Let there be lips!
November 26, 2012 12:53 PM Subscribe
Help me understand what my doctor is telling me about my bizarre new party trick, where my lips swell up to Kardashian proportions. Also, help me be a good patient and actually follow through on the prescribed course(s) of action.
You are not my doctor. I am not seeking your medical opinion. I am seeing my own specialist. Yes. All of that. I just need help making an informed decision about how to move forward with those treatments, and my doctor's explanation was a little too flip to be helpful.
So my lips have started swelling. Majorly. (Warning, I look like someone's science experiment gone wrong.)
This started only after I began allergy shot treatments and has seemed to get worse over time. It stared simply enough. One random lip swelling after breakfast one day. But then it kept happening. It never concurred with my allergy shot, and if it was food, the list of things I'd eaten was too long to really ferret out what it might have been. It got more severe and more frequent - up to and including throat swelling. (I've got an epi pen, but haven't ever had to use it because I've never had respiratory distress related to this reaction.)
Before getting allergy shots: nil. Never had this reaction. Didn't even know what throat swelling felt like.
So I dutifully went back to the doctor's office and showed him the photo(s), and he said some stuff about cross-reactive food allergy, or an "enzyme deficiency." The prescribed next steps left me feeling a little confused, and although I asked questions, I think I got the "you're not paying me enough to give you a science lesson, kid" answer from the doctor. I was instructed to have a blood test (to determine if this is due to this mysterious enzyme deficiency), and also keep a food journal.
My questions:
1) First off, what's the deal with this "enzyme deficiency?" It sounds a little woo to me. And also, where the hell would such a deficiency come from? I'm 30. Could someone just become deficient like this? Could allergy shot treatments bring on such a deficiency? What are the treatments for such a deficiency? (When I asked the doctor these questions, I was told "We wont know more until we get the blood test back; the therapy for enzyme deficiency is enzyme replacement therapy." which was tautologically useless.)
2) Cross-reactive food allergy? This also sounds a bit woo to me. I've been wildly disappointed with the lack of specificity where potential food allergies are concerned. I got the whole "sensitive, not specific" nature of food allergy scratch testing. (The whole frigging panel lit up when I had the food scratch done.) I get the concept (that certain environmental allergies could be triggered by non-environmental things), but I'm at the maintenance dose for my environmental allergy treatment. Shouldn't that mean that this is less of a thing?
3) I suppose I should get the blood test done, but I'm concerned that we've created a problem and now we're in search of a solution for a problem that we didn't have to begin with. Is that ridiculous? And not knowing what kind of treatments I'm potentially facing, I'm less than thrilled with the prospects of moving forward with more seemingly-blind diagnostic tests. Do I need to do this? Do I need more/different information? Can I just nix the allergy treatments and go back to life before them where my seasonal allergies were gross but not publicly embarrassing like swollen lips?
4) And finally, a food journal? Really? I'm no man of science, but that strikes me as a wholly unhelpful method of actually figuring out what is going on. Am I not better off going on an elimination diet and slowly introducing foods back in to see if I react? A food journal just strikes me as yet another scattershot approach which may or may not yield useful data. If food journaling is the way to go, is there a way to do this that I'll actually follow through on and which will possibly yield helpful information?
tl;dr Lips/throat suddenly swelling up after a year of allergy treatments. What do I do next?
You are not my doctor. I am not seeking your medical opinion. I am seeing my own specialist. Yes. All of that. I just need help making an informed decision about how to move forward with those treatments, and my doctor's explanation was a little too flip to be helpful.
So my lips have started swelling. Majorly. (Warning, I look like someone's science experiment gone wrong.)
This started only after I began allergy shot treatments and has seemed to get worse over time. It stared simply enough. One random lip swelling after breakfast one day. But then it kept happening. It never concurred with my allergy shot, and if it was food, the list of things I'd eaten was too long to really ferret out what it might have been. It got more severe and more frequent - up to and including throat swelling. (I've got an epi pen, but haven't ever had to use it because I've never had respiratory distress related to this reaction.)
Before getting allergy shots: nil. Never had this reaction. Didn't even know what throat swelling felt like.
So I dutifully went back to the doctor's office and showed him the photo(s), and he said some stuff about cross-reactive food allergy, or an "enzyme deficiency." The prescribed next steps left me feeling a little confused, and although I asked questions, I think I got the "you're not paying me enough to give you a science lesson, kid" answer from the doctor. I was instructed to have a blood test (to determine if this is due to this mysterious enzyme deficiency), and also keep a food journal.
My questions:
1) First off, what's the deal with this "enzyme deficiency?" It sounds a little woo to me. And also, where the hell would such a deficiency come from? I'm 30. Could someone just become deficient like this? Could allergy shot treatments bring on such a deficiency? What are the treatments for such a deficiency? (When I asked the doctor these questions, I was told "We wont know more until we get the blood test back; the therapy for enzyme deficiency is enzyme replacement therapy." which was tautologically useless.)
2) Cross-reactive food allergy? This also sounds a bit woo to me. I've been wildly disappointed with the lack of specificity where potential food allergies are concerned. I got the whole "sensitive, not specific" nature of food allergy scratch testing. (The whole frigging panel lit up when I had the food scratch done.) I get the concept (that certain environmental allergies could be triggered by non-environmental things), but I'm at the maintenance dose for my environmental allergy treatment. Shouldn't that mean that this is less of a thing?
3) I suppose I should get the blood test done, but I'm concerned that we've created a problem and now we're in search of a solution for a problem that we didn't have to begin with. Is that ridiculous? And not knowing what kind of treatments I'm potentially facing, I'm less than thrilled with the prospects of moving forward with more seemingly-blind diagnostic tests. Do I need to do this? Do I need more/different information? Can I just nix the allergy treatments and go back to life before them where my seasonal allergies were gross but not publicly embarrassing like swollen lips?
4) And finally, a food journal? Really? I'm no man of science, but that strikes me as a wholly unhelpful method of actually figuring out what is going on. Am I not better off going on an elimination diet and slowly introducing foods back in to see if I react? A food journal just strikes me as yet another scattershot approach which may or may not yield useful data. If food journaling is the way to go, is there a way to do this that I'll actually follow through on and which will possibly yield helpful information?
tl;dr Lips/throat suddenly swelling up after a year of allergy treatments. What do I do next?
Best answer: IANAD, but that looks like angioedema, and it can be a side effect of allergy shots.
I would stop the shots immediately until I talk to another doctor.
posted by empath at 12:57 PM on November 26, 2012 [3 favorites]
I would stop the shots immediately until I talk to another doctor.
posted by empath at 12:57 PM on November 26, 2012 [3 favorites]
Is this a naturopath type doctor, or an MD at a regulated allergy clinic?
I'd get a second opinion ASAP. Like tomorrow. Refrain from any further allergy shots - that can become extremely serious, extremely quickly.
posted by barnone at 1:00 PM on November 26, 2012 [4 favorites]
I'd get a second opinion ASAP. Like tomorrow. Refrain from any further allergy shots - that can become extremely serious, extremely quickly.
posted by barnone at 1:00 PM on November 26, 2012 [4 favorites]
That ain't normal and all this crap about food allergies, your allergy shots, etc and so on, IS woo. My friend Di, another MeFite went on an elimination diet and was miserable, still having hiving and reactions and it turns out it had NOTHING to do with food. Nada. This was a Naturopath. FWIW.
Some people have food allergies, you know, they die if they get in contact with peanuts or shellfish or eggs. Some people have Celiac Disease, that's a thing.
A random reaction, where the only common thread is your allergy injection ISN'T about food. It's about your injection.
So, yes, stop the allergy shots and get a second opinion.
If your doctor won't take the time, and if what he/she tells you doesn't make sense to you, feel free to get a second opinion. If you're seeing an allergist, go to another allergist, or a GP. If this is your GP, see an allergist.
posted by Ruthless Bunny at 1:03 PM on November 26, 2012 [1 favorite]
Some people have food allergies, you know, they die if they get in contact with peanuts or shellfish or eggs. Some people have Celiac Disease, that's a thing.
A random reaction, where the only common thread is your allergy injection ISN'T about food. It's about your injection.
So, yes, stop the allergy shots and get a second opinion.
If your doctor won't take the time, and if what he/she tells you doesn't make sense to you, feel free to get a second opinion. If you're seeing an allergist, go to another allergist, or a GP. If this is your GP, see an allergist.
posted by Ruthless Bunny at 1:03 PM on November 26, 2012 [1 favorite]
Also, anecdotally, the last time I had issues with throat swelling as part of an allergic reaction I was hospitalized immediately. The fact that your doctor's response to this potentially life-threatening condition was to tell you to keep a fucking food diary makes me pretty goddamn concerned on your behalf, oh internets stranger person.
posted by elizardbits at 1:09 PM on November 26, 2012 [8 favorites]
posted by elizardbits at 1:09 PM on November 26, 2012 [8 favorites]
Response by poster: Just to clarify: This is an MD at an allergy clinic.
I did run this all by my GP who has a great nose for woo stuff, and she said she sided with me on elimination being more effective at determining if there is a food thing, and if so what might be to blame. But she still deferred to the allergy guys since this is their thing, and not hers.
I'm happy to get a second allergist's opinion at this point, but am I likely to get any other answer or just more of the same?
posted by jph at 1:09 PM on November 26, 2012
I did run this all by my GP who has a great nose for woo stuff, and she said she sided with me on elimination being more effective at determining if there is a food thing, and if so what might be to blame. But she still deferred to the allergy guys since this is their thing, and not hers.
I'm happy to get a second allergist's opinion at this point, but am I likely to get any other answer or just more of the same?
posted by jph at 1:09 PM on November 26, 2012
Do not fuck around with swollen lips and a compromised airway. No more allergy shots, and get a second opinion STAT. The next time you feel your throat swelling, regardless of whether you feel actual respiratory distress, go to the ER immediately. Keep that epi-pen within reach in the meantime.
Airway compromise is no joke. Take this seriously.
posted by jesourie at 1:10 PM on November 26, 2012 [12 favorites]
Airway compromise is no joke. Take this seriously.
posted by jesourie at 1:10 PM on November 26, 2012 [12 favorites]
You ate some hot fries or something like that didn't you? My coworker once had that happen when we were working very late one evening. He ate some Andy Capp's Hot Fries and within an hour his lips were swollen to epic proportions.
His wife, who is a doctor, told him to ice them down and sent him to the pharmacy to get some Benadryl, which knocked down the swelling pretty quickly. Everything was back to normal the next day, but he wasn't taking allergy shots that could be exacerbating the problem. Interestingly, it wasn't a reaction he'd ever had from them before, and he's not exactly young, so you'd think it would have happened at some point before in his life, but no.
posted by wierdo at 1:11 PM on November 26, 2012
His wife, who is a doctor, told him to ice them down and sent him to the pharmacy to get some Benadryl, which knocked down the swelling pretty quickly. Everything was back to normal the next day, but he wasn't taking allergy shots that could be exacerbating the problem. Interestingly, it wasn't a reaction he'd ever had from them before, and he's not exactly young, so you'd think it would have happened at some point before in his life, but no.
posted by wierdo at 1:11 PM on November 26, 2012
Yeah, you can go from 'ha-ha funny lips' to 'help me i can't breathe' in minutes. My nephew has a peanut allergy and it is scary.
posted by empath at 1:11 PM on November 26, 2012
posted by empath at 1:11 PM on November 26, 2012
Stop the allergy shots and get a second opinion from a doctor who is not dismissive of your concerns. Throat swelling could very easily turn into a life-threatening condition. Do not fuck around with it.
Anecdotal: my brother had lip swelling from a food allergy. We took him to the ER, and even though he did not have throat swelling at the time, they treated it like the potentially serious emergency that it was and filled him full of antihistamines. It turned out to be severe allergies to a bunch of foods (that are all comorbid with latex allergy, which he also has). Allergies can come on suddenly, but that this has only started happening since you began the allergy shots tells me that you should stop those first, and visit another allergist who will take your issue seriously.
posted by bedhead at 1:13 PM on November 26, 2012
Anecdotal: my brother had lip swelling from a food allergy. We took him to the ER, and even though he did not have throat swelling at the time, they treated it like the potentially serious emergency that it was and filled him full of antihistamines. It turned out to be severe allergies to a bunch of foods (that are all comorbid with latex allergy, which he also has). Allergies can come on suddenly, but that this has only started happening since you began the allergy shots tells me that you should stop those first, and visit another allergist who will take your issue seriously.
posted by bedhead at 1:13 PM on November 26, 2012
Yup. Dump that doc STAT!
posted by michellenoel at 1:16 PM on November 26, 2012 [1 favorite]
posted by michellenoel at 1:16 PM on November 26, 2012 [1 favorite]
FWIW, if you are indeed allergic to latex, there is a whole list of foods that can also cause a reaction in latex-sensitive people: apple, avocado, banana, carrot, celery, chestnut, kiwi, melons, papaya, raw potato and tomato. If you're allergic to latex, ask your GP and your new allergist about eliminating those foods.
posted by bedhead at 1:16 PM on November 26, 2012 [1 favorite]
posted by bedhead at 1:16 PM on November 26, 2012 [1 favorite]
It strikes me that if you didn't ever get this before getting the allergy shots, and if the swelling happens shortly after receiving each of the shots, that....it's the shots that are the problem.
posted by EmpressCallipygos at 1:20 PM on November 26, 2012 [3 favorites]
posted by EmpressCallipygos at 1:20 PM on November 26, 2012 [3 favorites]
Reactions like this can get worse each time, or jump in severity from your so-called "party trick" to life-threatening in a few short minutes.
After those few short minutes without oxygen, you can have serious and irreversible brain damage. I'd highly encourage you to take more photos if possible, and get thee to a better specialist ASAP.
In the meantime, keep your epi-pen in your pants pocket. Show everyone around you how to use it. Get a few extras and keep them in your backpack and car. Put on a medi-alert bracelet tomorrow. This isn't a party trick, OK?
posted by barnone at 1:25 PM on November 26, 2012 [1 favorite]
After those few short minutes without oxygen, you can have serious and irreversible brain damage. I'd highly encourage you to take more photos if possible, and get thee to a better specialist ASAP.
In the meantime, keep your epi-pen in your pants pocket. Show everyone around you how to use it. Get a few extras and keep them in your backpack and car. Put on a medi-alert bracelet tomorrow. This isn't a party trick, OK?
posted by barnone at 1:25 PM on November 26, 2012 [1 favorite]
Best answer: The mysterious "enzyme deficiency" your allergist is talking about is probably C1 inhibitor deficiency.
posted by The Elusive Architeuthis at 1:29 PM on November 26, 2012 [4 favorites]
posted by The Elusive Architeuthis at 1:29 PM on November 26, 2012 [4 favorites]
please start carrying an EPI-pen!
posted by Neekee at 1:37 PM on November 26, 2012 [2 favorites]
posted by Neekee at 1:37 PM on November 26, 2012 [2 favorites]
Specialists can be a PITA about taking enough time to answer your questions. Unfortunately it's luck of the draw, and none of us can tell you if you will get the same treatment at your second opinion, should you choose to get one. But if your insurance is paying most of the visit, there is no reason not to get a second opinion, and if so, I would make it clear up-front that you are now seeing this doctor instead of your old one because your old one didn't take time to answer questions. If you do this, you are more likely to get someone who will talk to you for more than five minutes (for which they bill around $200, or at least my specialists do).
posted by thelastcamel at 1:53 PM on November 26, 2012
posted by thelastcamel at 1:53 PM on November 26, 2012
"And finally, a food journal? Really? I'm no man of science, but that strikes me as a wholly unhelpful method of actually figuring out what is going on. Am I not better off going on an elimination diet and slowly introducing foods back in to see if I react? A food journal just strikes me as yet another scattershot approach which may or may not yield useful data. If food journaling is the way to go, is there a way to do this that I'll actually follow through on and which will possibly yield helpful information? "
Everything else aside, yeah really. A lot of the magic happens by forcing you to pay deliberate attention to what you're eating and when, but the more detailed, more complete, and more neat it is the more it will do for you.
posted by Blasdelb at 1:55 PM on November 26, 2012 [4 favorites]
Everything else aside, yeah really. A lot of the magic happens by forcing you to pay deliberate attention to what you're eating and when, but the more detailed, more complete, and more neat it is the more it will do for you.
posted by Blasdelb at 1:55 PM on November 26, 2012 [4 favorites]
Food journals are a VERY GOOD THING! It's amazing how certain foods, or combinations of food + breathe-in allergens can sneak up on you.
posted by Neekee at 2:06 PM on November 26, 2012 [2 favorites]
posted by Neekee at 2:06 PM on November 26, 2012 [2 favorites]
Response by poster: Some misconceptions in the answers that I just wanted to clarify a few things.
First, I know this is serious. Promise. I know that these reactions can be life-threatening. I have multiple epi pens, and carry one with me at all times. I have NEVER had respiratory distress from this, though I have had slight throat swelling. I specifically asked the nurses under which circumstances I should be using the epi pen, and they said only if I have respiratory distress.
The swelling has NEVER occurred within any window of time that could be considered directly related to getting the shots. Usually it occurs weeks later. It is just that these shots are the only major thing that I've changed in the last year related to how I treat my allergies. No new antihistamines, no new anything else. Just these shots. (I did once turn bright red and have head-to-toe hives immediately after getting one of these shots, but that was a long time ago and that's never happened again, even as they've tapered up my dosage. And no lip/throat swelling was present during that reaction.)
The swelling happens pretty randomly, and the closest I've coming to identifying a food that might be related to it is that grapes and grape products *might* have been ingested during the 12 hours before a reaction. But then again, when this happened to me when I was traveling abroad, I couldn't identify any grapes or grape products that I'd ingested in the preceding days.
Okay, so if I'm doing a food journal, how do I even do that?
posted by jph at 2:19 PM on November 26, 2012
First, I know this is serious. Promise. I know that these reactions can be life-threatening. I have multiple epi pens, and carry one with me at all times. I have NEVER had respiratory distress from this, though I have had slight throat swelling. I specifically asked the nurses under which circumstances I should be using the epi pen, and they said only if I have respiratory distress.
The swelling has NEVER occurred within any window of time that could be considered directly related to getting the shots. Usually it occurs weeks later. It is just that these shots are the only major thing that I've changed in the last year related to how I treat my allergies. No new antihistamines, no new anything else. Just these shots. (I did once turn bright red and have head-to-toe hives immediately after getting one of these shots, but that was a long time ago and that's never happened again, even as they've tapered up my dosage. And no lip/throat swelling was present during that reaction.)
The swelling happens pretty randomly, and the closest I've coming to identifying a food that might be related to it is that grapes and grape products *might* have been ingested during the 12 hours before a reaction. But then again, when this happened to me when I was traveling abroad, I couldn't identify any grapes or grape products that I'd ingested in the preceding days.
Okay, so if I'm doing a food journal, how do I even do that?
posted by jph at 2:19 PM on November 26, 2012
Best answer: I'm no man of science, but that strikes me as a wholly unhelpful method of actually figuring out what is going on.
Well I'm a women of science, including a PhD in a relevant related area, and I was coming in here to tell you that the very first thing you should be doing is a food and symptom journal. It really is the most powerful way of tracking down if this is a food allergy or not, and can be done while also working on other ways of sorting out the problem. Whereas an elimination diet isn't something you can do properly by yourself despite what the internet tries to tell you, needs to be done in conjunction with someone properly trained (generally a dietician but, in this case, maybe an allergist) and is going to involve keeping a food diary anyway. So you might as well start now.
Make it as absolutely detailed as you can because this could be caused by anything, down to a food additive or spice (or not food at all), and keep in mind that oral allergies happen quick so keep track as you go (rather than be put in the situation of remembering what happened after you get sick).
Food allergies cross reacting isn't woo at all and is totally accepted immunology. There are groups which commonly cross react such as latex allergies crossing with certain tropical fruits, or birch pollen cross reacting also with fruit (some the same, some different). It's common to start off allergic to one and end up allergic to all the others (or to totally random other things too) and I can totally imagine something like an allergy shot setting this off. I don't really get why you're sceptical of this since a quick check of something like wikipedia should back it up, so I'm guessing your doctor did a really bad job of explaining things.
As for the enzyme deficiency, I have no idea. You should ring the surgery back and ask exactly what they are testing you for then we'd have a better idea. (On preview, a protease inhibitor deficiency makes scientific sense, so find out the proper term because it could be made up rubbish or it could be something reasonable and fixable)
Your age is irrelevant by the way, this kind of problem absolutely does pop up as you age (sometimes they go away for the same reason). You absolutely need to positively identify what is causing this because it's very dangerous, plus looks very un-fun, and that's what keeping careful notes and doing appropriate tests is for.
I do think that the communication here is so bad that you it would make total sense for you to get a second opinion, because your symptoms are really serious and you deserve to have a better idea of what is going on (even if it's just a test name written down so you can google it later). That detailed food and symptom diary is going to be super helpful when you change doctors too by the way.
posted by shelleycat at 2:20 PM on November 26, 2012 [8 favorites]
Well I'm a women of science, including a PhD in a relevant related area, and I was coming in here to tell you that the very first thing you should be doing is a food and symptom journal. It really is the most powerful way of tracking down if this is a food allergy or not, and can be done while also working on other ways of sorting out the problem. Whereas an elimination diet isn't something you can do properly by yourself despite what the internet tries to tell you, needs to be done in conjunction with someone properly trained (generally a dietician but, in this case, maybe an allergist) and is going to involve keeping a food diary anyway. So you might as well start now.
Make it as absolutely detailed as you can because this could be caused by anything, down to a food additive or spice (or not food at all), and keep in mind that oral allergies happen quick so keep track as you go (rather than be put in the situation of remembering what happened after you get sick).
Food allergies cross reacting isn't woo at all and is totally accepted immunology. There are groups which commonly cross react such as latex allergies crossing with certain tropical fruits, or birch pollen cross reacting also with fruit (some the same, some different). It's common to start off allergic to one and end up allergic to all the others (or to totally random other things too) and I can totally imagine something like an allergy shot setting this off. I don't really get why you're sceptical of this since a quick check of something like wikipedia should back it up, so I'm guessing your doctor did a really bad job of explaining things.
As for the enzyme deficiency, I have no idea. You should ring the surgery back and ask exactly what they are testing you for then we'd have a better idea. (On preview, a protease inhibitor deficiency makes scientific sense, so find out the proper term because it could be made up rubbish or it could be something reasonable and fixable)
Your age is irrelevant by the way, this kind of problem absolutely does pop up as you age (sometimes they go away for the same reason). You absolutely need to positively identify what is causing this because it's very dangerous, plus looks very un-fun, and that's what keeping careful notes and doing appropriate tests is for.
I do think that the communication here is so bad that you it would make total sense for you to get a second opinion, because your symptoms are really serious and you deserve to have a better idea of what is going on (even if it's just a test name written down so you can google it later). That detailed food and symptom diary is going to be super helpful when you change doctors too by the way.
posted by shelleycat at 2:20 PM on November 26, 2012 [8 favorites]
Best answer: Okay, so if I'm doing a food journal, how do I even do that?
Details, lots of boring details, everything you eat, anything extra that may be in there, written as you go rather than remembered later on. Track your symptoms too (anything allergy related), and anything else that might be relevant (medications you take for example). Talk with whoever you're working with about what they want to see in there, if they're trained to identify food allergies they should have ideas about the best way to go about this and about what kinds of things may be particularly relevant to track (e.g. which foods are more likely culprits etc)
Having a reaction specifically on your mouth is generally an oral allergy so it does make sense as a first place to look. But it might not be of course, so maybe keep track of anything else weird you're exposed to also. For example, my mouth swelled up to about 2/3 of your photo once when I was burning incense and general perfume allergies hit me more in the throat and mouth than in my nose, so I'd be tracking things like that too.
posted by shelleycat at 2:24 PM on November 26, 2012 [1 favorite]
Details, lots of boring details, everything you eat, anything extra that may be in there, written as you go rather than remembered later on. Track your symptoms too (anything allergy related), and anything else that might be relevant (medications you take for example). Talk with whoever you're working with about what they want to see in there, if they're trained to identify food allergies they should have ideas about the best way to go about this and about what kinds of things may be particularly relevant to track (e.g. which foods are more likely culprits etc)
Having a reaction specifically on your mouth is generally an oral allergy so it does make sense as a first place to look. But it might not be of course, so maybe keep track of anything else weird you're exposed to also. For example, my mouth swelled up to about 2/3 of your photo once when I was burning incense and general perfume allergies hit me more in the throat and mouth than in my nose, so I'd be tracking things like that too.
posted by shelleycat at 2:24 PM on November 26, 2012 [1 favorite]
Response by poster: Thank you shelleycat, you are today's Voice of Reason on The Internet.
posted by jph at 2:32 PM on November 26, 2012
posted by jph at 2:32 PM on November 26, 2012
I had this happen repeatedly as part of chronic urticaria (hives). I took Zyrtec and Tagamet regularly and Benadryl at the first signs of tingling and that seemed to help. It lasted 6 months or so. The doctors and allergist said it was an autoimmune reaction that wasn't necessarily caused by anything.
posted by valeries at 2:34 PM on November 26, 2012 [1 favorite]
posted by valeries at 2:34 PM on November 26, 2012 [1 favorite]
The benefit of a food diary is it doesn't stop you doing anything else, and it makes you feel like you're being useful while you wait for the doctors to sort their shit out (because you are!). I agree that you're now searching for a solution to a problem that has been created somehow, but it's actually kind of irrelevant because you *have* the problem, might as well try to fix it.
I hope you get a more communicative doctor and this goes away as quickly as it showed it.
posted by shelleycat at 2:41 PM on November 26, 2012
I hope you get a more communicative doctor and this goes away as quickly as it showed it.
posted by shelleycat at 2:41 PM on November 26, 2012
I'm not your doctor, but I am a doctor, and I noticed you didn't mark as best answers the ones which are most on the money here, so I wanted to reiterate instead of just favoriting them.
Angioedema. C1 esterase deficiency. I tried to find slightly less technical jargon-loaded pages about them. Do a Google image search of angioedema, or angioedema lips, and you will see photos exactly like your own.
As far as management they're usually treated pretty much similarly to a severe allergic reaction (anaphylaxis), i.e. Benadryl, steroids, Epi-pen if needed.
I'm assuming you don't take an ACE inhibitor medication for blood pressure (lisinopril, enalapril, etc), that is the other most common cause of this problem but I'm sure your allergist would have picked up on it.
posted by treehorn+bunny at 2:43 PM on November 26, 2012 [5 favorites]
Angioedema. C1 esterase deficiency. I tried to find slightly less technical jargon-loaded pages about them. Do a Google image search of angioedema, or angioedema lips, and you will see photos exactly like your own.
As far as management they're usually treated pretty much similarly to a severe allergic reaction (anaphylaxis), i.e. Benadryl, steroids, Epi-pen if needed.
I'm assuming you don't take an ACE inhibitor medication for blood pressure (lisinopril, enalapril, etc), that is the other most common cause of this problem but I'm sure your allergist would have picked up on it.
posted by treehorn+bunny at 2:43 PM on November 26, 2012 [5 favorites]
Response by poster: Thanks treehorn+bunny. You're right. And the doctor did say those words. (I think angioedema was even a tag I used.) But I still don't really understand what those things are. I just got the feeling that they might be the allergy equivalent of the "oh it's something autoimmune" brush-off.
What I have from shelleycat and others is that I'm not getting brushed off and that this is actually A Medical Thing. That's a relief, although I made an appointment with another practitioner at another clinic and I am going to keep that one. Perhaps this one will have a better way to explain what we are doing and why.
posted by jph at 3:10 PM on November 26, 2012
What I have from shelleycat and others is that I'm not getting brushed off and that this is actually A Medical Thing. That's a relief, although I made an appointment with another practitioner at another clinic and I am going to keep that one. Perhaps this one will have a better way to explain what we are doing and why.
posted by jph at 3:10 PM on November 26, 2012
Seconded, my most successful food diary attempts have been when I photograph everything that goes into my mouth and then write down the details.
posted by ocherdraco at 3:45 PM on November 26, 2012
posted by ocherdraco at 3:45 PM on November 26, 2012
And when noting what you ingest, include vitamins. I once turned red from head to foot after taking just one pill from a new bottle of Vitamin D. GP and then pharmacist told me it is common to be allergic to the excipient in some of the cheaper brands of vitamins. Good luck!
posted by uans at 3:55 PM on November 26, 2012 [1 favorite]
posted by uans at 3:55 PM on November 26, 2012 [1 favorite]
In terms of your age and autoimmune-related conditions, I developed asthma for the first time at 31.
posted by KokuRyu at 3:57 PM on November 26, 2012
posted by KokuRyu at 3:57 PM on November 26, 2012
1) First off, what's the deal with this "enzyme deficiency?
Enzymes are catalysts for chemical reactions. Because they're very large, they're also very specific. I'm no biochemist, but I'm guessing your doctor thinks there's an enzyme to break down something isn't present in your blood stream. Usually this is a genetic deficiency, either in the regions that encode the enzyme or the regions that promote it's transcription. So shots or pills will be used to augment whatever natural supply of that enzyme you have. This makes sense, despite your claims of tautology: if you're missing something to be healthy, replacing it will make you healthy. The blood test will screen for presence (and absence) a bunch of chemicals and enzymes of interest.
There's other possible causes; perhaps some combination of food, allergens and other medicine you're taking is reacting to form a larger, nonsoluable chemical, which precipitates out whenever you drink something cold. I'm sure an experienced doctor could come up with more causes than my Linux sysadmin ass could. Angioedema could be the problem*, but doesn't explain recent onset. Still possible though. The human body is a pretty big thing genetically, with lots of interacting components. Not everything is working 100 percent okay / broken; sometimes it's just slightly deficient, some of the time.
4) And finally, a food journal? Really?
It's certainly a valid approach. Yes, any given incident will have a lot of possible causes. But if your diet varies, each incident/non-incident should rule out a large chunk of proximate causes. Diaries are as close to an apache log for the human body as we can get. An elimination diet might be safer, but will take longer to find a cause and begin treatment. And what if it's a common combination of things (lima beans and acidic drinks like lemonade)? Anyways, it's a false choice; a food diary doesn't preclude other treatments.
Finally, if you don't like the treatment you're getting, a second opinion is worthwhile. Especially if compliance with doctor's directions is at stake. Specialists make good money, make them earn it.
*Technically, C-1 inhibitor isn't an enzyme. It binds pretty much permanently. But it's possible the doctor doesn't understand that =/
posted by pwnguin at 3:57 PM on November 26, 2012
Enzymes are catalysts for chemical reactions. Because they're very large, they're also very specific. I'm no biochemist, but I'm guessing your doctor thinks there's an enzyme to break down something isn't present in your blood stream. Usually this is a genetic deficiency, either in the regions that encode the enzyme or the regions that promote it's transcription. So shots or pills will be used to augment whatever natural supply of that enzyme you have. This makes sense, despite your claims of tautology: if you're missing something to be healthy, replacing it will make you healthy. The blood test will screen for presence (and absence) a bunch of chemicals and enzymes of interest.
There's other possible causes; perhaps some combination of food, allergens and other medicine you're taking is reacting to form a larger, nonsoluable chemical, which precipitates out whenever you drink something cold. I'm sure an experienced doctor could come up with more causes than my Linux sysadmin ass could. Angioedema could be the problem*, but doesn't explain recent onset. Still possible though. The human body is a pretty big thing genetically, with lots of interacting components. Not everything is working 100 percent okay / broken; sometimes it's just slightly deficient, some of the time.
4) And finally, a food journal? Really?
It's certainly a valid approach. Yes, any given incident will have a lot of possible causes. But if your diet varies, each incident/non-incident should rule out a large chunk of proximate causes. Diaries are as close to an apache log for the human body as we can get. An elimination diet might be safer, but will take longer to find a cause and begin treatment. And what if it's a common combination of things (lima beans and acidic drinks like lemonade)? Anyways, it's a false choice; a food diary doesn't preclude other treatments.
Finally, if you don't like the treatment you're getting, a second opinion is worthwhile. Especially if compliance with doctor's directions is at stake. Specialists make good money, make them earn it.
*Technically, C-1 inhibitor isn't an enzyme. It binds pretty much permanently. But it's possible the doctor doesn't understand that =/
posted by pwnguin at 3:57 PM on November 26, 2012
Certainly, get a second opinion if you just don't click well with your current doc. But you do want to be seeing an allergist.
Echoing treehorn+bunny...while I don't know what the tone of the interaction was, it doesn't sound like your guy was blowing you off. You obviously have a real problem. Get the blood test...any future practioner will want those results. And keep the food diary...as suggested above, I'd expand this to more of an ingestion diary. include vitamins, supplements, etc. Just use a cheap notebook...list your intake that day, and any symptoms.
Point of interest: what allergies prompted you to start getting allergy shots at this practice?
posted by maryrussell at 4:02 PM on November 26, 2012
Echoing treehorn+bunny...while I don't know what the tone of the interaction was, it doesn't sound like your guy was blowing you off. You obviously have a real problem. Get the blood test...any future practioner will want those results. And keep the food diary...as suggested above, I'd expand this to more of an ingestion diary. include vitamins, supplements, etc. Just use a cheap notebook...list your intake that day, and any symptoms.
Point of interest: what allergies prompted you to start getting allergy shots at this practice?
posted by maryrussell at 4:02 PM on November 26, 2012
I had a similar problem, and after months of off and on facial swelling (lips, eyes, etc.), I discovered that I had just become allergic to ibuprofen. So, write down everything, not just food.
posted by instamatic at 4:20 PM on November 26, 2012
posted by instamatic at 4:20 PM on November 26, 2012
I can't add much to this thread except to say that if you go the food diary route, write down everything *before* you take the first bite, otherwise you risk forgetting afterwards.
posted by radioamy at 4:46 PM on November 26, 2012
posted by radioamy at 4:46 PM on November 26, 2012
Best answer: For journaling, there are a ton of smartphone apps that are primarily for tracking calories that would work for you. Popular ones that are available on android and iOS AND have a web interface are LoseIt, MyFitnessPal, and MyNetDiary.
(I do like the idea of photographing everything though, especially if you aren't interested in other metrics.)
posted by homodachi at 5:14 PM on November 26, 2012
(I do like the idea of photographing everything though, especially if you aren't interested in other metrics.)
posted by homodachi at 5:14 PM on November 26, 2012
Response by poster: maryrussell, the original quest was to figure out if I was allergic to wheat or not. And it suddenly occurs to me that I actually *did* have this reaction only once before: years ago, after eating a bunch of pizza, my lips were a little swollen and that tipped me off to the fact that maybe my weirdo symptoms (which had previously been brushed off as "autoimmune," which perhaps contributes to my paranoia about being brushed off) were related to an allergy. I tried a wheat-free diet for a while and they all cleared up. Later another GP agreed with my hunch that allergies might be in play, and we agreed that self-diagnosis and hunches were insufficient for moving forward, and so she sent me off to this guy to get the scratch test done and it revealed plenty of environmental things that he wanted to get under control. He suggested that the food thing could be a red herring anyway, and cautioned against eliminating anything from my diet until we'd gotten the environmental things under control. So now I'm back to eating everything sans weirdo "autoimmune" symptoms but with new weirdo lip swelling stuff.
Thanks homodachi! I think something like that might be best for me, since I can't/won't carry a physical journal with me everywhere, but *will* always have my phone with me.
posted by jph at 5:20 PM on November 26, 2012
Thanks homodachi! I think something like that might be best for me, since I can't/won't carry a physical journal with me everywhere, but *will* always have my phone with me.
posted by jph at 5:20 PM on November 26, 2012
If you don't mind wading through Reddit, here's a recent thread on angioedema.
posted by roger ackroyd at 5:39 PM on November 26, 2012
posted by roger ackroyd at 5:39 PM on November 26, 2012
I think this is an auto-immune reaction, as valeries suggests.
However, I also think it's a side effect of the allergy shots too, as empath suggests, and that you should follow his advice to stop the shots.
Allergy shots work in part by switching your immune response to whatever you might be allergic to from mediation by one kind of immunoglobulin (IgE), which is associated with allergies, to another kind of immunoglobulin (IgG), which is not associated with allergies:
Such an antibody-- one that binds to the binding site of another antibody-- is known as an anti-idiotype antibody and essentially imitates the original antigen (the thing you are allergic to and getting the shot for) and as such, functions to amplify the immune response to that original antigen, and in your case might bind to the IgE antibody sitting on the mast cells and the basophils and cause those cells to react as they would to the allergen.
In short, I think your allergy shots may have induced a second IgG antibody-- an autoantibody-- which is amplifying your allergy rather than muting it.
posted by jamjam at 6:28 PM on November 26, 2012 [2 favorites]
However, I also think it's a side effect of the allergy shots too, as empath suggests, and that you should follow his advice to stop the shots.
Allergy shots work in part by switching your immune response to whatever you might be allergic to from mediation by one kind of immunoglobulin (IgE), which is associated with allergies, to another kind of immunoglobulin (IgG), which is not associated with allergies:
The immune system of allergy affected individuals, for reasons not fully understood, misinterprets a usually innocuous substance as a disease agent and begins producing a type of antibody against it, called immunoglobulin E (IgE). This is called the 'primary antibody response.' The IgE produced during this response binds to basophils in the bloodstream and to a similar type of cell called mast cells in the tissues. When the person again encounters the allergen, it binds to the IgE that has already attached to basophils and mast cells, causing release of histamine, prostaglandins, and leukotrienes, producing inflammation of the surrounding tissues, and bringing about the familiar allergic symptoms.But on occasion, IgG immunoglobulin can itself activate the mast cells and basophils:
...
part of the therapeutic mechanism relies on the preferential induction of allergen-specific IgG to neutralize the allergen in place of allergen-specific IgE.
The immune system normally protects us by making antibodies against foreign invaders such as bacteria and viruses. These antibodies are called IgG and are often referred to as gammaglobulins. Usually, IgG is not formed to any normal body tissue but occasionally, by error, this does happen. If antibody binds to normal tissues it can cause damage to the body or create other disease symptoms. Rheumatoid arthritis is a good example of an autoimmune disease. Antibodies that react with body tissues are felt to contribute to joint swelling and pain. Many other common diseases are caused by autoimmunity such as juvenile diabetes and low thyroid disease.In your case, I'd guess that the allergy shots induced not only an IgG antibody to the thing you're allergic to (the allergen) but also another IgG antibody that binds to the active region of the first IgG antibody and the IgE antibody that also binds to the allergen.
It has been recently discovered that some persons who suffer with hives or angioedema also have an autoimmune disease. In these cases, autoantibodies have been formed that bind to the Fc-receptor on mast cells. The normal function of the Fc-receptor is to anchor allergic antibodies, called IgE, to the mast cell surface (see the mast cell diagram below). IgE is formed in allergic persons and binds specifically to allergens in the environment. When airborne allergens land on nasal tissues or eye conjunctiva, or are eaten (foods) and enter the body through the intestinal tract they bind to the specific IgE. As a result of this interaction, a signal is sent by the IgE antibody to the mast cell causing it to release its histamine. Histamine release causes the nasal and eye symptoms seen in those who suffer with "hay fever" and can produce hives, angioedema, or even life-threatening symptoms such as respiratory compromise or low blood pressure.
In persons with autoimmune hives, the IgG autoantibody that binds to the Fc-receptor tricks the mast cell into believing that the IgE on its surface has encountered an allergen. When this happens, hives or tissue swelling can result. (The diagram above shows a Mast cell with purple histamine granules. The "patient IgG" is the autoantibody that binds to the Fc-receptor.)
Such an antibody-- one that binds to the binding site of another antibody-- is known as an anti-idiotype antibody and essentially imitates the original antigen (the thing you are allergic to and getting the shot for) and as such, functions to amplify the immune response to that original antigen, and in your case might bind to the IgE antibody sitting on the mast cells and the basophils and cause those cells to react as they would to the allergen.
In short, I think your allergy shots may have induced a second IgG antibody-- an autoantibody-- which is amplifying your allergy rather than muting it.
posted by jamjam at 6:28 PM on November 26, 2012 [2 favorites]
Am I not better off going on an elimination diet and slowly introducing foods back in to see if I react? ...If food journaling is the way to go, is there a way to do this that I'll actually follow through on
You'd need to keep a food journal if you went the elimination route all the same, think of it as a lab notebook and take your lab notes on everything you put into your mouth.
posted by yohko at 6:59 PM on November 26, 2012
You'd need to keep a food journal if you went the elimination route all the same, think of it as a lab notebook and take your lab notes on everything you put into your mouth.
posted by yohko at 6:59 PM on November 26, 2012
You keep saying "brushed off as autoimmune", but a doctor stating something is an autoimmune reaction is not necessarily a brush-off. I mean, it's a real thing. And sometimes there's not a Cause with a capital C as unsatisfying as that may be. Not saying you shouldn't keep pursuing this, but please don't minimize a whole category of illnesses / diseases (that many people here suffer from) because you've somehow associated them with your doctor's disinterest.
posted by valeries at 7:08 PM on November 26, 2012 [1 favorite]
posted by valeries at 7:08 PM on November 26, 2012 [1 favorite]
My grandad gets what some doctor decided to call "chronic idiopathic urticaria", where his lips and sometimes throat and tongue swell. The only thing is that it doesn't really look like the pictures of urticaria. He's never found a pattern. It seems to happen more often in the US than at home in England, but that's it. He's got some tablets (some kind of steroid I think) that can stop the swelling if he takes them at the right moment (and an epi-pen that I don't think he's ever used--he did walk to A&E in the middle of the night as he was having trouble breathing once, pre-epi-pen, but the A&E closed, so I think he's become more cautious since time sensitive emergencies are much more likely to be fatal now). This is not very helpful, but your description sounded awfully familiar and someone's already mentioned urticaria, so perhaps not-quite-urticaria is a useful data point.
posted by hoyland at 7:47 PM on November 26, 2012
posted by hoyland at 7:47 PM on November 26, 2012
FWIW, this is how I react when I take aspirin or ibuprofen. I took each of them exactly once in my early teens and have been a tylenol-only lady ever since. Just in case you are focusing on foods but maybe also bought a new brand of painkillers...figured I would mention it.
posted by town of cats at 10:30 PM on November 26, 2012
posted by town of cats at 10:30 PM on November 26, 2012
> This started only after I began allergy shot treatments
Is it needless to say that step one is to stop getting allergy shots? Keep going to an allergist, but uh, I'd start with the totally obvious-seeming trigger first.
posted by desuetude at 11:50 PM on November 26, 2012
Is it needless to say that step one is to stop getting allergy shots? Keep going to an allergist, but uh, I'd start with the totally obvious-seeming trigger first.
posted by desuetude at 11:50 PM on November 26, 2012
I had to do an elimination diet last year after the left side of my face randomly swelled up. I'd had problems with my tongue swelling up for years, but the first immunologist couldn't find a reason for it and the swelling wasn't impacting on my breathing so I didn't worry about it. I had to keep a food journal as well, then after I'd been symptom-free for a few weeks I was able to do tests for different potential triggers. It turned out I have in intolerance to salicylates, which is a naturally occurring chemical that's in a lot of foods. It's also what asprin is made of. Apparently they gradually build up in your body so the last thing you ate may not necessarily be the trigger.
posted by Kris10_b at 2:59 AM on November 27, 2012 [1 favorite]
posted by Kris10_b at 2:59 AM on November 27, 2012 [1 favorite]
Just came here to say you should also report this doctor to both your state licensing board(s) and as many consumer doctor rating sites as you can find. This dude sounds like a dangerous asshole.
posted by pjaust at 5:20 AM on November 27, 2012
posted by pjaust at 5:20 AM on November 27, 2012
And the doctor did say those words. (I think angioedema was even a tag I used.) But I still don't really understand what those things are. I just got the feeling that they might be the allergy equivalent of the "oh it's something autoimmune" brush-off.
Just in case it's not clear by this point, angioedema is the medical term for your swollen lips. "Angio" refers to blood vessels and lymphatic vessels (and in this word it specifically means the vessels under the skin of your face and lips), and "Edema" is swelling. Angio+Edema = lip tissue+swelling.
It's not meant as an explanation of your symptoms, the way "something autoimmune" seemed like a half-assed theory about what might be causing the problem. It's not "I think your swollen lips are caused by angioedema." It's "Your swollen lips are also known as angioedema."
And FWIW, I think the appropriate next utterance from the doctor should be "That can rapidly become life-threatening, let's stop the allergy shots and find out what's causing it." But IANAD, so there's that.
posted by vytae at 10:08 AM on November 27, 2012
Just in case it's not clear by this point, angioedema is the medical term for your swollen lips. "Angio" refers to blood vessels and lymphatic vessels (and in this word it specifically means the vessels under the skin of your face and lips), and "Edema" is swelling. Angio+Edema = lip tissue+swelling.
It's not meant as an explanation of your symptoms, the way "something autoimmune" seemed like a half-assed theory about what might be causing the problem. It's not "I think your swollen lips are caused by angioedema." It's "Your swollen lips are also known as angioedema."
And FWIW, I think the appropriate next utterance from the doctor should be "That can rapidly become life-threatening, let's stop the allergy shots and find out what's causing it." But IANAD, so there's that.
posted by vytae at 10:08 AM on November 27, 2012
Response by poster: Got the second opinion, and had the blood drawn for the C1/4 deficiency. I'm not sure that I was told anything more helpful in this appointment. Here are the highlights for everyone playing along at home:
- Cross-reactive food allergy: This doctor doesn't believe it exists. More accurately, he just said "That's not how allergies work." He also said he doesn't do food allergy testing because it is so useless. So I'm going to continue keeping the food journal just for funsies at this point.
- He also said that allergy shots don't cause reactions like this. If they're going to cause a reaction, then it will be immediately after the shot is administered, not weeks later. So he suggested continuing with the allergy shots and keeping an epi pen handy in case this happens again.
- He said that this sort of thing happens to about 25% of the population at some time in their life, and that 90% of the time, it is temporary. He also said that 90% of the time, they never figure out what is causing it. His recommendation was to take a daily Allegra. And if it continues, then we'll up the dose until it stops and eventually we will try to taper off the dose and hopefully by then it will have burned itself out and I'll not have to deal with this anymore. I'm hesitant to take *any* medication every day, but he assures me that daily antihistamines are not dangerous, and they're preferable to the alternative, which is steroids. Fine. At least I have a path forward.
- He also said that I should use the epi pen and call 911 any time I have throat swelling, even if it isn't accompanied by respiratory distress. I'm not thrilled about that, but I suppose if the alternative is being dead, I'll take it. I am just hoping that a daily antihistamine means this wont be happening any more and it will be a moot point.
I suppose I will know more when I find out about the C1/4 deficiency test. Or not. *shrug*
posted by jph at 2:37 PM on November 28, 2012 [1 favorite]
- Cross-reactive food allergy: This doctor doesn't believe it exists. More accurately, he just said "That's not how allergies work." He also said he doesn't do food allergy testing because it is so useless. So I'm going to continue keeping the food journal just for funsies at this point.
- He also said that allergy shots don't cause reactions like this. If they're going to cause a reaction, then it will be immediately after the shot is administered, not weeks later. So he suggested continuing with the allergy shots and keeping an epi pen handy in case this happens again.
- He said that this sort of thing happens to about 25% of the population at some time in their life, and that 90% of the time, it is temporary. He also said that 90% of the time, they never figure out what is causing it. His recommendation was to take a daily Allegra. And if it continues, then we'll up the dose until it stops and eventually we will try to taper off the dose and hopefully by then it will have burned itself out and I'll not have to deal with this anymore. I'm hesitant to take *any* medication every day, but he assures me that daily antihistamines are not dangerous, and they're preferable to the alternative, which is steroids. Fine. At least I have a path forward.
- He also said that I should use the epi pen and call 911 any time I have throat swelling, even if it isn't accompanied by respiratory distress. I'm not thrilled about that, but I suppose if the alternative is being dead, I'll take it. I am just hoping that a daily antihistamine means this wont be happening any more and it will be a moot point.
I suppose I will know more when I find out about the C1/4 deficiency test. Or not. *shrug*
posted by jph at 2:37 PM on November 28, 2012 [1 favorite]
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Also, is the advising doctor in this case the same one administering the allergy shots?
posted by elizardbits at 12:55 PM on November 26, 2012 [3 favorites]