Swollen Tongue / Blisters

[eerickso]

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?

[1desperateladysaved]

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

 

D

[MollyBrack]

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]

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]

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]

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]

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!

[Chrisz1000]

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