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

Ororal lichen planus due to auto immune issues like celiac


Ann Lewis

Recommended Posts

Ann Lewis Newbie

Someone wrote about canker sores.  I've had celiac for 25 years, and as I got older I get oral lichen planus when I am under stress or haven't been resting enough.  I try natural remedies but when it's bad (sores inside cheeks) I need to use Dermovate Cream, which isn't for oral use, but Mouth specialist told me it's the only thing that makes it go away.  I would love to know a natural remedy to help.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
7 hours ago, Ann Lewis said:

Someone wrote about canker sores.  I've had celiac for 25 years, and as I got older I get oral lichen planus when I am under stress or haven't been resting enough.  I try natural remedies but when it's bad (sores inside cheeks) I need to use Dermovate Cream, which isn't for oral use, but Mouth specialist told me it's the only thing that makes it go away.  I would love to know a natural remedy to help.

Welcome to the forum.  

When were the last time your celiac antibodies were tested?  It might help to rule out active celiac disease as the culprit for your lichen Planus.  It can help determine if you are being exposed to hidden sources of gluten.  

Open Original Shared Link

Sorry, I do not have a solution to your Lichen Planus, but maybe another member will!  

cristiana Veteran

I'm not sure if this will help but I've had quite a few issues with my mouth over the years with a sore areas and canker sores, burning and tingling.  The specialist that saw me about one particular lump this year told me I was vulnerable because my iron was low, and wrote in a follow-up letter to my gastroenterologist that I should aim to have ferritin levels at 40 (mine was nine at the time) and then things should improve.

I have had a bad year with my mouth and have just discovered that my celiac antibodies are way up.  So a combination of low iron and raised celiac antibodies may have been to blame.  Great tip from Cyclinglady about being tested.  My tip is get your iron tested, too.

Feeneyja Collaborator

I get horrible sores in my mouth when I get glutened. It’s usually a day or two post glutening (after the nausea has past).  On the roof of my mouth, my tongue, my gums. During my gluten challenge they got so bad that my teeth started to get loose. I have no clue what kind of sores they are. But gluten is definitely the trigger. 

I have met folks with oral lichen planus that found relief on the Autoimmune Protocol diet (AIP).  It is restrictive, but it helps you identify food intolerances/triggers to help with healing.  Something to think about. 

Posterboy Mentor
On 12/19/2017 at 1:58 AM, Ann Lewis said:

Someone wrote about canker sores.  I've had celiac for 25 years, and as I got older I get oral lichen planus when I am under stress or haven't been resting enough.  I try natural remedies but when it's bad (sores inside cheeks) I need to use Dermovate Cream, which isn't for oral use, but Mouth specialist told me it's the only thing that makes it go away.  I would love to know a natural remedy to help.

Ann Lewis,

I don't know if you would call it a natural remedy or not but swilling with "salt water" can help your sores heal quicker.

I sware by the Amino Acid Lysine.  It usually got rid of my mouth sores in a two or three days. .   up to a week if needed.

1000mg Lsyine with each meal for two or three days can help get rid of them.

It can be taken at 500mg maintenance as well to keep them at bay.

Iron Deficiency Anemia does seem to be linked to mouth sores to follow up on others observation.

Here is a livestrong article about the connection between IDA and mouth sores.

Open Original Shared Link

I would also recommend this thread to study more about IDA.

you may want to have your doctor perform a gastric acid function test to check your stomach acid levels.

when your stomach acid gets extremely low you can struggle with IDA.  You would remember if you had this test.  It would of involved swallowing a Pill with a string on it for easy retrieval.

here is research on the role stomach acid plays in Iron absorption.

Open Original Shared Link

Here is my blog post that talks about my experience with low stomach acid.

we often don't test these things .  . . we just assume we have high stomach acid.

we can't know for sure unless the doctor test's us. . .

but i found timeline helped me to understand treating my low stomach acid with powdered stomach acid by taking betaineHCL helped me.

quoting from the above post to explain what I mean about timeline.

"How can we know if it truly high or low? You’ve heard the phrase timing is everything well it is here too!

Timeline is important in any diagnosis.

IF your stomach acid was HIGH as you often hear (everywhere) you hear take a Proton Pump Inhibitor aka acid reducer’s for heartburn/GERD

(medical name for heartburn) then eating food (carbs, greasy things) wouldn’t bother you.

The acid would cut it up but if it is already low/weak then even a little acid can burn your esophagus which is not coated like the stomach to protect you from high acid.

BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight your in and things (carbs/fats) become to ferment, rancidify and cause heart burn."

And what/how I think explains how low stomach acid leads to low iron levels.

most PPI's on the labels box warning explain that Magnesium levels become low when taking PPI"s more than 6 months.

It would seem this might be true too for Iron since it too is difficult to digest/absorb without strong stomach acid.

but to answer you immediate question for summary salt water and Lysine always helped me.

but I wanted to figure out in the first place why I was low in Magnesium in my case or why Lysine helped me.

It turns out my stomach acid was too low to absorb Lysine.

see this summary from dr. myatt. where she quotes dr. wright in her online article about this topic.

Open Original Shared Link

quoting

Jonathan Wright, M.D., well-known and respected holistic physician, states that:

"Although research in this area is entirely inadequate, its been my clinical observation that calcium, magnesium, iron, zinc, copper, chromium, selenium, manganese, vanadium, molybdenum, cobalt, and many other micro-trace elements are not nearly as well-absorbed in those with poor stomach acid as they are in those whose acid levels are normal. When we test plasma amino acid levels for those with poor stomach function, we frequently find lower than usual levels of one or more of the eight essential amino acids: isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. Often there are functional insufficiencies of folic acid and/or vitamin B12."

Remember, these are essential nutrients. Deficiencies of any single one of them can cause serious health problems over time. Weak bones, diminish immune function, failing memory, loss of eyesight and many other "diseases of aging" are often the result of decreased stomach function.

Ulcers can even be caused by too little acid. Surprised? We know today that most ulcers are caused by a bacterium called h. pylori. This little beastie is killed by strong stomach acid. But when stomach acid is weak, watch out! Weak stomach acid is how h. pylori gets a foot-hold. (People with active ulcers should not supplement hydrochloric acid until the ulcer has healed)"

NOTE: if you have an ulcer don't take betaineHCL until it  has healed.

*****this is not medical advice but it has been my experience that treating my low stomach acid being misdiagnosed helped with relief of many of my nutrient deficiencies depending on strong stomach acid for absorption and why taking Lysine helped me.

because my body became low in my essential amino acids and Magnesium in my case.

I hope this is helpful and good luck with trying the Lysine.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

posterboy by the grace of God,

 

 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.