dry mouth: I have Type 1 Refractory... - Gluten Free Guerr...

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dry mouth

Dona profile image
Dona
12 Replies

I have Type 1 Refractory coeliac disease, my tongue has spilt badly with holes on the tongue as well i have stopped making saliva this is making my teeth very brittle plus have to chew gum to make my mouth moist, does anyone suffer the same

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Dona profile image
Dona
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12 Replies
Liana profile image
Liana

I have a problem with too much saliva... but I do have the split in the tongue. Does anyone have any idea what causes that? It can get very tender and red at times. Sometimes it almost disappears and then at other times it gets very deep and splits into multiple fissures. I have always wondered about it.

Adnil profile image
Adnil

I have no problems with my Tongue, but I do know someone who has similar symptoms and she has been diagnosed with something called 'geographic tongue'. I know she has to avoid certain foods, but not sure what as she is also lactose intolerant. As for lack of saliva your GP should be able to prescribe you artificial saliva (drops I think), I used to work for a GP and remember doing repeat scrips for this. Hope this helps.

lessan profile image
lessan

My consultant has mentioned to me that because I am not responding to a gluten free diet & IBD has been ruled out that he is now going to test me for refractory bowel disease. I also keep getting dry mouth and gums & it's stings when I clean my teeth. Twice this month the side of my face has swollen with a rash at the same time and I was struggling to produce saliva. I was diagnosed with CD last Sept & after a while I started to get slightly better, but that is as far as it got.

Kittykat2 profile image
Kittykat2

I have been getting dry mouth and sore tongue too for a few months now.

Sometimes my mouth is sore or burns with certain things.

I bought biotene gel for the dry mouth and use it at night to help for morning really.

I often wonder what started it off a few months ago as I have been diag coeliac two and a half years now.

Lesson..... Sjogrens can have all the same symptoms you have....... I was tested but came out negative but read it can be hard to diag.

lessan profile image
lessan in reply to Kittykat2

Oh no not something else to get tested for :-)

Kittykat2 profile image
Kittykat2

Haha .......yea seems to be an endless amount of tests lately.

The saliva glands are at the side of your face and can swell with sjogrens and block.

Its another auto immune illness sometimes they come in two 's and three as we know.

Hope you get some answers

lizzygale profile image
lizzygale

I have dry mouth all the time, I get severe ulcers along the edge of my tongue but they seem to have stopped for the last 2 months. I also get swollen tongue and lips, I thought this was milk, so I cut it out, and it made no difference. My tongue is not cracked, but just rough and feels too big for my mouth some days.

I have tested positive for CD, but they also took more bloods and 4 weeks later they are still not back ! When I tried to find out what they were looking for I get fobbed off.

I thought I must still be eating something I am allergic too, didn't even cross my mind I could have something else as well. Damn.

Going to chase up the specialist again today, and everyday now until I get an answer.

Malago profile image
Malago in reply to lizzygale

About 5 years ago when I was extremely run down and exhausted my GP diagnosed Pernicious Anaemia and Hypothyroidism; one of my symptoms was some difficulty speaking as my tongue seemed too big for my mouth. Those were the first of my autoimmune diseases. Last year diagnosed with CD, prob had it for years, I believed doc's diagnosis of IBS and that little could be done for it and that the stress In my life would also account for my frequent diarrhoea. So check these other auto diseases

Kittykat2 profile image
Kittykat2

How long you been diag CD lizzy?

You may be still getting some gluten somewhere.

Low b12, can cause mouth problems as can low iron maybe they tested you for those.

Under active thyroid too , I have that and osteoporosis too.

Irene profile image
IreneAdministrator

Dona, if you are taking particular meds it may be that these are causing the dry mouth, Would recommend that you discuss this problem with your doc and he can carry out any necessary tests and also prescribe a mouth lubricant to make your mouth a bit more comfortable.

Jacks profile image
Jacks

I do have this and found that certain foods (and any mouthwash) made it worse, especially salty and acidic (tomatoes). Then for a kidney problem I was told to avoid high oxalate foods (on my already depleted food range!) and my tongue has improved dramatically. Ironically two of the highest oxalate foods are buckwheat and amaranth - substitutes for wheat in a gf diet.

Scree1972 profile image
Scree1972

I too have been having a problem with a very dry mouth aswell as a disgusting taste in my mouth aswell, that i noticed about 6 months ago. I'm also constantly chewing gum aswell.

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