystatin mouthwash. My mother in law's new husband ( they live upstairs) started complaining of exactly the same symptoms as me. He went to urgent care, they said it wasn't thrush, it was shingles. We both went to our dentist's for cleanings, I don't have insurance so I really couldn't tell they cleaned my teeth at all. But she said my mouth looked good, all cleared up. I had a day and a half of no pain and then it came right back. So I got more pills and miracle mouthwash. There are times it feels like dry socket and times it feels like it's bleeding but it's not. I don't see any gum or facial swelling, I did see a couple of tiny ulcers on my bottom lip, roof of my mouth is still sore, and my tongue and cheeks are still a little coated. I am just at a loss. My mother in law's husband, they  took swabs and called back a week later and said it was a new herpes variant virus that is going around but not contagious. He was cured after a week! And I'm going on 3 months 😭

[Charlie1946]

@knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade.  Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice, I will try it all for sure, because everything I have tried OTC has done nothing 

[trents]

@Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general. 

It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices.

What is causing your swallowing problems? Is it the thrush?

[knitty kitty]

Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads!

Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.  

I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.  

  I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.  

I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses.

I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried. 

Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.  

I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health.

I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   

[Charlie1946]

1 hour ago, trents said:

@Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general. 

It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices.

What is causing your swallowing problems? Is it the thrush?

@trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 

[Charlie1946]

@knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!! 
I have sebaceous hyperplasia too- is that related to Celiac? 
OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??

[trents]

@Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs.

Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.

Edited January 1 by trents

[cristiana]

Hi @Charlie1946

I am so sorry to hear you are suffering with this problem.   Just a few other thoughts. 

I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter. 

If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous.

If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve?

I do hope that you find relief soon.

Cristiana

[knitty kitty]

@Charlie1946,

There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues.

Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day)

Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day)

The other B vitamins are needed as well because they all work together like an orchestra.  

The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.  

Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.  

Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high.

Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.  

I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.  

Interesting Reading:

Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management

https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/

[Charlie1946]

17 hours ago, trents said:

@Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs.

Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.

@trents Thank you so much, I will try that 

[Charlie1946]

17 hours ago, cristiana said:

Hi @Charlie1946

I am so sorry to hear you are suffering with this problem.   Just a few other thoughts. 

I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter. 

If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous.

If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve?

I do hope that you find relief soon.

Cristiana

@cristiana Hi, thank you so much, I will look into those books for sure! And get bloodwork at my next appointment. I have never been told I have TMJ, but I have seen information on it and the nerve issue while googling this devil plague in my mouth. Thank you so much for the advice!

[cristiana]

Hi @Charlie1946

You are very welcome.   I agree wholeheartedly with @knitty kitty:

 "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants."

I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face. 

I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.  

During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working.

PS  How to make a neck roll with a towel:

https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 

[Russ H]

23 hours ago, Charlie1946 said:

Hi, I'm new, thank you for accepting me and I apologize if this has been asked before. 
I didn't realize till recently that Celiac disease affects your teeth and gums, I have always had weak teeth and bad gums. And for going on 3 months now, I have been having such severe, throbbing, burning pain in my mouth, teeth and tongue. I have spent most of the time curled up in a ball, sobbing with ice packs on my face. It's only the left side. I have been treated for sinus infections and thrush. I had a canker sore on the roof of my mouth, my tongue was coated and I had the crusty stuff in the corners of my mouth. No one knows what it is, or how to cure it. Anyone else have this?

Hi Charlie,

You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too. 

Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus?

Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc. 

Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.

 

Russ.

 

Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article

[Caligirl57]

Hi Charlie,

I was living in Harrogate, UK when I was diagnosed with lichen planus in my mouth. They are very painful sores in the mouth.The dentist there told me I should get tested for celiac disease as she said there is a strong correlation between the two. I also had stomach issues. I had an endoscopy and it confirmed I have celiac disease. 
I have been on a strict gluten free diet since and have not had any reoccurring mouth sores. 
Best of luck to you.

[Charlie1946]

@Christiana ❤️ thank you! I'm getting those books!!

[Charlie1946]

On 1/1/2026 at 6:02 PM, Russ H said:

Hi Charlie,

You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too. 

Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus?

Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc. 

Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.

 

Russ.

 

Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article

Thank you @russ I still haven't figured out how to reply to these messages. I haven't been taking vitamins like I should because of the trouble swallowing. What is PPI? I take omeprazole every day. Thank you for the advice and the link! I am so grateful for all of you in this group! 

[trents]

PPI is the acronym for Proton Pump Inhibitor. Omeprazole is a PPI. PPI's work in a different way than do "H2 blockers" like Tagamet or Pepcid and different also from acid neutralizers like Tums. 

[cristiana]

@Charlie1946 You are more than welcome. 

If you are struggling with mental health do consult with a medical professional and follow their advice if they think you need medication, as I did for a while, but I hope you will find these books as helpful as I did on the road to recovery.

[Charlie1946]

@Caligirl57 hi and thank you for the reply! I have had myself scared to death over this. I am still having pain but it's not as bad. I have always had bad teeth and gums 

@trents thank you, so omeprazole is the right thing to take?

[Caligirl57]

Hi Charlie 

I also take omeprazole. It does help. I was diagnosed with fatty liver about 20 years ago. Didn’t pay any attention to it. Then 20 years later diagnosed with celiac disease that I probably had most of my life, looking back. Both of those things caused my liver to fail. I’m not a drinker. When I was diagnosed back in the states I had 30 days to live. After 3 weeks, in hospital I received a liver transplant. I was so sick I was there for 3 months. After that my kidneys went south. I was on dialysis for 8 months and on a kidney transplant list. When we received the call about an available kidney (4yrs) I was so excited! After the transplant the surgeon told my husband I had a 1 in 10 million chase for a kidney transplant as my antibodies were at 99%. Only 1 percent of the population was a match to me. I’m 1 year out from my kidney transplant and have so much energy and life left to live!  Please everyone, listen to your body and get medical advice. I wish I had sooner.
 

i hope this will inspire more people to Donate to Life. 

[trents]

39 minutes ago, Charlie1946 said:

@Caligirl57 hi and thank you for the reply! I have had myself scared to death over this. I am still having pain but it's not as bad. I have always had bad teeth and gums 

@trents thank you, so omeprazole is the right thing to take?

Okay, I got lost in the weeds here in this protracted thread. What are you taking omeprazole for? Your original thread had to do with dental, gum and thrush issues. Normally, a PPI is prescribed for people with GERD (acid reflux). How long have you been on omeprazole?

[Caligirl57]

So sorry for going off topic. I have had gerd for about 25 years. I used to take 40 mg in the morning and 40 at night . My current GP has me down to 20 mg twice a day.  I don’t have any issues on this dosage. Hope this helps. Best of luck to you!