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

Swollen Tongue


Leis

Recommended Posts

Leis Rookie

Hello

I started a gluten free diet 3 weeks ago.  I have been bedbound for 11 years witha diagnosis of cfs.  I have been feeling a bit more clear headed but the last week ive started to slur my words.  Ive never had this before.  Today people cant understand me at all.  Its really got me quite scared.  I think my tongue is swollen.  Why is this happening?  I know i havent accidently eaten any gluten.  Would really appreciate some help, thanks. Leis.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Do you have nursing care? If its a swollen tongue, that's usually an allergy and could be serious if it impedes breathing. And you know slurring could be a sign of a stroke. I think you need immediate medical care.

Leis Rookie

Do you have nursing care? If its a swollen tongue, that's usually an allergy and could be serious if it impedes breathing. And you know slurring could be a sign of a stroke. I think you need immediate medical care.

Thanks Kareng

My boyfriend looks after me.  I dont think its a stroke as it came on gradually over the week.  I thought it might be an allergy but ive been eating quite simple food and nothing that ive never had before. Its not hugely swollen, just feels big in my mouth and is over my teeth instead of inbetween them.  I think its just too swollen to form words properly.  I hope it goes away, its embarrassing!  

kareng Grand Master

Thanks Kareng

My boyfriend looks after me.  I dont think its a stroke as it came on gradually over the week.  I thought it might be an allergy but ive been eating quite simple food and nothing that ive never had before. Its not hugely swollen, just feels big in my mouth and is over my teeth instead of inbetween them.  I think its just too swollen to form words properly.  I hope it goes away, its embarrassing!  

 

 

Ok....

 

Maybe you should call your doctor and run it by him/her.

anonymous-123 Rookie

the tongue swelling happens to me usually a day or two after i eat pasta, bread, or beer.  but i'm not sure if that's your cause b/c you said you went gluten free.  it could be a different food that isn't agreeing with you.  when i tell my dr's about my swollen tongue they look at me like i'm crazy and i'm making it up and i've told the emergency room at the hospital, my allergy dr. and my primary dr. and no one can explain it, so i just pay attention to what i've eatin that was different that may have caused it.  it usually doesn't happen immediately after eating. sometimes it happens the day after eating pasta or bread or a new food that i haven't eaten before or in a while.  stress also makes me flare up.  i take zyrtec daily and I find that drinking peppermint tea and eating a tums before bed helps my swollen tongue come down a bit.   i think it has to do with my stomach.  not sure if that's same for you, but just try to pay attention when it happens and what you ate prior to it happening even what you ate the day before it happens.  i would also say you should contact your dr. just to get a checkup just in case it gets worse.  my dr. did give me an epipen just in case it were to ever get really bad.  good luck to you and hope your symptoms improve.

shadowicewolf Proficient

Allergies randomly come on. I never knew i had a tomato allergy until after i went gluten free.

Leis Rookie

Thanks for your replies. I was thinking maybe an allergy was showing up.  Think it might be milk, i drink the lactose free stuff as im lactose intolerant.  Boo, i hope not.  The inside of my cheeks are swollen too, i hope this isnt going to happen all the time. 


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



Celiac.com Sponsor (A8-M):



anonymous-123 Rookie

Thanks for your replies. I was thinking maybe an allergy was showing up.  Think it might be milk, i drink the lactose free stuff as im lactose intolerant.  Boo, i hope not.  The inside of my cheeks are swollen too, i hope this isnt going to happen all the time. 

wow that definitely does sound like an allergy.  make sure to keep benedryl on hand just in case it gets worse.  hope you figure it out.  good luck and hope you feel better soon.

Leis Rookie

Well its still swollen today but my inner cheeks seem to be more of a problem.  Theyve swelled up quite alot in the night!  Quite sore too as my teeth are cutting them and my tongue.  I tried an anti histamine last night but it didnt make much difference.  Im going to stay away from milk today and see if that helps! Thanks Leis x

anonymous-123 Rookie

i was told by my dr that if i ingested something that caused my allergic reaction, to take pepcid as it also works like an antihistamine in the gut.  but i'm not sure if pepcid is gluten free or not.  i only took it when i had my huge hive breakout and stopped taking it after that. 

 

now if i have gut issues i just drink peppermint tea and tums or lemon water. i always take a daily antihistamine such as zyrtec. and when zyrtec doesn't work i take a benedryl on top of that. 

 

if you are not on antihistamines, maybe you should have allergy testing done.  that will tell you if you have any food allergies.

1desperateladysaved Proficient

I just heard Dr. David Hilden on WCCO radio, Twin Cities, MN.   He felt If you had a swollen tongue you may have Celiac Disease.  He felt that could cause mal-absorption of vitamin B 12.  I was intensly interested since my tongue feels too big for my mouth sometimes.  I am on B 12.  I am not sure I am absorbing it.

 

Date today.  Sunday March 10,2013.  Perhaps one could find information if they asked WCCO.

 

I was truly amazed a doctor thought of the Celiac possibility right away.  I believe canker sores were mentioned in the same case as the swollen tongue.

 

Now, I will add my own thoughts.  I think even with supplements that mal absorption is an issue sometimes, so B 12 might be short.  What makes it better sometimes than others is what one might have to figure out to gain control.

cavernio Enthusiast

My tongue never feels right, dry or swollen or sores on the sides. My b12 tests in a safe range, but I still take 1000ug every few days since it's never been too high. Dairy makes my tongue really dry. Never so bad as you're describing it though, it's a little extreme and warrants someone looking at it.

A lot of people seem to report feeling worse at around a 1 month mark, before they get better.

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. - cristiana replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      2

      Celiac support is hard to find

    2. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Newly diagnosed mam to coeliac 11 year old

    3. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      2

      Celiac support is hard to find

    4. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    5. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

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

    • Total Members
      132,958
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @tiffanygosci Well done for reaching out,  fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier.     I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be, particularly at first, when you don't know anyone with celiac disease.  *see link for film below. I realise now how blessed I was that when I was diagnosed two friends were also diagnosed around the same time, as we shared a lot of tips and recipes at the start.   Since then the number of people I know diagnosed with coeliac disease has grown and grown, there seems to be a much greater awareness of it among healthcare professionals and the public, at least this side of the Atlantic (I'm British).  I think in time you may find this, too. That said, those two coeliac buddies were 'straightforward' cases who seemed to recover very quickly when on a gluten-free diet - I struggled for some time.  So I found that I spent much more time discussing things with this online coeliac family. If you have any more questions, we're here for you.  I hope your event on 15th goes well.  Sounds like a good start!  I like you am not keen on Facebook, but perhaps setting up an account short-term might help? * https://vimeo.com/486284734 Cristiana     
    • cristiana
      You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy.   Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter has vitamin and mineral deficiencies, which is highly likely,    In the UK tests are generally offered on the NHS for B12 and ferritin, and sometimes vitamin D.  Shortages in these can really cause any anxiety or depression or ramp it up. If you do end up supplementing, make sure your GP is aware as levels do need to be monitored, for example,  too much ferritin can cause huge health issues. Re: anxiety, definitely speak to a GP or another health care professional about this if it is an issue. Hopefully the Coeliac Society of Ireland will also be able to help. Cristiana  
    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
×
×
  • 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.