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 / Blisters

eerickso

Recommended Posts

eerickso Newbie
eerickso
Posted

Yesterday my tongue was feeling very swollen and almost like I had burned it. Today I have a blister under my tongue. I've had burning sensations over the last few weeks. I've been sticking to a gluten-free diet for almost two weeks. Do the current mouth and tongue issues mean that I'm somehow still being glutened?

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

I think I get a swollen tongue when I eat something I am intolerant of or if I get some gluten.

 

D

MollyBrack Newbie
MollyBrack
Posted

Yesterday my tongue was feeling very swollen and almost like I had burned it. Today I have a blister under my tongue. I've had burning sensations over the last few weeks. I've been sticking to a gluten-free diet for almost two weeks. Do the current mouth and tongue issues mean that I'm somehow still being glutened?

I spent months trying to figure out why my tongue was swollen, painful and looked like a roadmap. I do have "geographic tongue" but this was very different. My doc had no ideas, but I finally decided after a lot of internet research (for better or worse) that I had Candida. I went on THREE courses of anti-fungal drugs and completely changed my diet to no avail. Finally I had some blood work done that showed iron-deficiency which can cause swollen, painful tongue. 

 

So my advice is to get your iron levels checked. 

Chrisz1000 Newbie
Chrisz1000
Posted

I always had a swollen tongue before I had even heard of Celiac.It developed a speech impediment in my late teens which gave me a mumbling problem and inability to pronounce certain sounds. I never realised I had a swollen tongue because it was always well, just me. I was always getting ulcers too.  

 

Once I went gluten free I noticed within a few weeks that my tongue had reduced in size and I could talk easily and my diction and clarity was much better.

 

5 months into my gluten free lifestyle and the tongue is a normal size, it only swells with a glutening.I have, however, just gotten over a period of having sores in my mouth for 1 week - they were at the back of the mouth, gums, top of the mouth with ulcers here and there.

 

These sores and ulcers come and go in a similar manner to random acne spots on the rest of my body. It had been 4 weeks since my last accidental glutening so I put it down to the detox process of my body cleaning out the antibodies and toxins associated with a glutening.

 

I went through the same thing as you and I no I wasn't being glutened elsewhere, its just part of the healing/withdrawal/detox process....hopefully!

eerickso Newbie
eerickso
Posted
  • Author

Thank you all for the responses. Sometimes I just want to collapse and cry each time I'm dealing with something new. So much of the recovery feels like one strong forward, two steps back. I do know my iron - and probably lots of other things - is low. I plan to follow up with a nutritionist next week.

Chris, thanks for sharing your experience. It sounds very similar. I do hope it's just part of the healing/withdrawal/detox process!

I talked to my doctor yesterday and he said to eliminate all dairy (I've already eliminated most). One day at a time ...

Chrisz1000 Newbie
Chrisz1000
Posted

eerickso... no problems. I'm glad you can relate - that's all you need sometimes, just to know you are'nt going mad or suffering from something else.

 

Cutting out Dairy is a big help to some people, helps to take away a big chunk of symptoms and further reassure you that you're not getting glutened. Have confidence in your ability to avoid gluten. For sure, in time you will know when you've made a mistake and you'll easily be able to separate out the reaction symptoms to those that linger.

 

If you haven't already, I'd recommend you start a symptom journal/diary to document your daily issues. IN time you can look back and see how a glutening affects you over 1,2 days and then how you are 1 or 2 weeks AFTER the same reaction.

greenbeanie Enthusiast
greenbeanie
Posted

I feel for you! I got a very swollen and painful tongue during my gluten challenge in May/June, with a burned feeling most of the time. I've been strictly gluten-free since late June, and it's just now starting to improve very, very slowly. The pain and swelling worsen after I eat anything fermented or containing baker's yeast or fruit or anything acidic, and a yeast-free diet has helped with the pain but didn't eliminate the swelling. I've been through the rounds with food allergy testing (negative), switched toothpastes, and even had a CT scan to rule out tumors. The swelling started a few days into the gluten challenge and worsened throughout it, so it seems obvious to me that gluten was the cause. My doctors think it's totally unrelated because my celiac tests were negative, but they're baffled too. My ferritin level was fine and some other vitamin levels were borderline low, but not low enough to explain the swelling. I'm taking sublingual B-12 for good measure, though.

Anyhow, my own experience seems to be that the swelling can take a really long time to go down even after stopping gluten. I am quite sure I'm not getting glutened - I'm making almost all my food from scratch in a gluten-free house, eating very few processed foods and only those from dedicated facilities, etc. After more than two months gluten free, it does finally seem to be improving (I hope I'm not speaking too soon!). I have no idea what the medical explanation is for why gluten would cause this problem, but I hope yours improves soon!

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

Celiac.com Sponsor (A8-M):


Chrisz1000 Newbie
Chrisz1000
Posted

Greenbeanie...I think the explanation is simply that its inflammation. Why it takes soo long to go down... thats just God playing with us.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748
    Betty Siebert
    Newest Member
    Betty Siebert
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.