Swollen Tongue no one knows why

Posted by iandalrymple @iandalrymple, Feb 20, 2017

It started last August with my lips and cheek swelling lasted about 24 hours, a couple of weeks later it was my tongue. I’ve ended up in the emergency room because of the swelling but seven months later the Doctors have told me they don’t know. I have had all the blood work done and all looks good but every 20 to 30 days my tongue swells so much I can’t talk or even drink water. When this does happen all I take is 60mg of prednisone (don’t know if it actually works) my main concern is that I might choke especially when it happens in the middle of the night. Any ideas anyone?

@johannahansen

We are in the exact same boat! Have you been tested for vitamin deficiencies or thyroid problems?
I reviewed my past thyroid labs and they are all over the place, I have a lot of the symptoms of hypothyroidism, I will be seeing my doc again to further test them rather than just the TSH.
What also makes me think it is not an allergy is that when I take Benadryl there is no relief.

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Yes! My thyroid was normal and all my blood work normal. I saw an allergist and he did not think it was an allergy. My antibodies were low. He just called it unexplained angioedema 🙄

REPLY

Weirdddd. I have never had a doc tell me angioedema. They always tell me it needs to be much bigger to be considered angioedema. They all say it is just normal swelling. I know that during the day we do and eat things thst are irritating to the tongue.

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Several thoughts (which I will preface with the statement that I am NOT a medical professional, just a poor unfortunate soul who's done a lot of research trying to figure out what's wrong with her):

1. If you have not already, have your Vitamin B12 checked; a sore, swollen, "beefy red" (boy was that weird to read in my office visit notes) and/or smooth tongue is characteristic of a B12 deficiency. The ridges/ripples/scallops/waves along the edges are typical signs of a swollen tongue, regardless of cause ( @johannahansen and @sbouchard77 ). Wearing a mouth guard, even if just for one night to assess if it's a teeth grinding problem, should "clear out" the ridges temporarily. Someone mentioned a "borderline low" B12 deficiency; I would advise him or her to check their actual lab results, as often there will be a level that, while not flagged low/deficient, comes with a disclaimer that some people within that level will still show symptoms of deficiency that should warrant considering treatment. Of particular importance to note is the frequent mention of proton-pump inhibitors (PPIs) including Pantoprazole/Protonix and Omeprazole/Prilosec and to a slightly lesser extent H2 blockers including Famotidine/Pepcid and Ranitidine/Zantac can prevent absorption of vitamins (B12 in particular) with long-term use and are associated with increased risk of B12 deficiency.

2. My immediate reaction when reading a lot of these posts was "Mastocytosis and/or Mast Cell Activation Disorder." These cause allergic reactions, often unpredictable and from varying and often changing triggers, that can be as severe as an anaphylactic reaction like we normally associate with bee stings (lip/tongue/throat swelling, hives, itching, etc.). These are most frequently treated by allergists/immunologists (like most of you were) and are typically treated with a regimen of the drugs you received: H1 antihistamines (Claritin/Loratidine, Zyrtec, etc.); H2 antihistamines (Famotidine/Pepcid, Ranitidine/Zantac, etc.); Leukotriene Inhibitors (Singulair/Montelukast, etc.) and when GERD continues to be problematic, a PPI (Omeprazole/Prilosec, Pantoprazole/Protonix, etc.). Mastocytosis is fairly well-known, so I suspect you would have likely been tested for that by any competent allergist/immunologist (usually involves a consistently elevated tryptase level), but Mast Cell Activation Syndromes are a more "recent" discovery/definition and may not be as widely known. Check out https://tmsforacure.org/overview/ for a wealth of information on both mastocytosis and mast cell activation syndromes.

3. In terms of general allergies, if you have not already, ask about having your Total IgE – if your level is normal, it's unlikely (although not impossible) that allergies are playing a role; learn more at https://labtestsonline.org/tests/total-ige. You can also have Allergen-specific IgE levels tested if there's something you specifically suspect is causing your symptoms (ex., the question about dog dander or food allergies); see https://labtestsonline.org/tests/allergy-blood-testing.

4. Finally, as more of a long-shot, I wanted to mention the recent discovery of meat allergies resulting from tick bites. @jerryd 's mention of moving to a lakefront location with lots of open fields reminded me of an article I read recently about it. If I recall correctly, it's more frequently associated with men and there's a delayed reaction between ingestion and symptoms. OH, I just found this article — Jerry, tell me this doesn't sound like you?: "If you start to have trouble breathing in the middle of the night, you probably are not going to blame the hamburger you had for dinner." https://labtestsonline.org/news/meat-allergy-tick-bites-most-common-cause-anaphylaxis-clinic

Good luck folks! Hope you find some relief/answers.

Liked by JerryD

REPLY
@peabody88

Several thoughts (which I will preface with the statement that I am NOT a medical professional, just a poor unfortunate soul who's done a lot of research trying to figure out what's wrong with her):

1. If you have not already, have your Vitamin B12 checked; a sore, swollen, "beefy red" (boy was that weird to read in my office visit notes) and/or smooth tongue is characteristic of a B12 deficiency. The ridges/ripples/scallops/waves along the edges are typical signs of a swollen tongue, regardless of cause ( @johannahansen and @sbouchard77 ). Wearing a mouth guard, even if just for one night to assess if it's a teeth grinding problem, should "clear out" the ridges temporarily. Someone mentioned a "borderline low" B12 deficiency; I would advise him or her to check their actual lab results, as often there will be a level that, while not flagged low/deficient, comes with a disclaimer that some people within that level will still show symptoms of deficiency that should warrant considering treatment. Of particular importance to note is the frequent mention of proton-pump inhibitors (PPIs) including Pantoprazole/Protonix and Omeprazole/Prilosec and to a slightly lesser extent H2 blockers including Famotidine/Pepcid and Ranitidine/Zantac can prevent absorption of vitamins (B12 in particular) with long-term use and are associated with increased risk of B12 deficiency.

2. My immediate reaction when reading a lot of these posts was "Mastocytosis and/or Mast Cell Activation Disorder." These cause allergic reactions, often unpredictable and from varying and often changing triggers, that can be as severe as an anaphylactic reaction like we normally associate with bee stings (lip/tongue/throat swelling, hives, itching, etc.). These are most frequently treated by allergists/immunologists (like most of you were) and are typically treated with a regimen of the drugs you received: H1 antihistamines (Claritin/Loratidine, Zyrtec, etc.); H2 antihistamines (Famotidine/Pepcid, Ranitidine/Zantac, etc.); Leukotriene Inhibitors (Singulair/Montelukast, etc.) and when GERD continues to be problematic, a PPI (Omeprazole/Prilosec, Pantoprazole/Protonix, etc.). Mastocytosis is fairly well-known, so I suspect you would have likely been tested for that by any competent allergist/immunologist (usually involves a consistently elevated tryptase level), but Mast Cell Activation Syndromes are a more "recent" discovery/definition and may not be as widely known. Check out https://tmsforacure.org/overview/ for a wealth of information on both mastocytosis and mast cell activation syndromes.

3. In terms of general allergies, if you have not already, ask about having your Total IgE – if your level is normal, it's unlikely (although not impossible) that allergies are playing a role; learn more at https://labtestsonline.org/tests/total-ige. You can also have Allergen-specific IgE levels tested if there's something you specifically suspect is causing your symptoms (ex., the question about dog dander or food allergies); see https://labtestsonline.org/tests/allergy-blood-testing.

4. Finally, as more of a long-shot, I wanted to mention the recent discovery of meat allergies resulting from tick bites. @jerryd 's mention of moving to a lakefront location with lots of open fields reminded me of an article I read recently about it. If I recall correctly, it's more frequently associated with men and there's a delayed reaction between ingestion and symptoms. OH, I just found this article — Jerry, tell me this doesn't sound like you?: "If you start to have trouble breathing in the middle of the night, you probably are not going to blame the hamburger you had for dinner." https://labtestsonline.org/news/meat-allergy-tick-bites-most-common-cause-anaphylaxis-clinic

Good luck folks! Hope you find some relief/answers.

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Found the original article I read! It's a little lengthy/scientific, but if anyone's interested: https://www.nytimes.com/2018/07/24/magazine/what-the-mystery-of-the-tick-borne-meat-allergy-could-reveal.html

@jerryd – here were some highlights I thought might be relevant for you:
"Once sensitized, some victims find that they can no longer tolerate beef, pork, lamb — even milk or butter, foodstuffs with only very small amounts of alpha-gal. Several factors can also affect the severity of the allergic reaction, or if there is an allergic reaction at all. Grilled meat is less allergenic than other methods of preparation that preserve more of its fat. Fatty meat leads to more alpha-gal crossing a person’s gut barrier into his or her circulatory system, triggering a stronger immune reaction than leaner cuts. A study of German patients also found that alcohol imbibed with meat can push people toward an allergic reaction, as can exercise; both actions make the gut more permeable, exposing the immune system to more alpha-gal."

"The good news is that, provided you’re not bitten by a tick again, sometimes the meat allergy fades on its own. A year after his visit to the emergency room, under Scott Commin’s supervision, Niegelsky began introducing small amounts of lean meat into his diet. The idea is to test the possibility that his allergic alpha-gal antibodies have subsided to the point that his immune system no longer attacks the sugar. It took Niegelsky about a week to muster the courage to take his first bite of pork tenderloin. He waited anxiously for six hours. When nothing happened, he moved on to steak."

Sure is a fascinating possibility (At least to a nerd like me!)!

REPLY
@peabody88

Several thoughts (which I will preface with the statement that I am NOT a medical professional, just a poor unfortunate soul who's done a lot of research trying to figure out what's wrong with her):

1. If you have not already, have your Vitamin B12 checked; a sore, swollen, "beefy red" (boy was that weird to read in my office visit notes) and/or smooth tongue is characteristic of a B12 deficiency. The ridges/ripples/scallops/waves along the edges are typical signs of a swollen tongue, regardless of cause ( @johannahansen and @sbouchard77 ). Wearing a mouth guard, even if just for one night to assess if it's a teeth grinding problem, should "clear out" the ridges temporarily. Someone mentioned a "borderline low" B12 deficiency; I would advise him or her to check their actual lab results, as often there will be a level that, while not flagged low/deficient, comes with a disclaimer that some people within that level will still show symptoms of deficiency that should warrant considering treatment. Of particular importance to note is the frequent mention of proton-pump inhibitors (PPIs) including Pantoprazole/Protonix and Omeprazole/Prilosec and to a slightly lesser extent H2 blockers including Famotidine/Pepcid and Ranitidine/Zantac can prevent absorption of vitamins (B12 in particular) with long-term use and are associated with increased risk of B12 deficiency.

2. My immediate reaction when reading a lot of these posts was "Mastocytosis and/or Mast Cell Activation Disorder." These cause allergic reactions, often unpredictable and from varying and often changing triggers, that can be as severe as an anaphylactic reaction like we normally associate with bee stings (lip/tongue/throat swelling, hives, itching, etc.). These are most frequently treated by allergists/immunologists (like most of you were) and are typically treated with a regimen of the drugs you received: H1 antihistamines (Claritin/Loratidine, Zyrtec, etc.); H2 antihistamines (Famotidine/Pepcid, Ranitidine/Zantac, etc.); Leukotriene Inhibitors (Singulair/Montelukast, etc.) and when GERD continues to be problematic, a PPI (Omeprazole/Prilosec, Pantoprazole/Protonix, etc.). Mastocytosis is fairly well-known, so I suspect you would have likely been tested for that by any competent allergist/immunologist (usually involves a consistently elevated tryptase level), but Mast Cell Activation Syndromes are a more "recent" discovery/definition and may not be as widely known. Check out https://tmsforacure.org/overview/ for a wealth of information on both mastocytosis and mast cell activation syndromes.

3. In terms of general allergies, if you have not already, ask about having your Total IgE – if your level is normal, it's unlikely (although not impossible) that allergies are playing a role; learn more at https://labtestsonline.org/tests/total-ige. You can also have Allergen-specific IgE levels tested if there's something you specifically suspect is causing your symptoms (ex., the question about dog dander or food allergies); see https://labtestsonline.org/tests/allergy-blood-testing.

4. Finally, as more of a long-shot, I wanted to mention the recent discovery of meat allergies resulting from tick bites. @jerryd 's mention of moving to a lakefront location with lots of open fields reminded me of an article I read recently about it. If I recall correctly, it's more frequently associated with men and there's a delayed reaction between ingestion and symptoms. OH, I just found this article — Jerry, tell me this doesn't sound like you?: "If you start to have trouble breathing in the middle of the night, you probably are not going to blame the hamburger you had for dinner." https://labtestsonline.org/news/meat-allergy-tick-bites-most-common-cause-anaphylaxis-clinic

Good luck folks! Hope you find some relief/answers.

Jump to this post

eabody88 WOW and WOW!! Thank you so much for posting such an amazing, informative and very complete synopsis for all of us. I will be reading the information you have referenced and will respond.
I thank you thank you for looking into these issues!

Liked by peabody88

REPLY
@peabody88

Several thoughts (which I will preface with the statement that I am NOT a medical professional, just a poor unfortunate soul who's done a lot of research trying to figure out what's wrong with her):

1. If you have not already, have your Vitamin B12 checked; a sore, swollen, "beefy red" (boy was that weird to read in my office visit notes) and/or smooth tongue is characteristic of a B12 deficiency. The ridges/ripples/scallops/waves along the edges are typical signs of a swollen tongue, regardless of cause ( @johannahansen and @sbouchard77 ). Wearing a mouth guard, even if just for one night to assess if it's a teeth grinding problem, should "clear out" the ridges temporarily. Someone mentioned a "borderline low" B12 deficiency; I would advise him or her to check their actual lab results, as often there will be a level that, while not flagged low/deficient, comes with a disclaimer that some people within that level will still show symptoms of deficiency that should warrant considering treatment. Of particular importance to note is the frequent mention of proton-pump inhibitors (PPIs) including Pantoprazole/Protonix and Omeprazole/Prilosec and to a slightly lesser extent H2 blockers including Famotidine/Pepcid and Ranitidine/Zantac can prevent absorption of vitamins (B12 in particular) with long-term use and are associated with increased risk of B12 deficiency.

2. My immediate reaction when reading a lot of these posts was "Mastocytosis and/or Mast Cell Activation Disorder." These cause allergic reactions, often unpredictable and from varying and often changing triggers, that can be as severe as an anaphylactic reaction like we normally associate with bee stings (lip/tongue/throat swelling, hives, itching, etc.). These are most frequently treated by allergists/immunologists (like most of you were) and are typically treated with a regimen of the drugs you received: H1 antihistamines (Claritin/Loratidine, Zyrtec, etc.); H2 antihistamines (Famotidine/Pepcid, Ranitidine/Zantac, etc.); Leukotriene Inhibitors (Singulair/Montelukast, etc.) and when GERD continues to be problematic, a PPI (Omeprazole/Prilosec, Pantoprazole/Protonix, etc.). Mastocytosis is fairly well-known, so I suspect you would have likely been tested for that by any competent allergist/immunologist (usually involves a consistently elevated tryptase level), but Mast Cell Activation Syndromes are a more "recent" discovery/definition and may not be as widely known. Check out https://tmsforacure.org/overview/ for a wealth of information on both mastocytosis and mast cell activation syndromes.

3. In terms of general allergies, if you have not already, ask about having your Total IgE – if your level is normal, it's unlikely (although not impossible) that allergies are playing a role; learn more at https://labtestsonline.org/tests/total-ige. You can also have Allergen-specific IgE levels tested if there's something you specifically suspect is causing your symptoms (ex., the question about dog dander or food allergies); see https://labtestsonline.org/tests/allergy-blood-testing.

4. Finally, as more of a long-shot, I wanted to mention the recent discovery of meat allergies resulting from tick bites. @jerryd 's mention of moving to a lakefront location with lots of open fields reminded me of an article I read recently about it. If I recall correctly, it's more frequently associated with men and there's a delayed reaction between ingestion and symptoms. OH, I just found this article — Jerry, tell me this doesn't sound like you?: "If you start to have trouble breathing in the middle of the night, you probably are not going to blame the hamburger you had for dinner." https://labtestsonline.org/news/meat-allergy-tick-bites-most-common-cause-anaphylaxis-clinic

Good luck folks! Hope you find some relief/answers.

Jump to this post

Thank you for such a detailed response!
My vitamin b12 level was within the reference range but I did have a doc tell me it is boarderline low.

I have also had various allergy blood tests, allergy skin tests, and inflammation markers that are all normal.

I have had a few instances of horrible asthma/illness in the recent months (my anxiety kicks out a lot of Histamine causing me to be itchy, have already had labs to prove it’s not liver issues) and I’ve been on prednisone bursts for that. The swelling is still there. I ask my boyfriend when it feels and looks swollen to me and he says no different than normal. I might have to just top it off as anxiety (I have a ton or health anxiety and am about to start a new medication, hoping this one works) it might just be TMJ and me pushing my tongue into my teeth.
Another thought I had was the TMJ narrowed my teeth? I’ll have to check with my dentist.

I already take a ppi along with Zantac (as my gerd has kicked up a ton with my anxiety) and have taken montelukast in the past with no change.

Of note I should mention the swelling never affects my breathing, just puts me into a panic. Yes I’ve had asthm issues recently but it has been pneumonia and typical wheezing (only heard in the lower lungs with a stethoscope) so not an upper airway issue

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