Tongue Sores Anyone? How Do I Get Them To Go Away?

[3bears2]

I have had celiac under control for years now. A month ago I got some strange sores on the back of my tongue that seem to move around my mouth. The last week the sores at the side of my tongue have gotten really sore and very raw and almost bloody. I am not sleeping from the pain.  I have seen countless doctors and nobody knows what it is and I have used many different topical rinses and meds, Nothing has helped and now it is more sore. A fourth of the side of my tongue is very soft and cracked and bloody to the touch. I am just so sad and cry a lot from discouragement. My dentist friend thinks that it is celiac related. I just don't know how to get it better. Any ideas for helping are very much appreciated. The dentist friend told me to take a B vitamin so I am and no change. I feel so sad. and need your advice.

[HavaneseMom]

Wow, that sounds painful and I'm sorry to hear your doctors haven't been able to help you yet. I would keep on them though, especially if it continues to progress.

I did have tongue sores for years before diagnosis, and they are 90% gone now. One tip I read here (I think from KarenG) is to use a SLS free toothpaste. The relief in tongue pain and sores that this change has made has been life altering for me. Here are a few that are out there, I use the Sensodyne Pronamel:

 

Today, there are many companies which make natural toothpastes free from Sodium Lauryl Sulfate. Some of the most popular are:

• Tom’s of Maine toothpaste
• Cardamon-fennel Herbal Toothpaste
• Rembrandt Premium Whitening Mint Toothpaste
• Jason Natural Cosmetics Toothpaste
• Squigle Enamel Saver Toothpaste
• Sensodyne ProNamel Mint Essense Toothpaste
• Auromere SLS Free Herbal Toothpaste
• Kiss My Face Kids Berry Smart Toothpaste
• Xyliwhite platinum mint

The other thing you might want to look in to is iron deficiency anemia. It can cause a swollen tongue, which your teeth will then rub on and cause sores. My tongue was huge by diagnosis and I didn't actually realize it because it had happened so gradually. My teeth were rubbing on the side of my tongue constantly.

[LauraTX]

Some vitamin deficiencies and having too much of certain vitamins can cause things like mouth sores.  Too much folic acid can cause mouth sores, so you may want to have your doctor pull blood levels of things to check all of that out.  Lack of B12 and anemia as mentioned above, can cause sores. Since us Celiacs are prone to deficiencies and usually supplement, sometimes things can get out of whack.  

[greenbeanie]

My tongue got really swollen and painful during my gluten challenge (not bloody, though), and it didn't return to normal after. My doctors and dentist had no idea what to make of it, and no rinses, mouthwashes, etc. helped. I was already using a SLS-free toothpaste. It turned out to be a sulfite allergy/intolerance. (Note:Sulfites are different than sulfates.) Many flours, including gluten free ones, are bleached with sulfites. This is especially true of things that contain potato starch flour, corn starch, etc. Once I finally figured this out, my allergist and I looked over my health history and realized that weird reactions I'd had for years (to mashed potatoes at restaurants but not at home, to anything with bottled lemon juice sprayed on to prevent browning, to vinegar, to dried fruit, etc.) made perfect sense.

It took months of very strict avoidance of all fermented things and bleached flours for the tongue burning and swelling to go down. Now it's much better and not painful most of the time, but still swollen enough that the edges are always scalloped from pressing against my teeth. So much better than it was a year ago, though! Avoiding sulfites for a while might be worth a try if you can't find another cause. Good luck!

[cristiana]

I attach a link that you might want to look at.

 

https://www.celiac.com/articles/21858/1/Could-that-Canker-Sore-Mean-Celiac-Disease/Page1.html

 

Do you think these lesions sound like what you have?  Pre-DX I had two really bad bouts, felt like my mouth had shards of glass in it when it was at its worse.  It was blistering, redness and sores.   Both bouts resolved (I think) upon my consuming Berrocca type vitamin supplements.

 

I thought these problems were firmly in the pre-DX past until last week and I got them on the left side of my tongue and just underneath.  I have been low battling a cold virus my little girl brought back from school, plus v. busy.   I thought that was the cause.  Then I remembered that just before I got them I did my teeth twice (not sure why!) with my son's toothbrush. He consumes gluten.   I threw his tootbrushes away as I don't want him to get anything from me but I wondered if I had got something from him.  Could a graze from a glutenous toothbrush do this?  Not sure.

 

In all my googling I did discover canker type sores can have an association with celiac disease and other intestinal problems such as Chrons and Colitis.  

 

The other thing, of course, is that they can strike when you perhaps are just overdoing things - an otherwise healthy administrative worker in the school has just had them.

 

How long have you been taking the B12?  And are you taking it sublingually in large amounts - I gather just taking the normal daily supplements might not be as effective.

[Firsttimemama2014]

I just recently had this too! You know what cured me? I had 2 enemas, vitamin D/magnesium/probiotic supplementation, and removed ALL STRESS from my life. Namaste.

[homeschoolmama]

I have co-existing Celiac and Sjogren's and my specialist told me the mouth sores were likely due to the Sjogren's, not the Celiac.  Once I started taking the Salgen (pescription med to treat Sjogren's) to help my glands produce moisture, the mouth sores healed up.

[GF Lover]

I would second the point to look for SLS's in your Dental Products.  Also know that mouth sores can come back when your autoimmune system is flaring.  Other types of inflammation one the sides of the tongue and inside of cheeks can be from Sjogrens (lack of saliva).  It may also be something altogether different.  Start with the suggestions you've recieved in the thread and start ruling things out....just like a food diary.

 

Good Luck.

 

Colleen

[Gemini]

I have co-existing Celiac and Sjogren's and my specialist told me the mouth sores were likely due to the Sjogren's, not the Celiac.  Once I started taking the Salgen (pescription med to treat Sjogren's) to help my glands produce moisture, the mouth sores healed up.

EXACTLY!  You will have sore tongue and mouth sores from either Celiac or Sjogren's.  Mine cleared up completely with the gluten-free diet and never have come back.