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EvelynE

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Hi there,

I am new here to the forum. I was diagnosed with gluten intolerance this past summer after years of trying to pin down

A thyroid problem, burning mouth and a foggy head among other things. I think i am making progress toward wellness, feeling much better but still have hyperthyroidism and elevated liver enzymes. I have a naturopath and D.O. on my "team". Had I followed the endocrinologist protocol of thyroid meds without question, it may have been much longer to discover the gluten issue.

Looking forward to learning from you guys!

Has anyone else had burning mouth syndrome? Doctors told me for four years that there was no known cause for that. It is maddening but thankfully eased considerably when i went off gluten. Comes back if some gluten sneaks in.

Thanks!!

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Welcome EvelynE!

I'm glad to know you were able to find out about your gluten intolerance and begin to feel better.

I personally have not had the burning mouth but I'm sure you will find others here that have.

Stick around and feel free to ask a lot of questions.


Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.

2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.

Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.

So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!

My adult daughter also has been helped by eating gluten-free.

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Welcome EvelynE! I asked my daughter (Hashi's, hypo, PCOS, gluten intolerant) your question and she replied that she does get small blister like sores if she eats gluteny items or she gets canker sores.

Does it happen immediately after eating something with gluten, or is this something that is chronic?


"Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them -- every day begin the task anew."

Saint Francis de Sales

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Hi there,

I am new here to the forum. I was diagnosed with gluten intolerance this past summer after years of trying to pin down

A thyroid problem, burning mouth and a foggy head among other things. I think i am making progress toward wellness, feeling much better but still have hyperthyroidism and elevated liver enzymes. I have a naturopath and D.O. on my "team". Had I followed the endocrinologist protocol of thyroid meds without question, it may have been much longer to discover the gluten issue.

Looking forward to learning from you guys!

Has anyone else had burning mouth syndrome? Doctors told me for four years that there was no known cause for that. It is maddening but thankfully eased considerably when i went off gluten. Comes back if some gluten sneaks in.

Thanks!!

Hi Evelyn!

I have a terrible burning mouth, tongue, throat. No one can explain it..it is NOT yeast or anything.Not my thyroid either. And an endocrinologist insisted I take meds, but they only made me HYPER and racy. Another doc said You do not need those...get off those!! I feel better now.

I read that burning mouth can be a celiac symptom and I am PRAYING it goes away. I have had it for 2 1/2 years. I hate it. I am gluten-free 2 months. Sometimes, it seems less intense, then roars to life. Don't know why--I am 100% gluten-free. A few people on here have told me it went away for them...maybe for us, too!

Best wishes!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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I read that burning mouth can be a celiac symptom and I am PRAYING it goes away. I have had it for 2 1/2 years. I hate it. I am gluten-free 2 months. Sometimes, it seems less intense, then roars to life. Don't know why--I am 100% gluten-free. A few people on here have told me it went away for them...maybe for us, too!

Best wishes!

....is there any connection between this and OAS, possibly? Oral Allergy Syndrome is when you ingest something that's not an allergen, but is close enough to it in structure that your body reacts. Strong burning/stinging pain in the lips, tongue, cheeks, sometimes down the throat. However, that fades.

But I was just wondering if there might be something similar that could happen with, say, environmental allergies. If it was something like a mold, or something else, in the air that you are inhaling constantly, wonder if that might give a sort of weird constant OAS type of reaction.

Yes, I'm just totally speculating on something I know nothing about, but it sounds like the docs are stumped too, so can't hurt, eh?

Maybe you could keep a little journal of what products you might be using, or what your environment is (outdoors, work, lots of perfume, etc...) and see if there is any correlation between the pain and that, perhaps? Or think back and see if anything changed in your environment a couple years back when this started, like a new house, a new job, a new detergent.

Just honestly pulling random ideas out of the air, which might be totally useless to you, but just...well, heck. Can't hurt to check it out, yeah?

EDIT: okay, I just did a bit of research, and I did come across this:

"One cause of burning mouth pain, which may be often misdiagnosed as burning mouth syndrome, is a contact sensitivity Type IV hypersensitivity in the oral tissues to common substances such as sodium lauryl sulfate, a surfactant commonly used in household products, cinnamon aldehyde or dental materials. There are now several toothpastes on the market specifically without sodium lauryl sulfate or other preservatives which have been found to be associated with sensitivities" (wikipedia)

So it sounds like an allergic reaction/sensitivity might be a possibility, just not necessarily the most likely one.

So sorry you have to go through this. Sounds like a complete bear. :(


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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....is there any connection between this and OAS, possibly? Oral Allergy Syndrome is when you ingest something that's not an allergen, but is close enough to it in structure that your body reacts. Strong burning/stinging pain in the lips, tongue, cheeks, sometimes down the throat. However, that fades.

But I was just wondering if there might be something similar that could happen with, say, environmental allergies. If it was something like a mold, or something else, in the air that you are inhaling constantly, wonder if that might give a sort of weird constant OAS type of reaction.

Yes, I'm just totally speculating on something I know nothing about, but it sounds like the docs are stumped too, so can't hurt, eh?

Maybe you could keep a little journal of what products you might be using, or what your environment is (outdoors, work, lots of perfume, etc...) and see if there is any correlation between the pain and that, perhaps? Or think back and see if anything changed in your environment a couple years back when this started, like a new house, a new job, a new detergent.

Just honestly pulling random ideas out of the air, which might be totally useless to you, but just...well, heck. Can't hurt to check it out, yeah?

EDIT: okay, I just did a bit of research, and I did come across this:

"One cause of burning mouth pain, which may be often misdiagnosed as burning mouth syndrome, is a contact sensitivity Type IV hypersensitivity in the oral tissues to common substances such as sodium lauryl sulfate, a surfactant commonly used in household products, cinnamon aldehyde or dental materials. There are now several toothpastes on the market specifically without sodium lauryl sulfate or other preservatives which have been found to be associated with sensitivities" (wikipedia)

So it sounds like an allergic reaction/sensitivity might be a possibility, just not necessarily the most likely one.

So sorry you have to go through this. Sounds like a complete bear. :(

I appreciate your thoughts! :)

It is just another one of the ridiculous, painful symptoms that erupted with the disease.

Burning mouth, red tongue is listed as a celiac symptom.

I have researched BMS, too--and tried to eliminate all the possible causes of it.

The GI 's NP said it s "just GERD"..baloney! I have no reflux any more.

The allergist felt it was NOT a food or environmental allergy. (ha!) he had me tested for everything under the sun.

It is NOT yeast (I was tested)

It is NOT mold (house tested)

Nothing new in my house. I no longer work.

It came on in July 2009 and has not left.

I changed toothpastes. No SLS.

It is CONSTANT..not one food in particular, although it does get worse with salt, spices, tomato sauce mint or citrus. Even club soda hurts going down.

I told this to 7 doctors.

They all shrugged their shoulders at me.

I think the best guess is it is HORMONAL (menopause is often cited as a cause) and will resolve as my system balances out. Hormones, like everything else, are whacked when the gut is compromised.

I remain hopeful it will resolve.

If anyone else has other ideas, besides the ones I have explored, please let me know. I'll try anything!!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Hi, am also new here.. I wanted to say that I was recently diagnosed with Celiac Disease and Burning Mouth Syndrome,(I've had the BMS for years) but because the diagnosis is new (Celiac) I'm still testing things out. I will say this though, the burning in mouth has been constant since my stomach biopsy,(it was every three days or so before procedure) until two days ago when I started the Gluten Free Diet..Today is my 3rd day of Gluten free..Each day the pain is lessening, that I'm not ingesting Gluten. I am so excited to share this with people who have Burning Mouth.. I will keep you all updated on my progress. :)

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