Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

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

Lynayah

Sores In Mouth - Symptom Of Gluten-intolorance As Well As Celiac?

Recommended Posts

Hi, Everyone,

For those of you who have been following my threads (or for those I have yet to meet), I have been diagnosed highly gluten-sensitive, non-Celiac. Gene tests (DQ 2 and 8), and biopsy negative.

Something haunts me, though. For nearly 10 years, I had reoccuring sores in my mouth -- slits that would appear out of nowhere and hurt like heck. Thay are gone now, thanks to eating gluten-free.

My question: Are sores in the mouth a symptom of gluten-intolorance as well as Celiac . . . or Celiac only?


Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


For those of you who have been following my threads (or for those I have yet to meet), I have been diagnosed highly gluten-sensitive, non-Celiac. Gene tests (DQ 2 and 8), and biopsy negative.

Something haunts me, though. For nearly 10 years, I had reoccuring sores in my mouth -- slits that would appear out of nowhere and hurt like heck. Thay are gone now, thanks to eating gluten-free.

My question: Are sores in the mouth a symptom of gluten-intolorance as well as Celiac . . . or Celiac only?

Hi Lynayah,

I asked the same question several months ago....were all of the same symptoms experienced by those with celiac disease and with non-celiac gluten intolerance? The answer I got was "yes". There is no way to differentiate the two disorders based on symptoms.

It sure would be nice though, wouldn't it?!? :)

BTW, I'm one of those radicals who think that NCGI and celiac disease are the same thing; that maybe NCGI is an earlier stage or something.

There are LOTS of people here who agree, and there are LOTS of people here who disagree. :)

Take care,

JoAnn


Multiple autoimmune diseases, including celiac, Hashimoto's, psoriasis, autoimmune hepatitis, RA, SLE. Also have fibromyalgia.

Tested Fall 2008: bloodwork, biopsy negative; HLA DQ8. Doctor believes results negative due to prednisone and Imuran taken for autoimmune hepatitis.

Dx with celiac disease because of dietary response, genetics, and family history of celiac disease.

Dx with Lyme Disease Jan 2010; Lyme likely triggered some of the AI diseases.

Gluten free since 25 Nov 2008

Share this post


Link to post
Share on other sites
BTW, I'm one of those radicals who think that NCGI and celiac disease are the same thing; that maybe NCGI is an earlier stage or something.

There are LOTS of people here who agree, and there are LOTS of people here who disagree. :)

Take care,

JoAnn

I am one who agrees. With the high rate of false negatives in testing I really don't think even the doctors can say with certainty that they are not one and the same. There are also more than just DQ2 or DQ8 involved with celiac, in the US 7 more genes have been recently acknowledged and if you look into research in other countries some of them have been recognized for quite a while. My gene, DQ9 is an example. It is rarely found in the caucasian population and here is considered a gene for RA by most doctors but is considered a celiac related gene in other countries. IMHO to much emphasis is placed on trying to catagorize us as either NCGI or celiac. It is not like folks that are considered 'just' intolerant are not doing damage or have to be less strict.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Interestsing! Thank you for the replies.


Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

Share this post


Link to post
Share on other sites
Something haunts me, though. For nearly 10 years, I had reoccuring sores in my mouth -- slits that would appear out of nowhere and hurt like heck. Thay are gone now, thanks to eating gluten-free.

My question: Are sores in the mouth a symptom of gluten-intolorance as well as Celiac . . . or Celiac only?

Perfect timing on your question! I'm NCGI, and I used to get those sores a LOT throughout childhood and into adulthood. I hadn't had one in over a year, but despite being gluten-free since May I had one pop up a few days ago. Since I know I haven't been glutened I'm 99.9% sure that it's not related to gluten, but rather stress (thanks, holiday season!).

That's my 2c :)

Share this post


Link to post
Share on other sites

Hi

I had recurring mouth ulcers all my life before I went gluten free, they came and went at different times seemingly without a pattern, but dissappeared completely within 2 weeks of going gluten free. I am NCGI as well.

Interestingly, they reappeared a couple of times after being glutened, with the gluten exposure being confirmed by raised blood tests. So not only are they a part of my gluten problems, but they are the first distinct indicator of gluten exposure for me. No idea why!

Sophie

Share this post


Link to post
Share on other sites

I really don't know if I'm NCGI or Celiac since I had already gone gluten-free on my own and was unable to complete the 6 week gluten challenge needed for a colonoscopy and/or bloodwork. I made it only 12 days back on gluten and had such horrible diarrhea and felt so wretched that I refused to continue and went back to being gluten-free. As far as I'm concerned the NCGI vs. Celiac is just semantics. IMHO, NCGI is just Celiac caught "early", i.e. before the villous damage can be done. I consider myself a Celiac and when I need to explain my dietary needs, I tell friends, family, servers, etc. that I'm a Celiac. Sure saves a lot of confusion.

Like the other posters, I'd had canker sores on a semi-frequent basis since I was a child but I noticed that it got REALLY bad for the year before I went gluten-free. Not only did I have ulcers that were huge and deep but they took forever to heal. In fact, I'd barely get one healed up before the next one broke out and it wasn't unusual for me to have more than one at a time. And talk about painful!!!

I've been gluten-free since May '09 and I've had just one very small ulcer since then...and it was after getting inadvertently glutened. Come to think of it, my gums used to bleed horribly after brushing my teeth but they haven't been doing that since going gluten-free!

Share this post


Link to post
Share on other sites

As the years wore on I got canker sores twice a year, at the season changes, along with the flu or a cold.

Since going gluten-free, not a single one or a hint of one.

Share this post


Link to post
Share on other sites

I, too, have had great luck with the sores going away! The only time one will pop up is when I accidentally gluten myself.


Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

Share this post


Link to post
Share on other sites

This is something I need to share with my mother. Just today she was complaining about the sores in her mouth. I keep trying to get her to get tested because she has so many symptoms.

How long after going gluten-free did it take for your sores to start healing? I'd like to have something to tell her that she could look forward to as far as a time-frame. I keep telling her how important it is to find out for certain if she has this and how important it is for her to go gluten-free but she doesn't get it. I keep telling her how much better I'm feeling now. I don't know how to get through to her.

Share this post


Link to post
Share on other sites
This is something I need to share with my mother. Just today she was complaining about the sores in her mouth. I keep trying to get her to get tested because she has so many symptoms.

How long after going gluten-free did it take for your sores to start healing? I'd like to have something to tell her that she could look forward to as far as a time-frame. I keep telling her how important it is to find out for certain if she has this and how important it is for her to go gluten-free but she doesn't get it. I keep telling her how much better I'm feeling now. I don't know how to get through to her.

My mouth ulcers took 1-2 weeks maximum to heal after going gluten free. When I was accidentally glutened I had a flair-up of multiple ulcers coming up at once, but they healed pretty quickly (before going gluten-free they would take weeks to heal even with treatment).

It may take longer for others depending on their general health, but it was quick for me.

Good luck for your mum :)

Share this post


Link to post
Share on other sites
This is something I need to share with my mother. Just today she was complaining about the sores in her mouth. I keep trying to get her to get tested because she has so many symptoms.

How long after going gluten-free did it take for your sores to start healing? I'd like to have something to tell her that she could look forward to as far as a time-frame. I keep telling her how important it is to find out for certain if she has this and how important it is for her to go gluten-free but she doesn't get it. I keep telling her how much better I'm feeling now. I don't know how to get through to her.

For me, they went away the minute I went gluten free. Merry Christmas!

Hugs,

Lyn


Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

Share this post


Link to post
Share on other sites
My mouth ulcers took 1-2 weeks maximum to heal after going gluten free. When I was accidentally glutened I had a flair-up of multiple ulcers coming up at once, but they healed pretty quickly (before going gluten-free they would take weeks to heal even with treatment).

It may take longer for others depending on their general health, but it was quick for me.

Good luck for your mum :)

Thank you!

Share this post


Link to post
Share on other sites
For me, they went away the minute I went gluten free. Merry Christmas!

Hugs,

Lyn

Thanks Lyn! Merry Christmas to you!!!

Share this post


Link to post
Share on other sites