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Hello everyone,

 

I was recently diagnosed with Celiac Disease via blood tests and a biopsy.  Since starting a gluten free diet my tongue has become swollen with inflamed taste buds and a sore throat (lower portion of my esophagus).  I know my endoscopy pictures showed inflammation towards the lower esophagus area.  Has anyone else had the swollen tongue and sore throat symptoms with Celiac?  Below are my endoscopy results:

 

Duodenum, second part, biopsy:
- Duodenal mucosa with focal mild villous blunting and focally
increased intraepithelial lymphocytes

Esophagus, Z-line, biopsy:
- Squamous and columnar mucosa with acute and chronic
inflammation.
- PAS-fungal stain is negative.

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Welcome to the forum!

 

I do not have an official diagnosis, but my daughter has celiac and I had symptoms for years that resolved or improved dramatically after going gluten free. I did a six-week gluten challenge about six months ago, because I'd been gluten-light for years and wanted accurate tests. To make a long story short, all of my previous symptoms got much worse during the challenge but started to improve shortly after I went gluten-free EXCEPT for a swollen tongue. My tongue and lymph nodes got really swollen during the challenge and have stayed that way ever since. It is really, really unpleasant, and I sympathize with your situation! 

 

I have been strictly gluten free, cooking almost everything from scratch in a gluten-free kitchen. The tongue swelling seems to be improving very slowly after five months, but it's still pretty bad. My taste buds sometimes get inflamed and it's painful to eat anything, and sometimes the tongue is just swollen but not very sore. I have not yet figured out the cause, but I've had a CT scan to rule out growths, allergy tests to rule out food allergies, and vitamin tests that showed a B12 level that was normal (though in the lower half of the normal range). I've switched toothpastes, stopped and started various allergy medications, and gargled in salt water. Nothing seems to help much. My endoscopy did show acute gastritis and esophagitis, but I'm pretty sure that was caused by the gluten challenge itself, since those symptoms went away within weeks of stopping gluten. Anyhow, sorry that I have no answers. I've seen an allergist, ENT, and GI doctor, and none of them have been able to explain it. I go to the dentist next week, though I really doubt it's a dental problem. My current theory is that my body was so riled up that the mysterious tongue swelling is going to take a long time to go down, and I've resigned myself to just waiting it out. I have noticed that xanthan gum (which is in many gluten-free products) aggravates my tongue, but so does a lot of other stuff, and eliminating xanthan gum for a week didn't make too much difference.

 

Good luck!

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I'd say watch out for other thing's as , corn , nut's, soy. milk products... As above check every thing!! 

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I agree with the others that this could be indicative of another food sensitivity/allergy but wanted to add that I had tongue swelling long before going gluten-free and did some research with nutritionalists and it is a common symptom of sluggish thyroid.  I started taking a Thyroid Support supplement (I get the one from Gaia Herbs - who recently confirmed for me that this is a gluten-free supplement) and I have not had the swollen tongue thing since.  You may want to get your thyroid checked.

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Hello everyone,

 

I was recently diagnosed with Celiac Disease via blood tests and a biopsy.  Since starting a gluten free diet my tongue has become swollen with inflamed taste buds and a sore throat (lower portion of my esophagus).  I know my endoscopy pictures showed inflammation towards the lower esophagus area.  Has anyone else had the swollen tongue and sore throat symptoms with Celiac?  Below are my endoscopy results:

 

Duodenum, second part, biopsy:

- Duodenal mucosa with focal mild villous blunting and focally

increased intraepithelial lymphocytes

Esophagus, Z-line, biopsy:

- Squamous and columnar mucosa with acute and chronic

inflammation.

- PAS-fungal stain is negative.

I have not yet begun the testing process, I will be seen on the 26th, no expert here at all. I do have all the symptoms of having an allergic reaction. Tongue swelling, almost feel as if throat closing. I keep track of what I am eating and drinking now, and sometimes it gets very confusing for me. I am going gluten free, and still have issues, some things get better and some do not. From what I was told by my GP, I can be sensitive to other foods either for now until all gluten is gone (hopefully) or could have other food allergies. I also get hay fever type allergies and have had those since 2003, tested for outdoor allergens and that came out negative. Was told I have IBS in 2004. I have only gotten worse and am seeking help as I write this. I have other things going on, but wanted to answer about the swelling . After reading this I am giving up milk to see if there is a problem there. What also stands out to me is being painful to eat some things! I really try to explain to others and they do not understand..Thanks you for the post and being able to read that I am not alone in quite a bit of this.

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