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DH , no allerigies , angeodema

Indy Diana

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Indy Diana Newbie
Indy Diana
Posted

Has anyone ever had angeodema with DH? I went through 4 months of allergy testings and even spent time at Cleveland Clinic to try to figure out why my tongue swells, no allerigies?

After a punch biopsy I was told I had DH and put on dapsone and told to go on gluten-free diet. They are still trying to tell me this has nothing to do with the tongue swelling...  I'm going crazy trying to find the association to why my tongue will swell, I have and epi pen , and have made a few trips to the ER, what is weird it only swells on one side. So has anyone with DH had this happen to them?

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cyclinglady Grand Master
cyclinglady
Posted

I get facial and tongue swelling usually from medications -- even ibuprofen, aspirin and acetaminophen!   I have regular allergies (IgE) and some odd ones (lots of hives).   I am not sure that it is related to celiac disease/Hashimoto's (autoimmune) or it is a Mast Cell issue (neither does my allergist).  It just falls under the umbrella of hypersensitivity.

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 Did this start after you went on Dapsone?

How long have you been gluten free?  

Do antihistamines help?  

Indy Diana Newbie
Indy Diana
Posted
  • Author

Thanks for the feedback. I have had the rash for over a year and was put on Dapsone, It alway in the beginning came up on my left arm and I had breast cancer so I didn't take the chance of the punch biopsy until this year. In August my tongue started to swell. The removed all meds that might be causing it and put me through complete allergy testing even the C-1 thru C-4 and no autoimmune or food allerigies. So when my tongue swells I use my epi pen and zyrtex and benydril and pray I don't end up in ER. If is getting so frustrating that they can't explain why as I thought going to Cleveland Clinic would have had answers. So after my punch biopsy on my other arm ( finally) it was DH and I just started gluten-free in the past week.  I hope that the tongue swells stop. 

 

Thanks again for your feed back and the link

squirmingitch Veteran
squirmingitch
Posted

I have a rather large torus palate

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I've had it as far back as I can remember. It never bothered me except when the dentist puts those darn x-ray things in your mouth that you have to bite down on. Oh man, those things stick into that torus palate & hurt like the devil! Well, roughly 3 years before celiac diagnosis & going gluten free, I began having really big problems with the torus palate. It would swell up like crazy & get extremely painful. It would get so bad that I could hardly swallow. It would get excruciatingly painful even when I was doing nothing. It felt raw. It felt like there was not room in my mouth for my tongue. This would come & go with seemingly no rhyme or reason. Unfortunately by the time the dentist could ever see me to check it, it had always calmed down to normal. 

I had no idea that was/could be connected to celiac but when I did find out I have celiac & went gluten free, it wasn't too very long after that that the torus palate calmed back down permanently (with the exception of when I get glutened). 

All part of the intense body wide inflammation untreated celiac can cause.

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