Jump to content

  • 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):

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
      134,081
    • Most Online (within 30 mins)
      10,442
    Rowan-Noctis
    Newest Member
    Rowan-Noctis
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...