• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Swollen Tongue
0

12 posts in this topic

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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!  

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,339
    • Total Posts
      935,568
  • Member Statistics

    • Total Members
      64,999
    • Most Online
      3,093

    Newest Member
    Con Smith
    Joined
  • Popular Now

  • Topics

  • Posts

    • I don't know for sure but if you have a emotional roller coaster it may be do to food sensitivities.  The pattern however may be difficult to figure out.  I also removed all grains and milk from my diet. I limit my fruit and fructose consumption (fructose binds with tryptophan in the gut) and don't eat processed food. That might be something you could try. Alcohol can be problematic as well as a diet too high in protein or fat.  Vegetables may be your best bet as far as a healthy nutritious diet.  I take glutamine powder as unbound glutamine is the preferred food for the cells that line the intestine. It is known to help with "leaky gut syndrome."  I think it really helps!!! Glutamine powder is gluten free and it may help repair damage to the brain blood barrier as well.  I also am experimenting with dark cocoa powder as it is rich in antioxidants and flavinoids which can help with healing and improving mood.  Another option would be to research the AIP diet. 
    • While celiac is primarily a genetic disease, there are cases of it appearing in people that have NO genetic history of it, nor the genes for it and it develops as a complete mutation caused by a trigger normally associated with some kind of shock or trauma to the immune system. There the same theory that that applies to bringing out the dormant gene for the disease applies that when the body and immune system is under shock or stress, and consuming gluten the body is easily confused and slips up identifying the gluten proteins as harmful and developing antibodies for them (more so common if you have another AI issue and the body is already under stress).....and like a kind of messed up vaccine you from then on pretty much have it....NOTE this is based off a article I read a while back and I can not quote sources or confirm my wording. PLEASE if anyone can correct this if I am wrong or messed up on my memory. 
    • Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease. PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.
    • It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.   Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs: "If a dog will not come to you after having looked you in the face, you should go home & examine your conscience."  ~~~ Woodrow Wilson ~~~
    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
  • Upcoming Events