Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Tongue Still Swollen A Month After Gluten Challenge Ended
0

4 posts in this topic

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).

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,090
    • Total Posts
      920,307
  • Topics

  • Posts

    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
    • No!  Once you fill the tub, if you sit in it for 3 minutes or you stay for 10... It doesn't change the amount or cost of the water.  That's only relevant if you have 3 kids to cycle thru that same water.  Is your hub bathing in the same water after you? Lol  And even if you add some more hot and stay longer....well...it's much cheaper than perscription meds, vodka or a substance that is legal in a few states.     Of course this only pertains to those of use with running water.... If you make your hub haul water from the creek or well and heat it over a fire....
    • Whether it is bona fide dermatitis herpetiformis, or severe eczema or hives or what have you, we all want to know how to stop the incessant itching.  Through all my research, the solution comes down to one thing: a good long soak in the tub-- with baking soda or Epsom salts or some kind of herbal tea, followed by a rub down in thick expensive lotion.  I don't know about you, but I was brought up to "get in, get done get out."  A long soak in the bath was a frivolous luxury, and a waste of time and hot water.  So now I'm having this awful breakout from forgetting to read a label and got wheated.  And every night I've been soaking in a baking soda bath to relieve the itching and aid my recovery.  And it's been hard! (But it's been very helpful too)  It has been hard to reconcile this "frivolous luxury and waste of time" as medically necessary!  Fortunately I've had no judging, and only support from my husband, who has had a similar upbringing.  Does anyone else struggle with this?
    • His son, Eli, had been misdiagnosed with celiac disease, so the family tried some gluten-free foods. After adding quinoa (KEEN-wah) to their diet, ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,117
    • Most Online
      1,763

    Newest Member
    cdliac3855
    Joined