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

Mouth Ulcers?


Kirstie

Recommended Posts

Kirstie Apprentice

Just wondering if anyone on here suffers with mouth ulcers? I am constantly getting them, normally the day after (sometimes just a few hours after) I accidentally eat gluten, normally with all the other symptoms.

After eating gluten by mistake a week or so ago, I got a mouth ulcer, it cleared up but now more keep developing. I don't think I'm eating gluten as I feel great and have no other symptoms?

Just wondering if anyone else has this problem and if so what helps them?

Thanks!


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



Celiac.com Sponsor (A8-M):



saintmaybe Collaborator

Where are they specifically? The corners of your mouth or on the inside lower lip, or....different sores are indicative of different things, which is why I ask. Corner of mouth usually means general nutritional deficiencies with emphasis on b and d vitamins. Inside the mouth is a flare up of systemic herpes simplex 1, which most people have, and can be triggered by gluten exposure. It can also be vitamin c deficiency.

MitziG Enthusiast

I got them regularly before dx, and after they seemed to pop up randomly, sometimes in response to glutening, but sometimes just randomly. Its been months now since I have had any, so perhaps my nutritional status is better? Or maybe they just aren't as bothersome once you have been gluten-free awhile. Can't really say- but sure am glad they are finally gone!

Gemini Experienced

Where are they specifically? The corners of your mouth or on the inside lower lip, or....different sores are indicative of different things, which is why I ask. Corner of mouth usually means general nutritional deficiencies with emphasis on b and d vitamins. Inside the mouth is a flare up of systemic herpes simplex 1, which most people have, and can be triggered by gluten exposure. It can also be vitamin c deficiency.

I think that saying most people have herpes simplex 1 is a huge overstatement. They do not. Mouth sores are extremely common in Celiac Disease and are caused by nothing else but inflammation and gluten exposure. I had them for years due to undiagnosed Celiac, to the point where they thought I had cancer.

Not that either......it was gluten. I have been gluten-free for 7 years and haven't had one since I went gluten free.

Strawberry-Jam Enthusiast

I get them when I'm sick and apparently when glutened i also get sore gums and teeth so it's all related i think.

climbmtwhitney Apprentice

Hi Kirstie,

Yes! Mouth ulcers (i.e. canker sores) can be from gluten. I got them chronically (3-5 at a time regularly) as a child and I have Celiac. That was before diagnosis. My Celiac daughter also had them chronically before diagnosis. I don't get them anymore if accidentally glutened, but my daughter sure does.

Here's a link to research on the subject.....

Open Original Shared Link

There were a bunch of articles a couple of years ago about this. I remember one suggesting the pediatricians test all patients with chronic canker sores for Celiac.

Jillian

saintmaybe Collaborator

I think that saying most people have herpes simplex 1 is a huge overstatement. They do not. Mouth sores are extremely common in Celiac Disease and are caused by nothing else but inflammation and gluten exposure. I had them for years due to undiagnosed Celiac, to the point where they thought I had cancer.

Not that either......it was gluten. I have been gluten-free for 7 years and haven't had one since I went gluten free.

There have been studies done demonstrating upwards of 70% infection rates. Babies can become infected from their mothers either via the birth canal or from breastfeeding. It's not a stretch to say that someone might be having a flare up of the virus due to gluten exposure, sine the entire immune system is revved from gluten inflammation. The way the virus works is that cells are constantly infected, but only sometimes create a disease process. There is no stigma attached to having herpes simplex.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Just wondering if anyone on here suffers with mouth ulcers? I am constantly getting them, normally the day after (sometimes just a few hours after) I accidentally eat gluten, normally with all the other symptoms.

After eating gluten by mistake a week or so ago, I got a mouth ulcer, it cleared up but now more keep developing. I don't think I'm eating gluten as I feel great and have no other symptoms?

Just wondering if anyone else has this problem and if so what helps them?

Thanks!

I used to get them regularly before going gluten-free. I almost never get them now, occasionally if I react to accidental cross contamination I will feel one starting up but they tend to go away pretty quickly.

saintmaybe Collaborator

Hi Kirstie,

Yes! Mouth ulcers (i.e. canker sores) can be from gluten. I got them chronically (3-5 at a time regularly) as a child and I have Celiac. That was before diagnosis. My Celiac daughter also had them chronically before diagnosis. I don't get them anymore if accidentally glutened, but my daughter sure does.

Here's a link to research on the subject.....

Open Original Shared Link

There were a bunch of articles a couple of years ago about this. I remember one suggesting the pediatricians test all patients with chronic canker sores for Celiac.

Jillian

That was such a great article! That's exactly what I had, apthous ulcers that were so painful I could barely open my mouth to eat or talk. I haven't had issues with either those or cold sores sine I went gluten free, and I am pretty strict about cc.

bartfull Rising Star

I never got them UNTIL I went gluten-free. Now I seem to get them every few days, even though my very limited diet includes no gluten nor any chance of CC.

Lfrost Explorer

My family has had canker sore chronically. My mother had hers clear up (or at least significantly improve) when she started using toothpaste without sodium lauryl sulfate. No such luck for me though. I had them very bad, to the point that they ulcerated to the bone on my gums (my dentist had never seen this before and my doctor thought it might be cancer--it was not). I would go in every other day to have my dentist cauterize the sores to help them heal. :(

I am brand new to the celiac forum since we were determining what was wrong with my son and found he is allergic to wheat and other things. I actually go in for my Dr. appointment this Tuesday to go over my bloodwork (he had tested me for celiac and other things).

Honestly, the only thing that worked for me was smoking. Whenever I try to quit, I get them bad. when I smoke, they are gone. I really would like to quit for good, so I am almost hoping mine is gluten related because I am going to try gluten free after all my testing is done regardless of the results. My mother is also going to get tested (she has ulcerative colitis, hypothyroidism, etc).

Best of luck to you. You could at least try to cut out sodium lauryl sulfate if all else fails!

IrishHeart Veteran

I sometimes had them inside my mouth and big honking ones on my bottom lip.

My honeymoon pics show me with a doozy while in Ireland and drinking all that Guinness. :huh:

Once gluten-free after diagnosis, they are GONE.

Last December, I was accidentally glutened and guess what popped up right away? Yup, a giant sore on my bottom lip.

I do not believe they suggest the presence of herpes simplex for most of us. In fact, I was tested for herpes antibodies and it was NEG. (the majority of people have the antibodies anyway)

Mine were from gluten.

Strawberry-Jam Enthusiast

p.s. one thing that helped me to get rid of some massive ones that came with a flu was putting acidophilus on them. I bought the acidophilus pills in the store, broke open the powder into my mouth and left it there overnight each night. they were much smaller over about three days and mostly gone by four or five.

that stuff did taste pretty weird tho :/

birdie22 Enthusiast

I've had them ever since I was a little kid. The only time I didn't have them was the 2x's I was pregnant. I figured it was then hormonally caused. But, once I went gluten free they went away. During a 7 day gluten challenge I got 3. Now when I get trace exposure I get tiny ones that pop up and that's my 1st clue.

saintmaybe Collaborator

An article on cold sores, gluten intolerance, the immune system and herpes simplex from the Livestrong foundation. summary: gluten intolerance causes a low immune system causes a herpes outbreak in SOME people. In others, it's a topical reaction to gluten. Cold sores are different than canker sores, which are purely the result of a screwed up immune system.

Open Original Shared Link

IrishHeart Veteran

I have to disagree with this conclusion, I'm sorry.

In fact, that article is so poorly written and disjointed, and sprinkled with random statements that I found it worthless. I cannot conclude that gluten intolerance CAUSES herpes simplex from what was written there. ? where was the clinical data? It said: "the herpes simplex 1 virus initially causes cold sores, also known as fever blisters, but many factors contribute to recurrences."

This is mixing apples and oranges and does not mean anything.

Cold sores are very different from mouth ulcers which are known as

aphthous stomatitis. And the herpes simplex virus is very different from recurrent mouth sores (aphthous stomatitis)

Although the process in idiopathic recurrent aphthous ulcers is usually self-limiting, in some individuals, the ulcer activity can be almost continuous. Similar ulcers can be noted in the genital region. Beh

lcarter Contributor

I used to get these frequently before starting a gluten free + dairy free + low sugar diet. About that time I was told to add Bronson's "Super B" vitamin complex and it has really made a difference. Now I hardly ever have mouth ulcers...and the few times they have popped out, they were much milder and didn't last near as long. So, I would suggest talking to your doctor about adding this. Digestive problems usually lead to poor vitamin absorption in the small intestine, so added vitamins and minerals are important for optimizing health.

JNBunnie1 Community Regular

I used to get these aphthous ulcers inside my mouth or throat regularly, and they cleared completely after going gluten free. I got them again once when I tried using a particular toothpaste, which did not gluten me, so I have to think chemical sensitivity must also be involved.

Those things SUCK! I used to eat a bunch of tomato sauce when I got them, it hurts like the dickens at first but drastically reduced general pain and longevity.

saintmaybe Collaborator

For advice and support, I direct you to a thread from our own members in 2009, who talked about the prescriptions they used in treating their own mouth sores.

The drugs mentioned are abreva, and valtrex. Valtrex is an actual antiviral used specifically for herpes simplex and zoster infections, and can be obtained easily from a primary care physician. Apparently a one day treatment is enough to make them vanish. Abreva can be bought over the counter, and was actually the first antiviral approved for over the counter sale in the U.S.

I should also note that gluten intolerant/ Celiac persons in this case did get tested for herpes simplex and came back POSITIVE. Given the general population infection rates, just because one person doesn't have it, doesn't mean YOU don't have it.

As far as gluten intolerance and herpes simplex:

"Because side effects common in gluten intolerance, such as stress, chronic illness and dietary problems can cause cold sore recurrences, you may have an increased risk of developing cold sores if you're gluten intolerant. If you find that certain foods act as trigger foods for cold sores, check to make sure they don't contain hidden gluten. Some sources of gluten you may not have considered include rice syrup, gum bases, malt vinegar, corn starch, baking powder and some soy sauces, fillers and colorings.

Read more: Open Original Shared Link

"

-Seems pretty much like the same advice given to every member, every day on this forum.

"Getting frequent cold sores does not necessarily mean that you have gluten intolerance. Cold sores are common; between 45 and 80 percent of people have had at least one outbreak of cold sores, according to the National Institute of Dental and Craniofacial Research. Gluten intolerance is also relatively common, affecting around one in every 133 Americans, according to the National Institute of Diabetes and Digestive and Kidney Diseases. Sores inside your mouth associated with gluten intolerance are more likely to be canker sores than cold sores, although cold sores can occur inside the mouth, usually on the roof of the mouth or on the gums.

Read more: Open Original Shared Link

-What this is saying is that you're probably getting a CANKER SORE, not a cold sore. It's also saying that just because you have Celiac disease, you're not immune from getting cold sores (caused by herpes), and that getting contaminated or eating the wrong things are not helping you in that regard.

Finally, I'll quote a source from the National Institute of Dental and Craniofacial Research

<b>What causes fever blisters?</b>

Fever blisters are caused by a contagious virus called herpes simplex. There are two types of herpes simplex virus. Type 1 usually causes oral herpes, or fever blisters. Type 2 usually causes genital herpes. Although both type 1 and type 2 viruses can infect oral tissues, more than 95 percent of recurrent fever blister outbreaks are caused by the type 1 virus.

Herpes simplex virus is highly contagious when fever blisters are present, and the virus frequently is spread by kissing. Children often become infected by contact with parents, siblings or other close relatives who have fever blisters.

A child can spread the virus by rubbing his or her cold sore and then touching other children. About 10 percent of oral herpes infections in adults result from oral-genital sex with a person who has active genital herpes (type 2). These infections, however, usually do not result in repeat bouts of fever blisters.

Most people infected with the type 1 herpes simplex virus became infected before they were 10 years old. The virus usually invades the moist membrane cells of the lips, throat or mouth. In most people, the initial infection causes no symptoms. About 15 percent of patients, however, develop many fluid-filled blisters inside and outside the mouth 3 to 5 days after they are infected with the virus. These may be accompanied by fever, swollen neck glands and general aches. The blisters tend to merge and then collapse. Often a yellowish crust forms over the sores, which usually heal without scarring within 2 weeks.

The herpes virus, however, stays in the body. Once a person is infected with oral herpes, the virus remains in a nerve located near the cheekbone. It may stay permanently inactive in this site, or it may occasionally travel down the nerve to the skin surface, causing a recurrence of fever blisters. Recurring blisters usually erupt at the outside edge of the lip or the edge of the nostril, but can also occur on the chin, cheeks, or inside the mouth.

The symptoms of recurrent fever blister attacks usually are less severe than those experienced by some people after an initial infection. Recurrences appear to be less frequent after age 35. Many people who have recurring fever blisters feel itching, tingling or burning in the lip 1 to 3 days before the blister appears.

What causes a recurrence of fever blisters?

Several factors weaken the body's defenses and trigger an outbreak of herpes. These include emotional stress, fever, illness, injury and exposure to sunlight. Many women have recurrences only during menstruation. One study indicates that susceptibility to herpes recurrences is inherited.

********What I got from this*********

I really didn't know about the disease transmission in children. Tres interesante! It doesn't specifically discuss gluten exposure in there, but I can easily see how gluten exposure would make one more susceptible to a cold sore outbreak.

**************************************

From the same article:

"<b>Canker Sores</b>

Recurrent canker sores afflict about 20 percent of the general population. The medical term for the sores is aphthous stomatitis.

Canker sores are usually found on the movable parts of the mouth such as the tongue or the inside linings of the lips and cheeks. They begin as small oval or round reddish swellings, which usually burst within a day. The ruptured sores are covered by a thin white or yellow membrane and edged by a red halo. Generally, they heal within 2 weeks. Canker sores range in size from an eighth of an inch wide in mild cases to more than an inch wide in severe cases. Severe canker sores may leave scars. Fever is rare, and the sores are rarely associated with other diseases. Usually a person will have only one or a few canker sores at a time.

{Canker sores graphic}

Most people have their first bout with canker sores between the ages of 10 and 20. Children as young as 2, however, may develop the condition. The frequency of canker sore recurrences varies considerably. Some people have only one or two episodes a year, while others may have a continuous series of canker sores.

<b>What causes canker sores?</b>

The cause of canker sores is not well understood. More than one cause is likely, even for individual patients. Canker sores do not appear to be caused by viruses or bacteria, although an allergy to a type of bacterium commonly found in the mouth may trigger them in some people. The sores may be an allergic reaction to certain foods. In addition, there is research suggesting that canker sores may be caused by a faulty immune system that uses the body's defenses against disease to attack and destroy the normal cells of the mouth or tongue.

British studies show that, in about 20 percent of patients, canker sores are due partly to nutritional deficiencies, especially lack of vitamin B12, folic acid and iron. Similar studies performed in the United States, however, have not confirmed this finding. In a small percentage of patients, canker sores occur with gastrointestinal problems, such as an inability to digest certain cereals. In these patients, canker sores appear to be part of a generalized disorder of the digestive tract.

Female sex hormones apparently play a role in causing canker sores. Many women have bouts of the sores only during certain phases of their menstrual cycles. Most women experience improvement or remission of their canker sores during pregnancy. Researchers have used hormone therapy successfully in clinical studies to treat some women.

Both emotional stress and injury to the mouth can trigger outbreaks of canker sores, but these factors probably do not cause the disorder."

******************

There are some great pictures in there that can help you determine which type of sore you have. I know I get both canker sores and cold sores, at different times. I did not know cankers were caused by a B12 deficiency. That probably explains why I never got them, once I started supplementing with B vitamins.

I also get angular cheilitis, which is another one that is a sign of B vitamin deficiencies. That one causes sores at the corners of your mouth only, and man, it's extremely painful. By far, worst of the three for me.

Just for giggles here are the Wikis on cold sores, canker sores, and angular cheilitis.

1) Open Original Shared Link

2) Open Original Shared Link

3) Open Original Shared Link

All of these articles have an enormous reading list if you are so inclined, but I prefer to avoid argumentation through jargon. Suffice to say, these three articles probably cover the type of sore you're experiencing.

Things to be aware of:

1)Gluten exposure

2)B12 deficiency

3)Zinc deficiency

4)B2 deficiency

5)Iron deficiency anemia

Basically, if you're still getting cold or canker sores and are strictly gluten free, then there is something nutritionally deficient in your diet or you are reacting to another food. Eat whole foods, get plenty of rest and relaxation, wear sunscreen especially on the face, and supplement where necessary to make up for dietary shortfalls. Pretty much the same advice given to every new member of the forum.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.