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 Sores

Guest pdwillis

By Guest pdwillis
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

Recommended Posts

Guest pdwillis
Guest pdwillis
Posted

How common are mouth sores when you have celiac. My son gets them all the time, and we are still in the waiting game of seeing if he has celiac. Or does mouth sores mean it is another auto-immune disorder. I have tried to google some information and it shows lupus. Does lupus and celiac sometimes go hand in hand. Is there anything to do for mouth sores?

paula

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

Celiac.com Sponsor (A8-M):


2kids4me Contributor
2kids4me
Posted

aphthous ulcers is a fancy name for mouth sores or canker sores. It is very common to get mouth sores with celiac. Before we found out my daughter was celiac, she had them frequently, sometimes so many it hurt to eat and we had to only have soft food, no juice etc.

Since gluten free, not one !

sandy

if you google: aphthous ulcers and celiac many articles will come up

Electra Enthusiast
Electra
Posted
How common are mouth sores when you have celiac. My son gets them all the time, and we are still in the waiting game of seeing if he has celiac. Or does mouth sores mean it is another auto-immune disorder. I have tried to google some information and it shows lupus. Does lupus and celiac sometimes go hand in hand. Is there anything to do for mouth sores?

paula

I used to get horrible mouth sores I actually call them "craters" because they are the biggest baddest mouth sores I have ever laid eyes on. My daughter also gets them and they often think it's hand, mouth and foot disease, but she never gets any hand or foot stuff and none of the kids in day care catch it, so we know it's Celiac. The ones we get are way beyond the normal canker sores, they are huge and form massive holes in your mouth before they are done EEK!! They are horribly, horribly, horribly painful. I wouldn't even wish them on my worst enemy!!

evie Rookie
evie
Posted
I used to get horrible mouth sores I actually call them "craters" because they are the biggest baddest mouth sores I have ever laid eyes on. My daughter also gets them and they often think it's hand, mouth and foot disease, but she never gets any hand or foot stuff and none of the kids in day care catch it, so we know it's Celiac. The ones we get are way beyond the normal canker sores, they are huge and form massive holes in your mouth before they are done EEK!! They are horribly, horribly, horribly painful. I wouldn't even wish them on my worst enemy!!

I used to get those bad sores on my inside cheeks + tongue, would be hard to eat. After getting to the right Dr (dermatologist) I was put on a med for Citicidal Pemphoid. It is realted to DH and Celiac, did no know that @ the time so ws on the ned for 7 years. After celiac diagnosis and lots of time I got off it and only use a special mouth rinse when I have small flare ups. I know how painful it can be so if you and daughter are gluten free you have a good chance of improvement after several months. Best wishes for you!! :blink: evie

Electra Enthusiast
Electra
Posted
I used to get those bad sores on my inside cheeks + tongue, would be hard to eat. After getting to the right Dr (dermatologist) I was put on a med for Citicidal Pemphoid. It is realted to DH and Celiac, did no know that @ the time so ws on the ned for 7 years. After celiac diagnosis and lots of time I got off it and only use a special mouth rinse when I have small flare ups. I know how painful it can be so if you and daughter are gluten free you have a good chance of improvement after several months. Best wishes for you!! :blink: evie

Thanks Evie,

I've actually been gluten free for about a month, but my daughter has to continue eating Gluten until her Endoscopy at the end of the month. I haven't had mouth sores since going gluten free (except for one tiny one when I was accidentally glutened)!! Hopefully I won't EVER get them that bad again!!

Kaycee Collaborator
Kaycee
Posted

I would get mouth ulcers, not a lot but a few. I remember one very big extremely painful sore, Ouch.

But since being gluten free they have all but disappeared. So I think there is a connection there. My teenage son gets them, has been tested for coeliac but results came back negative, he also has reflux, so there is a worry that he has it.

Cathy

Guest pdwillis
Guest pdwillis
Posted
I would get mouth ulcers, not a lot but a few. I remember one very big extremely painful sore, Ouch.

But since being gluten free they have all but disappeared. So I think there is a connection there. My teenage son gets them, has been tested for coeliac but results came back negative, he also has reflux, so there is a worry that he has it.

Cathy

He has a really bad one on his face by his lips, the doctor just called and once us to take him in for a strep test, but i really dotn think it is strep. He gets them all the time in the last year. We are also going iin to have the whole celiac test done, He had it done a couple of weeks ago but he only did the Iga and Igg test, which the Igg test was high.

paula

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

Celiac.com Sponsor (A8-M):


Felidae Enthusiast
Felidae
Posted

I had them all the time prior to going off gluten. I didn't know why I got them back then. I haven't had one since being gluten-free.

Corkdarrr Enthusiast
Corkdarrr
Posted

Try taking some L-Lysine. You can find it at any drug store. I just take a whole bunch of it all day long until they start to fade away.

Courtney

Electra Enthusiast
Electra
Posted
He has a really bad one on his face by his lips, the doctor just called and once us to take him in for a strep test, but i really dotn think it is strep. He gets them all the time in the last year. We are also going iin to have the whole celiac test done, He had it done a couple of weeks ago but he only did the Iga and Igg test, which the Igg test was high.

paula

Wow we've never gotten them on the face. We always get them inside the mouth, lips or in the back of the throat. They like to swell up the lines in the sides of our cheaks too so it feels like you have an entire vein running down the inside of your cheek that's infected OUCH they kill!!

rez Apprentice
rez
Posted
He has a really bad one on his face by his lips, the doctor just called and once us to take him in for a strep test, but i really dotn think it is strep. He gets them all the time in the last year. We are also going iin to have the whole celiac test done, He had it done a couple of weeks ago but he only did the Iga and Igg test, which the Igg test was high.

paula

There is a difference between apthous ulcers/canker sores and cold sores. I noticed that you said your son's sore is on his face. It sounds like a cold sore/fever blister. Those are more viral and can also be caused by the herpes virus, any virus, or stress. Apthous ulcers that go along w/ Celiac are on the inside of the mouth; Gum line, inside of lips or cheek. My son used to get TONS of them. He still got them after going gluten free. Dairy was triggering them too. They are white on the inside with a red line/ring around the outer edge. It he tried to eat dairy after going gluten free/they would appear within a day or two. Once he had 8 at a time. Nasty and super painful! Our doctor said it wasn't the lactose intolerance itself causing the sores, but the Celiac proper. Good luck.

rez Apprentice
rez
Posted
He has a really bad one on his face by his lips, the doctor just called and once us to take him in for a strep test, but i really dotn think it is strep. He gets them all the time in the last year. We are also going iin to have the whole celiac test done, He had it done a couple of weeks ago but he only did the Iga and Igg test, which the Igg test was high.

paula

There is a difference between apthous ulcers/canker sores and cold sores. I noticed that you said your son's sore is on his face. It sounds like a cold sore/fever blister. Those are more viral and can also be caused by the herpes virus, any virus, or stress. Apthous ulcers that go along w/ Celiac are on the inside of the mouth; Gum line, inside of lips or cheek. My son used to get TONS of them. He still got them after going gluten free. Dairy was triggering them too. They are white on the inside with a red line/ring around the outer edge. It he tried to eat dairy after going gluten free/they would appear within a day or two. Once he had 8 at a time. Nasty and super painful! Our doctor said it wasn't the lactose intolerance itself causing the sores, but the Celiac proper. Good luck.

rez Apprentice
rez
Posted

PS. There is a medicine that can help treat them that your doc can prescribe. A dental paste and some other thing.

blueeyedmanda Community Regular
blueeyedmanda
Posted

I used to get them all the time, and it was before I knew I had celiac. For the longest time, I blamed them on my wisdom teeth which were coming in crookedly, so I kept thinking the teeth were irratating the gums....turns out once I started the diet the sores went away....and I didn't get my wisdom teeth out for almost a year afterwards.

CMCM Rising Star
CMCM
Posted

There is a very STRONG correlation with lupus and celiac disease, although this fact is apparently not well known. In the book Dangerous Grains, I think it was, I read about a doctor in Australia who was handed a group of 75 hopeless lupus patients....their own doctor had given up helping them. This 2nd doctor put them all on a gluten free diet, and for every single one of them, the lupus went away, and even 5 years later it was still gone. He couldn't get the results of this one experience published, unfortunately, so this knowledge stays realtively unknown. Too bad.... :(

Yenni Enthusiast
Yenni
Posted

I have had canker sores really bad from time to time. I can get several at a time and some times I got really big ones. I remember one summer (just after I had Mononukleosis) I had one big one almost a whole summer.

Now towards the end, well probably the last year, I had them as soon as I used sulphate containing tooth past. I stopped with gluten and made sure I got a gluten free tooth past and it hasn't been bad at all.

I read about Lupus being connected to Celiac in the Dangerous Grains book also.

itsmaryj Newbie
itsmaryj
Posted
aphthous ulcers is a fancy name for mouth sores or canker sores. It is very common to get mouth sores with celiac. Before we found out my daughter was celiac, she had them frequently, sometimes so many it hurt to eat and we had to only have soft food, no juice etc.

Since gluten free, not one !

sandy

if you google: aphthous ulcers and celiac many articles will come up

My mother thought the cure for my canker sores was to put Alum on them. How horrible! I've had them often since I was quite young.

Mary

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,913
    • Most Online (within 30 mins)
      7,748
    patanddiane
    Newest Member
    patanddiane
    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

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.