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Anyone With Celiac Also Have Oral Lichen Planus?
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Hi there all :)

I'm a newbie and I think it is wonderful that websites like this exist helping people understand and share experiences which otherwise might be a very lonely time not to mention, frightening and uncertain.

I was wondering if anybody here also suffers from oral lichen planus?

I was diagnosed in 2007 with oral lichen planus and then that November I had an overwhelmingly postive blood test for celiac disease. I had a biopsy taken early January 08 but the biopsy showed only minor atrophy of the villi. My specialist could not recommend me to go gluten free due to the biopsy but I know the blood test itself is substantial enough on its own.

I did go gluten free for three months at that stage but because I didn't really notice any of the more familiar symptons I thought perhaps, maybe, more like hoping that perhaps the blood test was simply a red herring and it could have possibly been mistaken for something else. I decided though to go gluten free mid March this year because I had diahorrea only in the mornings mainly since Xmas time.

However I got a bad chest infection just after going gluten free and with it, I experienced a very bad episode of reflux and heartburn which previously I never had. I am also continuing to lose unnecessary weight. (I wish I had more meat on my bones to say yeah but unfortunately I don't lol) On top of all this, I had a chest x-ray on Saturday just to check that I didn't have pneumonia and it was noted that I have over inflated lungs due to asthma possibly although I've never used an inhaler to date.

What I really wanted to know if anyone else out there suffers from this horrible condition oral lichen planus and how does this sit alongside their gluten sensitivity issue. I really find the lichen planus plays absolute havoc with my body, with all the inflammation and I would be interested to know if anyone else has similar experiences.

Thanks everyone for taking the time to read this and I hope to make some wonderful celiac friends.

kind regards

Whiterabbit

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Here is a copy of a post dated 4-15-2008 from another Lichen Planus thread (Actually a lichen Sclerosis post).

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This is so wierd. I had a strange skin condition about 20 years ago. It was only one small, smooth circle about the diameter of a cigarette. It didn't itch or cause me any physical problem. But, it was on a certain private part of my anatomy that immediately resulted in me totally freaking out. I was certain that God had inflicted me with a rebuke of my careless (albeit limited) behavoir.

My personal doctor had no idea what it was, and so referred me to a dermatologist who identified it in short order. Lichen Planus. It is not contagious (so I didn't "catch" it from anyone), and it's origin is not known. It is thought to be related to your disorder, but is a separate and less severe malady. It is said to be aggravated by eating toast, and crunchy foods such as cereals and chips, etc. DUH, I was the toast and all things crunchy fiend. Crusty bread chief amongst my many bread obsessions. They give you a topical cortasteroildal cream which makes it go away. But, here's the kicker, it's an autoimmune disorder. Granted, there are many autoimmune disorders. But still, given that I now have bonafide Celiac Disease, maybe there was an early connection.

This is the first I've ever heard either of these skin conditions mentioned here. Thanks for your post.

best regards, lm

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I didn't mention it in that post, but at the same time, I also had some oral symptoms. That's how the dermotologist diagnosed it. There were white lines on the inside of my cheeks. No pain or discomfort of any kind, and they went away after a while, never to return (as far as I know).

best regards, lm

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Hi im :-)

That's really interesting to hear that your white patches just disappeared never to return - great news :-). With my lichen planus I also have the white spidery marks on the cheeks which don't give me much trouble but it is the mouth ulcers (canker sores) along the tongue and the burning/inflammation of the tongue that really plays havoc with my health.

I feel like this dog lol I know when I'm feeling unwell because my tongue gets really hot and I usually put it between my teeth and I can feel the heat hence my unwellness factor climbs up several notches. I am thinking though that my hormones also have a big role to play in this as usually my best week in my month is the week just before my cycle kicks in - if only I could 'always' feel that way I'd feel like superwoman compared to how I feel right now.

Thanks for replying :-)

cheers

whiterabbit

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I just got diagnosed with lichen planus about five days ago and was looking for information about that together with celiacs and came across your post.

I've seen a lot recently about people with celiacs having oral ulcers, though the dentist I saw said she didn't believe the two were related (I'm not convinced). It doesn't seem like gluten is playing a role in my outbreaks though because I am super careful with my diet and mostly eat only food I've prepared myself.

The lichen planus is miserable though. I was to the point of not being able to eat at all. Prednisone is clearing it up, but now I'm dealing with the side effects from that...

quote name='whiterabbit' timestamp='1241168132' post='529801']

Hi there all :)

I'm a newbie and I think it is wonderful that websites like this exist helping people understand and share experiences which otherwise might be a very lonely time not to mention, frightening and uncertain.

I was wondering if anybody here also suffers from oral lichen planus?

I was diagnosed in 2007 with oral lichen planus and then that November I had an overwhelmingly postive blood test for celiac disease. I had a biopsy taken early January 08 but the biopsy showed only minor atrophy of the villi. My specialist could not recommend me to go gluten free due to the biopsy but I know the blood test itself is substantial enough on its own.

I did go gluten free for three months at that stage but because I didn't really notice any of the more familiar symptons I thought perhaps, maybe, more like hoping that perhaps the blood test was simply a red herring and it could have possibly been mistaken for something else. I decided though to go gluten free mid March this year because I had diahorrea only in the mornings mainly since Xmas time.

However I got a bad chest infection just after going gluten free and with it, I experienced a very bad episode of reflux and heartburn which previously I never had. I am also continuing to lose unnecessary weight. (I wish I had more meat on my bones to say yeah but unfortunately I don't lol) On top of all this, I had a chest x-ray on Saturday just to check that I didn't have pneumonia and it was noted that I have over inflated lungs due to asthma possibly although I've never used an inhaler to date.

What I really wanted to know if anyone else out there suffers from this horrible condition oral lichen planus and how does this sit alongside their gluten sensitivity issue. I really find the lichen planus plays absolute havoc with my body, with all the inflammation and I would be interested to know if anyone else has similar experiences.

Thanks everyone for taking the time to read this and I hope to make some wonderful celiac friends.

kind regards

Whiterabbit

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    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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