Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Burning Tongue, Mouth Sores


busterb1

Recommended Posts

busterb1 Newbie

This is going to sound so crazy...... About 2 months ago I developed sores on my tongue and the roof of my mouth. Soon after my tongue began to burn (as if scalded with hot water, but all the time). I also have a red strip down the middle of my tongue and the tip of my tongue is all red. My internal med Dr. had no idea what was wrong so she told me to gargle with Maalox and referred me to a dermatologist. In the meantime, I decided to try the gluten free diet just for a few days (my mom has celiac, so I thought I'd give it a whirl). My mouth felt better. I began eating gluten again and three days later I went to the dermatologist.

The dermatologist was fascinated and said he rarely sees this condition. He called it Median Rhomboid Glossitis. The normal "bumps" on your tongue get red and inflamed. He drew blood, tested for Anemia, B12 deficiency, Lupus and Celiac (only because I told him that my Mom had it and I had noticed some improvement). A week went by, still on the gluten and the pain worsened. It got so bad that I couldnt even talk without immense pain.

The Dr.said all the tests were negative. He prescribed some special mouthwash to numb my mouth and told me to wait it out. I started the self-imposed gluten free diet again 3 days ago and my mouth is improving again. I also have more energy. I will give it awhile to see if the tongue clears up (it still looks funny with the red stripe, but doesnt burn and sores are gone).

Is this crazy or what? Anyone else have this? Would being off gluten for 4 days prior to the blood test cause a negative? I just have a gut feeling about this. The Dr's will never believe me.


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



Celiac.com Sponsor (A8-M):



Green12 Enthusiast
This is going to sound so crazy...... About 2 months ago I developed sores on my tongue and the roof of my mouth. Soon after my tongue began to burn (as if scalded with hot water, but all the time). I also have a red strip down the middle of my tongue and the tip of my tongue is all red. My internal med Dr. had no idea what was wrong so she told me to gargle with Maalox and referred me to a dermatologist. In the meantime, I decided to try the gluten free diet just for a few days (my mom has celiac, so I thought I'd give it a whirl). My mouth felt better. I began eating gluten again and three days later I went to the dermatologist.

The dermatologist was fascinated and said he rarely sees this condition. He called it Median Rhomboid Glossitis. The normal "bumps" on your tongue get red and inflamed. He drew blood, tested for Anemia, B12 deficiency, Lupus and Celiac (only because I told him that my Mom had it and I had noticed some improvement). A week went by, still on the gluten and the pain worsened. It got so bad that I couldnt even talk without immense pain.

The Dr.said all the tests were negative. He prescribed some special mouthwash to numb my mouth and told me to wait it out. I started the self-imposed gluten free diet again 3 days ago and my mouth is improving again. I also have more energy. I will give it awhile to see if the tongue clears up (it still looks funny with the red stripe, but doesnt burn and sores are gone).

Is this crazy or what? Anyone else have this? Would being off gluten for 4 days prior to the blood test cause a negative? I just have a gut feeling about this. The Dr's will never believe me.

It's not crazy! I am not just sensitive to gluten, I have many food intolerances/allergies and a common symptom I have is sores in the mouth and tongue. For me I find a big difference when I stay away from all processed foods, dairy, sugar, gluten, corn, etc. I don't seem to get the sores in my mouth when I am eating a fresh all whole foods diet free of chemicals, preservatives, and other food additives.

jerseyangel Proficient

Wow--that's interesting. I used to get a burning feeling in my mouth--like the whole inside of my mouth was on fire. That has not happened once since I went gluten-free. I do believe it is connected.

TCA Contributor

My son had something called a geometric tongue before going gluten free. It just looked like sores all over his tongue. He was too young to complain about it, though. It's clear now that he's gluten-free. That is a symptom I have read about in various places.

  • 2 years later...
AshleyNB001 Newbie

I have the same thing. I have had mouth sores for 10 years and used to go down inside me throat while in my mouth and now they are only on my tongue. I suffered with them for four years then about 6 years ago my asthma/Allergy specialist presribed Paddock 10mg Troche. They helped them. You suck on three tablets a day for a couple of days then they disappear. You must remember though after you have these attacks to change your toothbrush so that it doesn't come back. If you are wondering what they are, they are to treat fungus. Now it probly isn't a fungus but a reaction from the celiac disease. People who have this disease get mouth sores. These pill are a miracle worker and the best part is they have no taste. I have these tablets with me all the time just in case I start to get them. I now only get them every 2-3 months and then I use this treatment and they go away. I have been recently diagnosed with Celiac and my great uncle (who died from not treating his celiac) used this treatment, too. I hope this works because when I was got them I couldn't go to school for 2 weeks at a time. They are a life saver. Make sure they are the tablets because they can come in powder form and the tablets work better. Also they won't have any side effects because they are not absorbed in the blood stream.

Once again the medication is Paddock 10mg---use 3 times daily till it is all cleared up...also when you have these attacks stay away from salty foods, fruit, juice. Altoids and Chloraseptic spray help with itchness and burny feeling. Altoids help with the treatment from the tablets and Choraspetic spray helps keep the tongue numb.

Get some fast...,

Ashley

Open Original Shared Link.

AshleyNB001 Newbie
It's not crazy! I am not just sensitive to gluten, I have many food intolerances/allergies and a common symptom I have is sores in the mouth and tongue. For me I find a big difference when I stay away from all processed foods, dairy, sugar, gluten, corn, etc. I don't seem to get the sores in my mouth when I am eating a fresh all whole foods diet free of chemicals, preservatives, and other food additives.

It can give you a false negative if you went gluten free before you blood tests!

LuvMoosic4life Collaborator

OMG! I though this was my own post when I read this!!!!! I had this exact same thing in febuary, soars, followed by a burning tounge, making it hard for me to even talk! I went to the helath center at school and they just told me type II herpes: canker soars...these were not canker soars!!! It would come and go and eventually a friend recommended to try going gluten-free, it worked! I havent been diagnosed though...and I still have occasional redness on my tounge and litte dots that look like soars, but nothing like what i had before.....


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



Celiac.com Sponsor (A8-M):



  • 3 years later...
Cnj Newbie

I believe there is absolutely a connection!! I've had the tongue, mouth & throat sores for most of my 38 years of life. A couple of times diagnosed as canker sores or a herpes virus, then fishered tongue, & geographic tongue. I have Crohn's Disease, & after lots of specialists & GI Dr's etc it was told to me that it makes perfect sense....as we now know that celiacs and IBD often go hand in hand, and that they affect your intestinal tract-which starts in the mouth! It also goes to show, if that's what your tongue looks like, imagine what the rest of your body is going thru as a response to what we are consuming!

Chase Corin Newbie

OMG this is a wake up for me too, I have had terrible mouth sores for years now, they come and go but they are all over my mouth along my gums, top of mouth under tongue and on tongue.

My doctor keeps giving me antibiotics to swish and spit and it never works I keep telling him, and toothpaste and mouthwash can agrivate it.

I am also B12 insufficient and anemic. My doctor treats every symptom i have as a seperate and exclusive thing but I think he needs to put these things together to come up with a comprehensive diagnosis.

  • 2 weeks later...
AHopewell Newbie

I first had geographic tongue around age 10. Doc told my mom (who is 100% celiac and in denial)some people just have it and it wasn't a big deal. 25 years later... no more geographic tongue, mouth sores, or burning tongue!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,263
    • Most Online (within 30 mins)
      7,748

    Carol mintuck
    Newest Member
    Carol mintuck
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      The 10g of gluten daily doesn't have to come only from bread. It can include pasta, cake, wheat-based cereal, etc. I wouldn't obsess over it. The main point is, don't skimp on gluten. Eat normal amounts of wheat products just like someone would who isn't dealing with a gluten disorder. If you really want to make sure you are getting 10g of gluten daily, go to a health food store and buy a bag of pure gluten. Weigh 10g out on a food scale and mix it in with your beverages. My wife use to buy gluten powder at the health food store and add it to the dough when she was making bread - in the days before I was diagnosed with celiac disease, that is.
    • xxnonamexx
      Thanks for the insights. So 4 weeks I should eat 4 slices of whole wheat bread while maintaining gluten free diet otherwise then schedule blood tests? Would eating the gluten damage my body intestine already if its bad? What do I need to look for in a whole wheat bread to find out if its 10g of gluten. I don't want to take too much. I want to be able to tolerate it as well otherwise this test will be hard.
    • trents
      Your physician will likely refer you for a GI consult for the purpose of an endoscopy with biopsy of the small bowel lining to check for the damage to the villi caused by celiac disease. As Christiana said, keep eating generous amounts of gluten until all testing is over or you will invalidate any future testing or procedures.
    • xxnonamexx
      If I feel better after eliminating gluten from my diet I am curious if I get diagnosed via blood test what would that tell me differently besides avoiding gluten? Also if I had to do an Endoscopy and took biopsy how would that help me besides to tell me avoid gluten strictly? Also I read about finding a dietician but again what would they tell me differently besides avoid gluten? Thanks I am new to this and not diagnosed officially yet but trying to get a better understanding. I read so much about gluten staying in your body for weeks, years after you eat it etc. Makes me afraid to go out to eat for dinner to avoid cross contamination or travel or if I avoid gluten and all of a sudden get sick b/c gluten was in my body months earlier.
    • trents
      Welcome to the forum, @xxnonamexx! First, some terminology clarification. There is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). NCGS is also referred to simply as gluten sensitivity. You will also hear the term "gluten intolerance" which is a generic term for either. But in the real world, these terms often get used indiscriminately so there is confusion. With Celiac disease, which is an autoimmune disorder, damage is done to the villous lining of the small bowel when gluten is ingested. Celiac disease and NCGS share many of the same symptoms, especially in the GI category. There is no test for NCGS. Celiac disease must first be ruled out. So, it seems to me that you could have either celiac disease or NCGS and until you undergo a proper gluten challenge and get testing done you will have to live with the ambiguity.  Guidelines for the "gluten challenge" for those already having embarked on the gluten free diet but wanting to get tested have been revised in the past year or so. The current guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks in order to give valid test results. Personally, I think two weeks is too short and I would go for four weeks. About 8% of celiacs cannot tolerate gluten free oatmeal because the oat protein "avenin" is so similar to gluten. Adult celiacs who practice a consistently free gluten free diet can expect substantial healing of the SB villous lining in 1-3 years. We do hear anecdotal reports of people with healed villous linings being able to return to gluten consumption but they are just that - anecdotal. I do not endorse that approach.
×
×
  • Create New...