Tongue Still Swollen A Month After Gluten Challenge Ended

[greenbeanie]

I am recovering from a six-week gluten challenge. At the initial consult, the GI took one look at my rash and my long history of unexplained digestive and neurological symptoms and said that we have to do an endoscopy right away because she was almost certain I have celiac. We agreed that I should go gluten-free permanently right after the endo, regardless of the results - but we were both clearly expecting the biopsy to show something, especially since my daughter was just diagnosed with celiac.

 

Well, my biopsy showed gastritis and esophagitis (as well as a hiatal hernia), but it did not show celiac. Four biopsies were taken. They did not do lymphocyte counts like they did for my daughter, but the pathology report said that the villous structure was normal. By the time I went for the follow-up visit three weeks later, the diarrhea and symptoms of gastritis and esophagitis were already almost gone. My hair - which had started falling out in handfuls in the shower every day during the gluten challenge - was back to normal. This was all good.

 

However, my tongue and lips had also gotten quite swollen during the challenge. At the time, so much weird stuff was happening that it wasn't a huge concern. My tongue is very scalloped, and there are also teeth indentation marks from swelling on the inside of my lips and the sides of my cheeks. This had happened on and off before, but it got much worse during the challenge. The swelling worsens and lessens gradually, with no obvious pattern, so it's very uncomfortable but not acutely alarming like it would be for an anaphylactic reaction. (I have an epi-pen and would not hesitate to use it if necessary, though.) Antihistimines help slightly, but not much. I have been strictly gluten-free for almost a month and have cooked all my own food at home, in a gluten-free kitchen with new spoons, strainers, and whatnot. I don't wear make-up, use only vaseline on my lips, switched to an all-natural baking soda toothpaste, and stopped drinking anything but water. None of that has helped. My tongue and lips sting badly whenever I eat anything but cucumbers and plain yogurt.

 

My TSH is normal, and my doctor won't run other thyroid tests. I'm waiting for the results of B vitamin level tests now, but I actually had high B12 a few years ago and I've been taking B-complex supplements occasionally, so it seems unlikely that I'm deficient. The GI doctor insists that the tongue swelling couldn't be from gluten, since it's still so bad a month after going strictly gluten-free. I have an appointment for further food allergy testing in three weeks, but my previous test were negative. I have no idea what's causing this, but it's pretty scary. 

 

Has this happened to anyone else? Is my doctor right that the swelling would be gone by now if it was caused by gluten? I know the gluten challenge seriously messed my body up, but the tongue swelling is just as bad after a month gluten-free as it was in the midst of it (whereas all the other symptoms are at least improving slowly).

[1desperateladysaved]

I believe my tongue does swell when I eat gluten.  My gums are also said to look irritated.  Personally, I think it could be from gluten even a month later.  My symptoms hung on longer then a month and some are still going.  It does seem likely that you may have other allergies/intolerances that may cause this swelling.

 

D

[shadowicewolf]

I am recovering from a six-week gluten challenge. At the initial consult, the GI took one look at my rash and my long history of unexplained digestive and neurological symptoms and said that we have to do an endoscopy right away because she was almost certain I have celiac. We agreed that I should go gluten-free permanently right after the endo, regardless of the results - but we were both clearly expecting the biopsy to show something, especially since my daughter was just diagnosed with celiac.

 

Well, my biopsy showed gastritis and esophagitis (as well as a hiatal hernia), but it did not show celiac. Four biopsies were taken. They did not do lymphocyte counts like they did for my daughter, but the pathology report said that the villous structure was normal. By the time I went for the follow-up visit three weeks later, the diarrhea and symptoms of gastritis and esophagitis were already almost gone. My hair - which had started falling out in handfuls in the shower every day during the gluten challenge - was back to normal. This was all good.

 

However, my tongue and lips had also gotten quite swollen during the challenge. At the time, so much weird stuff was happening that it wasn't a huge concern. My tongue is very scalloped, and there are also teeth indentation marks from swelling on the inside of my lips and the sides of my cheeks. This had happened on and off before, but it got much worse during the challenge. The swelling worsens and lessens gradually, with no obvious pattern, so it's very uncomfortable but not acutely alarming like it would be for an anaphylactic reaction. (I have an epi-pen and would not hesitate to use it if necessary, though.) Antihistimines help slightly, but not much. I have been strictly gluten-free for almost a month and have cooked all my own food at home, in a gluten-free kitchen with new spoons, strainers, and whatnot. I don't wear make-up, use only vaseline on my lips, switched to an all-natural baking soda toothpaste, and stopped drinking anything but water. None of that has helped. My tongue and lips sting badly whenever I eat anything but cucumbers and plain yogurt.

 

My TSH is normal, and my doctor won't run other thyroid tests. I'm waiting for the results of B vitamin level tests now, but I actually had high B12 a few years ago and I've been taking B-complex supplements occasionally, so it seems unlikely that I'm deficient. The GI doctor insists that the tongue swelling couldn't be from gluten, since it's still so bad a month after going strictly gluten-free. I have an appointment for further food allergy testing in three weeks, but my previous test were negative. I have no idea what's causing this, but it's pretty scary. 

 

Has this happened to anyone else? Is my doctor right that the swelling would be gone by now if it was caused by gluten? I know the gluten challenge seriously messed my body up, but the tongue swelling is just as bad after a month gluten-free as it was in the midst of it (whereas all the other symptoms are at least improving slowly).

I would consider going to the ER when that happens.

[greenbeanie]

It's been constantly swollen for over two months, and it gets better and worse slowly (but never goes away), so there's not any particular time when it seems like an emergency. Someone suggested that it may be angio lymphatic edema, so I'll ask the allergist about that. Or maybe just a general histamine intolerance that was somehow exacerbated by the gluten challenge? I hope the allergist will have some suggestions. Meanwhile, I'll be eating a lot of cucumbers and yogurt in an attempt to stop the burning feeling...