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Hello !

I am a 30 years old guy, 5 years ago i took an antidepressant called DEROXAT, the side effect of those pills made my lips very dry, i put lip balm to feel better... the day later i've started to see white spots on my lips, i heard they are called FORDYCE SPOTS, i am not sure if it's because of the pills or because of the lip balm, but most people who have fordyce spots seem to have very dry lips...

i put jojoba often to moisturize, 5 years later my lip are less dry (but not as good as before) and the fordyce are still here, they seem to slowly spread on my upper lips...

i heard that people with celiac disease have often lips problems like exfoliative cheilitis... i am not sure if i have a problem with gluten but i can say that i fart often and my belly is often round, it's not fat it's like there are lots of air inside... and my belly make sounds too, like it's alive, the doctor once told me yeah it's normal that your belly makes sounds, it means you are not dead but well, i feel it's too much and i have never heard anyone with sounds like mine, it's really loud.

i have tried to eat less gluten, but never had the courage to stop it,i am wondering if my lip problem could be fixed by stopping gluten...

i have a plan to stop it and to buy a juicer to eat more vegetable and fruits, trying to avoid the bad foods as much as possible, i really need to see my lips back...

if someone can tell me anything about lips problem that got fixed, it would make me a lot happy, i feel no one know how to get rid of fordyce spots...

thank you for your reply !!

 

 

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Hi Legu,

I don't know anything about fordyce spots.  I do know about celiac disease testing though.  If you plan on finding out if you have celiac disease, you should not stop eating gluten yet.  It is a bad idea to stop or cut down on gluten before the testing is done,  Usually the testing is a simple blood test for immune system antibodies to gliaden (a wheat gluten protein) first, and then later an endoscopy to check for damage to the small intestine lining.

There are many (hundreds) of possible symptoms associated  with celiac disease and they range throughout the body.  Celiac can cause so many symptoms because it affects digestion and the immune system and those affect the entire body.

The only treatment for celiac disease is a life time gluten-free diet.  It's not something to guess at if you have the opportunity to be tested.  Some of your symptoms could definitely be caused by celiac disease.  There are some people who have no GI symptoms but still have celiac disease (silent celiac).  There are people who have trouble walking (gluten ataxia)  which is caused by celiac disease.  Mental symptoms can happen also as our brains are affected by nutrition just like the rest of our bodies.

Welcome to the forum Legu! :)

Edited by GFinDC

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do you have exfoliative cheilitis aswell? or just fordyce spots

i've had fordyce spots and exfoliative cheilitis since 2008. went to many doctors and dermatologists took me over a year to even find out what i had as no doctor was familiar with exfoliative cheilitis or had ever seen a case. the dermatologist sent photos to all his dermatologist friends asking if they knew what it was with no success. my mum spent months reading through information on every possible lip condition until she finally found what i had. i went back to him afterwards, all he could offer me was blood test for HIV as it is something a symptom.

the fordyce spots are very tiny and unnoticeable they have remained even through the times when my exfoliative cheilitis has been mild and not flaring up. i actually didn't notice them until my dentist pointed it out to me. they arn't a problem and are not horribly uncomfortable and painful the way exfoliative cheilitis is, as far as i know there is still no successful treatment /cure or known cause but i do use hydrocortisone cream which helps with the pain and redness for a few hours.

i was hoping it would start to clear up now that i have been gluten free for almost 4 months but its actually the second worse its ever been in 8 years. there are alot of things which tend to trigger it to flare up such as air conditioning, wind, heating, water, hot foods, anything touching my lips, makeup/shampoo/conditioner, any lip balms /gloss other than a natural cocoa butter one i have found. it also gets worse the more frequently i use lip balms /hydrocortisone cream. the more i do the worse it gets so i've learnt its better to minnimize touching my lips and only use lip balm when i really need it.

since testing positive for celiac been trying to find evidence or research of a connection between the two but haven't found much other than posts on forums. although i think i did read about angular cheilitis as a symptom of malabsorbion and vitamin deficiencies.

one of my doctors wrote on my GI referral that he "clued on to celiac disease because of my 8 year history of cheilitis"

which annoyed me so much since he seemed to be taking credit for figuring something out that he didn't. he still doesn't understand what exfoliative cheilitis is, constantly referring to it as mouth ulcers, angular cheilitis or just cheilitis which are all completely different and none involve constant peeling skin.not to mention he never diagnosed me with celiac another doctor did and over the past 8 years i went to him and other doctors about exfoliative cheilitis no one ever said it could be caused by celiac disease or gluten.

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15 hours ago, GFinDC said:

Hi Legu,

I don't know anything about fordyce spots.  I do know about celiac disease testing though.  If you plan on finding out if you have celiac disease, you should not stop eating gluten yet.  It is a bad idea to stop or cut down on gluten before the testing is done,  Usually the testing is a simple blood test for immune system antibodies to gliaden (a wheat gluten protein) first, and then later an endoscopy to check for damage to the small intestine lining.

There are many (hundreds) of possible symptoms associated  with celiac disease and they range throughout the body.  Celiac can cause so many symptoms because it affects digestion and the immune system and those affect the entire body.

The only treatment for celiac disease is a life time gluten-free diet.  It's not something to guess at if you have the opportunity to be tested.  Some of your symptoms could definitely be caused by celiac disease.  There are some people who have no GI symptoms but still have celiac disease (silent celiac).  There are people who have trouble walking (gluten ataxia)  which is caused by celiac disease.  Mental symptoms can happen also as our brains are affected by nutrition just like the rest of our bodies.

Welcome to the forum Legu! :)

Hello !

i am french and the blood test is very expensive here, but if i stop gluten and i see it's turning better for me (for my lips or my belly) it's would means that my body doesn't like gluten, it would be enough for me to stop it, anyway i don't think eating gluten is natural and most people have problem because of it even if they don't have celiac disease ! i don't know what you think about this but it's my though...

thank you this forum looks great !

3 hours ago, emma6 said:

do you have exfoliative cheilitis aswell? or just fordyce spots

i've had fordyce spots and exfoliative cheilitis since 2008. went to many doctors and dermatologists took me over a year to even find out what i had as no doctor was familiar with exfoliative cheilitis or had ever seen a case. the dermatologist sent photos to all his dermatologist friends asking if they knew what it was with no success. my mum spent months reading through information on every possible lip condition until she finally found what i had. i went back to him afterwards, all he could offer me was blood test for HIV as it is something a symptom.

the fordyce spots are very tiny and unnoticeable they have remained even through the times when my exfoliative cheilitis has been mild and not flaring up. i actually didn't notice them until my dentist pointed it out to me. they arn't a problem and are not horribly uncomfortable and painful the way exfoliative cheilitis is, as far as i know there is still no successful treatment /cure or known cause but i do use hydrocortisone cream which helps with the pain and redness for a few hours.

i was hoping it would start to clear up now that i have been gluten free for almost 4 months but its actually the second worse its ever been in 8 years. there are alot of things which tend to trigger it to flare up such as air conditioning, wind, heating, water, hot foods, anything touching my lips, makeup/shampoo/conditioner, any lip balms /gloss other than a natural cocoa butter one i have found. it also gets worse the more frequently i use lip balms /hydrocortisone cream. the more i do the worse it gets so i've learnt its better to minnimize touching my lips and only use lip balm when i really need it.

since testing positive for celiac been trying to find evidence or research of a connection between the two but haven't found much other than posts on forums. although i think i did read about angular cheilitis as a symptom of malabsorbion and vitamin deficiencies.

one of my doctors wrote on my GI referral that he "clued on to celiac disease because of my 8 year history of cheilitis"

which annoyed me so much since he seemed to be taking credit for figuring something out that he didn't. he still doesn't understand what exfoliative cheilitis is, constantly referring to it as mouth ulcers, angular cheilitis or just cheilitis which are all completely different and none involve constant peeling skin.not to mention he never diagnosed me with celiac another doctor did and over the past 8 years i went to him and other doctors about exfoliative cheilitis no one ever said it could be caused by celiac disease or gluten.

i have only fordyce spots, and it's a big problem for me, i can't live with this and i want my lip to be back like before... but lots of people who have exfoliative cheilitis have also fordyce spots, it must be linked somehow...

in my case i have a DNA disease called hypolipobetalipoprotéinemie (not sure if this weird name is the same in english though) but my liver doesn't make cholesterol, i have very low fat in my blood and i have to take care to don't eat too much fat food because the fat can get around my liver, it could be dangerous. because of this disease i have a problem to absorb lipidic vitamins (not sure of the word in english too sorry) but it's the vitamins that need fat to get absorbed (A,D,E,K) the vitamins D i take already supplements for 2 years, the vitamins A and K are fine too, but i've seen two months ago that i have very low vitamin E. i'm taking supplement for it too now...

but still nothing get better for my lip, i've tried a laser called "smoothbeam laser" it works fine for acne, i tried just at the corner of my lip and i've got a scar and the fordyce came back anyway.

When you say that the more you do for your lips and the worse it get, i am sure it's real and if you want my advice, you have to search the solution from inside your body, not from outside. i mean do not search something miracle that you will put on your lip and makes it better. it's all fake, you have to search what can cause this, maybe it's gluten, maybe you are low vitamin D or B2, or vitamins E,  and an important thing is the more you think about it, the worse it's gonna get ! 

i can't explain why, but i know it ! Our brain affect our body more than we think.

for long time in my life i have eaten lots of bad food, when i was 15 years old i was drinking cola everytime, i didn't know what water was... i was not fat because i've started to play gym so early, at 12... i've eaten lots of bad foods, cola and lots of protein supplements... i drank lots of milk, at least a liter per day which is not natural too... but my body was ok and my lips were okay...

like i told you i've started to get problems once i took those antidepressant pills, it made ma lips dry, and every people with fordyce have dry lips... and i think that people with fordyce are stressful person too but maybe i'm wrong.

are you a sensitive person ? easy to be worried ? stressful or else ?

sorry for the big message ! and i hope you understand me even i'm french ! lol

 

 

Edited by legu8

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Legu, can you change anti-depressants? It sounded like the SSRI you are taking is what originally caused the spots, though I am not sure if your liver condition factors in to it as well.

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Hello Plumbago!

i took this anti-depressant for 2 days, one of it's side effect was to make the lips very dry (i think most of anti-depressant have this side effect) so i have stopped it and i have never take any other anti-depressant since this day !

but my lip never came back as what they were before :(

by my bloodtest and a scan my liver seems to be fine, but yeah i have this DNA disease that is boring, i don't know if there is a link or not.

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15 hours ago, legu8 said:

i have only fordyce spots, and it's a big problem for me, i can't live with this and i want my lip to be back like before... but lots of people who have exfoliative cheilitis have also fordyce spots, it must be linked somehow...

in my case i have a DNA disease called hypolipobetalipoprotéinemie (not sure if this weird name is the same in english though) but my liver doesn't make cholesterol, i have very low fat in my blood and i have to take care to don't eat too much fat food because the fat can get around my liver, it could be dangerous. because of this disease i have a problem to absorb lipidic vitamins (not sure of the word in english too sorry) but it's the vitamins that need fat to get absorbed (A,D,E,K) the vitamins D i take already supplements for 2 years, the vitamins A and K are fine too, but i've seen two months ago that i have very low vitamin E. i'm taking supplement for it too now...

but still nothing get better for my lip, i've tried a laser called "smoothbeam laser" it works fine for acne, i tried just at the corner of my lip and i've got a scar and the fordyce came back anyway.

When you say that the more you do for your lips and the worse it get, i am sure it's real and if you want my advice, you have to search the solution from inside your body, not from outside. i mean do not search something miracle that you will put on your lip and makes it better. it's all fake, you have to search what can cause this, maybe it's gluten, maybe you are low vitamin D or B2, or vitamins E,  and an important thing is the more you think about it, the worse it's gonna get ! 

i can't explain why, but i know it ! Our brain affect our body more than we think.

for long time in my life i have eaten lots of bad food, when i was 15 years old i was drinking cola everytime, i didn't know what water was... i was not fat because i've started to play gym so early, at 12... i've eaten lots of bad foods, cola and lots of protein supplements... i drank lots of milk, at least a liter per day which is not natural too... but my body was ok and my lips were okay...

like i told you i've started to get problems once i took those antidepressant pills, it made ma lips dry, and every people with fordyce have dry lips... and i think that people with fordyce are stressful person too but maybe i'm wrong.

are you a sensitive person ? easy to be worried ? stressful or else ?

sorry for the big message ! and i hope you understand me even i'm french ! lol

 

 

im guessing my fordyce spots are extremely mild compared to what you have then

yes i agree with you that something is unbalanced on the inside of the body rather than the outside. i don't try to treat it anymore as i have learned to manage it over the last 8 years

like you i have tried taking vitamins for E and B2 which had no effect. i would like to get those levels checkedl all the others are in the normal range. but every doctor i have asked won't request it and says its a waste of time or too expensive

i do have extremely sensitive skin, stress doesn't seem to have a connection to it for me sometimes if it flares up it will cause me to become more stressed. but its definitely not the cause of the problem

my advice would be to be very careful with any laser treatments or creams as it could trigger it to become worse. 

let me know if you have any results from going gluten free

my celiac antibody levels are still very high so there is still a chance this could resolve after my levels have normalized.

 your english is very good i can't understand everything you wrote :)

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16 hours ago, emma6 said:

im guessing my fordyce spots are extremely mild compared to what you have then

yes i agree with you that something is unbalanced on the inside of the body rather than the outside. i don't try to treat it anymore as i have learned to manage it over the last 8 years

like you i have tried taking vitamins for E and B2 which had no effect. i would like to get those levels checkedl all the others are in the normal range. but every doctor i have asked won't request it and says its a waste of time or too expensive

i do have extremely sensitive skin, stress doesn't seem to have a connection to it for me sometimes if it flares up it will cause me to become more stressed. but its definitely not the cause of the problem

my advice would be to be very careful with any laser treatments or creams as it could trigger it to become worse. 

let me know if you have any results from going gluten free

my celiac antibody levels are still very high so there is still a chance this could resolve after my levels have normalized.

 your english is very good i can't understand everything you wrote :)

Hey Emma !

To best honest my fordyce spots are not that obvious, but i can see that it's spreading slowly on my upper lip and i really want to find a solution before it's going too crazy, i see them in the mirror, depending the light, sometimes i feel it's digusting, sometimes i feel it's not that noticeable. i don't think people notice them too much at the moment, my ex girlfriend never talked to me about them and i stayed 1 year and half with her... i don't know if she noticed them or not (maybe she did and she was too shy to ask me what are those little white dots on my lip lol).

to me there are stuff that make them worse, such as lip balm, i don't know why, but my ex girlfriend used a lot of lip balm and i got some of her lipbalm on my lips by kissing her, a day later i've got more fordyces. So i told her, no more kissing when you put lip balm, i don't like it because it's sticky ( i didn't tell her the truth lol). to moisturize my lip i use jojoba oil before to sleep, i don't put anything else.

i know a person started to get fordyce spots when someone of her family died, that's why i talked to you about "stress", emotion seem to make them spread (maybe not for everyone) maybe it's some kind of hormone like the cortisol ... i have done some research and by what i read, cortisol seem to be linked with acne (in some case, not for everyone)...

roaccutane works on acne and works also on fordyce spots (but fordyce came back when roaccutane is stopped) so i guess they are similar, maybe cortisol make fordyce spread. the woman that i talked to you about didn't have any spots before this sad event and now she can't even see her upper lip anymore she got too much fordyce.

and doctors keep saying "it's normal" lol

for the laser i agree with you... CO2 laser just burn the lip and the spots ALWAYS comeback, smoothbeam seem to be effective for acne, it works differently and i wanted to try it on my lip, i just asked to try at the corner of the lip so it won't be that bad if it gets worse or if i got a scar.

like i said, i got one little scar and fordyce came back (but not all the spots, just a few came back at the moment)

yes i'm gonna tell you for the gluten, i'm gonna buy a good juicer soon too, try to drink vegetable juice often (i'm sure it's better than cola lol)

Is your vitamin D ok ? i have read some people cured lots of skin problem just by taking high dose of vitamin D (but if you try this you need to do a blood test often because vitamin D can be dangerous when you get too much).

check on google type something like "extremely high dose vitamin D".

to be honest, i take vitamin D but never got the courage to take a lot of it, like i said it can be dangerous (at least it's what doctors say)

thank you for my english, i'm doing my best ! XD

Edited by legu8

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that is really interesting about cortisol. yes my vitamin d level is normal but am taking supplement as i'm not going outside in the sun.

i really hope yours clears up by going gluten free :) juice is definitely better than cola hopefully that will help your body as well.

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Hi Legu,

I think it's best to be diagnosed before going gluten-free.  Some people find it easier to stick to the gluten-free diet if they have a formal diagnosis.  But it's an individual decision and you have the right to go gluten-free anytime you want! :)    If you do decide to go ahead and go gluten-free without the testing, try to stick to the gluten-free diet strictly for 3 to 6 months at least.  Results from going gluten-free are not instantaneous in many cases as our bodies' immune system needs time to settle down.  After the immune attack has stopped healing can progress well.

Some people want to be fully diagnosed because celiac disease has a genetic link and they might decide to have children.  The genes don't mean you automatically will get celiac though, just that you are a potential celiac.  So those people can choose to have their children tested for celiac every few years.

I hope your lip spots go away!

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