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MY SUMMARY was too long so I am dividing it and see if the first 10
responses go.  I will then send the next 10.  Wow!  I was really surprised
at how much help I received for our support group member with mouth sores.
You all are awesome.  I didn't realize how often this might happen with
celiacs.  This is a LONG summary because there was so much support. I didn't
feel like I could reduce any of it so you have it all.  I hope it prints out
okay. If not, someone tell me how I should send it.   Thanks so very much.
I will let you know if he finds success.  He has lots of suggestions.- -
Sharon

 

RESPONSES to question from members of the CD online Listserv about sores in
the mouth:

 

1.         I too had the sores on my tongue and gums. I was tested and was
positive for Lichen's disease.  It is another autoimmune disease. A mouth
rinse from oral surgeon who biopsied the lesions:  dexamethasone rinse - - -
From Beverly

 

2.         Maybe he should go to his dentist - my dentist did a swab for
cancer (as a preventative). - Phyllis

3.         Vitamin B deficiency ???

 

4.         THIS IS NOT MEDICAL ADVICE!  - - My wife suffered from mouth
sores for years. I always suspected it was a vitamin deficiency and / or
stress. Early in our marriage, I read an article about amino acids and the
role they play in the human body.  Mouth sores are a variant of Herpes.
Sounds bad, but it is a variant of the sexually transmitted type of herpes.
You can research this online.  One of the items in the article was the use
of a particular amino acid - L Lysine. She takes a 500mg dosage twice daily.
Tell your member to try this. He might also consider a daily vitamin.  Next,
is he sure it's not an allergy? Mouth sores can be caused by things he is
eating. In my wife's case, she CANNOT eat almonds. If she does, it's almost
guaranteed she will have problems. He needs to keep a food log for a month.
Track and record everything he eats and drinks. It will help him determine a
possible cause or food source. Remember, it's also the family of foods. Some
apples cause her problems as well. He can search the web for lists of oral
allergies - oral allergy syndrome.  I wish him good luck. If any of my
suggestions help, he needs to pass on the information. Some family members
may be experiencing the same problem. I do ask him to visit the
yummeeyummee.com website, too. Hey, nothing is for free, right?

 

5.         Good luck to him and you.  -- Dreamee Dog's ghost writer

 

6.         A sore tongue can be from a Vitamin B12 deficiency, especially if
diet doesn't include much red meat, the best source.  Vegetarians have to
supplement because it's only found in animal sources.   For those with
unpaired absorption, the bilingual--under the tongue &skips GI system, form
of B12 works best. Spring Valley, available at Wal-Mart, makes the bilingual
in 500 mcg (~200 count) or a much higher dose with fewer tabs.  .  Cost is
maybe $5... Cost-wise price is about the same for weight, but the 500 dose
allows you to adjust dose or spread doses throughout the day.   B12 is water
soluble so body doesn't retain toxins amounts as it can with fat soluble
vitamins.  Members in our group who were getting the monthly B12 shots found
that the daily subliminal dose worked better.   With the shots, energy
levels would started dropping off about a week before the next shot was due,
then it took another week to get back up to speed, because it provided a
consistent level in the body. One body levels go up to normal, maintenance
dose can be adjusted.  Canker-like sore can be a result of lysine (amino
acid) deficiency specially if gf diet is high is corn, which lacks lysine.
White spots could be thrush, fungal( ?), and often affect babies.  Good
luck,  -  -  Bev in Milwaukee 

 

7.         My daughter was diagnosed with celiac at 5 years old.  She is now
23.  She has had sores on her tongue at least since she was 5 or 6.  She is
strictly gluten free.  Her sores look like roundish raised patches that
sometimes have a white rim around them.  She also  gets cracks in her
tongue.  It looks really awful and it is painful when she eats some acidic
foods.  She has been to dentists, pediatrician, adult dr., endocrinologist,
dermatologist, and Chinese acupuncturist/herbalist to try and get a
diagnosis and cure.  Not one of them has an answer except to say it is
possibly "geographic tongue" and NO cure and NO treatment.  "It will go
away"...not.  The Chinese dr. told my daughter that her Yin and Yang were
not balanced.  She gave her some little round bee bees and B12 to take.
That did not help either. I wish I (she) knew if there was ANYTHING we could
do to help it clear up.  Please share my information and let me know if your
friend gets any answers.  I can have my daughter even take a photo of hers
if that helps.   Btw...my daughter was also diagnosed with Hashimoto's at
age 13 and Type 1 diabetes at the age of 18.  I don't know if it is possible
that it is auto immune related?  Thank you for your post.  - - - Beth (El
Dorado Hills, CA)

 

8.         He should go and see an autoimmune/rheumatology dr.  -  I hope
this helps, - - Kate

 

9.         Has he been checked for bacteria overgrowth.  I have been
diagnosed for over 2 decade's and still get mouth sores from time to time.

 

10.     I completely cured my mouth sores when I started accidentally taking
4000 IU of vitamin D3, instead of the 2000 I used to take
(identical-appearing labels).  I now take about 3000 (including amount in my
multi-s) and mouth sores happen only occasionally.  A friend to whom I told
this tried it and had the same results.  She now calls me her "doctor".

 


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