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. - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    2. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    5. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

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

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.