The mysterious case of the non-allergic allergies
May 5, 2016 6:29 PM   Subscribe

I have had "allergies" my entire life that seemed to culminate in a gasping cough last year, which sent me to an allergist (among other doctors), which found that I don't have allergies. All of the testing was negative. Except I frequently get bouts of what seems like severe allergies--nonstop sneezing, nonstop headaches, exhaustion, bad post-nasal drop--and nothing helps. Now it's worse than ever and I don't know what to do.

Last year I saw an allergist, a GI, an ENT, and a speech pathologist, who all ran a gauntlet of tests that were mostly negative except a few key ones, which showed LPR. I definitely have acid reflux--ph test showed backflow of liquids, I get heartburn frequently, I regurgitate my food, and my LES is loose (confirmed by manometry). My throat and tonsils are also chronically inflamed, which my ENT found, who has me taking Omeprazole and Ranitidine twice a day to manage it.

Suddenly, though, it's worse. I'm suddenly getting these awful "allergy" attacks indoors where my eyes water like crazy, my nose runs, I sneeze nonstop and basically become dysfunctional until I either remove myself from wherever I am or load up on decongestants, which doesn't get rid of it but brings it to a manageable level. Before, my throat would feel scratchy when I was tired--now, in the mornings and at night, it hurts. It woke me up one night. It generally clears up during the day but it always starts to hurt again. I'm always raspy, but now I'm a lot MORE raspy. I'm getting headaches. I constantly need to clear the gunk out of my throat, and I'm exhausted. I feel sick. I haven't been exercising because I start my day feeling pooped out. It gets better as I wake up and get moving, but it doesn't fully go away.

I've been on All of the Allergy Meds Ever for basically my whole life. They've never worked very well. It's hard to tell if they make any difference at all. My nasal passage is absolutely, constantly inflamed and nothing makes it better. I plan on starting Zyrtec again and taking it religiously. I was also thinking of asking the doctor for a prescription for Flonase.

I do have a deviated septum. My tonsils are also chronically swollen and basically look horribly diseased--they're constantly varicose and pussy and swollen, but ENT won't take them out because I'm not being bombarded by cases of strep. The doctors have basically thrown their hands up and told me to keep taking my PPIs/H2 blocker and to avoid tomatoes. Allergist insisted that allergies are impossible and this is "behavioral". GI insists that nothing is physically wrong. ENT is better--he thinks the problem is real, but only told me to take my meds and have my throat checked once a year. PCP seems baffled. I feel like, if I go back, they'll blame the LPR, maybe suggest I try a nasal spray, and then blow it off as non-allergic rhinitis if none of that works. Meanwhile, my throat really hurts and I'm very tired and I just want to feel okay. I'm working through a university medical center so these are supposed to be the experts, the good ones.

Is this 2nd opinion territory? I'm moving Far Far Away in three months and I don't want to descend into another medical rabbit hole, but I'll at least see someone if I need to. I live in Western New York, for what it's worth. My diet has not changed. YANAD/MD etc. Any ideas of what it could be (YES you are not a professional, I'll obviously run this by a doctor)? What would you do?
posted by Amy93 to Health & Fitness (27 answers total) 4 users marked this as a favorite
Have you changed cleaning products or polished your floors? I'm bizarrely allergic to a) floor polish products, b) mould that grows on certain trees and c) weirdly, too much dairy gives me congestion and ear infections. The floor products never have shown up on testing.
posted by warriorqueen at 6:42 PM on May 5, 2016

Checked for asthma? Other option could be auto immune inflormation that manifests in your sinus area.
posted by tilde at 6:42 PM on May 5, 2016 [2 favorites]

I am not a physician, but I'm a PhD biochemist and work in pharma, so biology and disease mechanism are stuff I think about. It sounds like you definitely are having an immune response, but if there are no common allergens that provoke it, perhaps it's an immune system dysfunction?
posted by Sublimity at 6:45 PM on May 5, 2016 [1 favorite]

Also, if your tonsils are really in awful shape, maybe get a second ENT opinion about taking them out.
posted by Sublimity at 6:47 PM on May 5, 2016 [3 favorites]

Definitely get a second opinion from another ENT. Your tonsils and deviated septum are torturing you, and the docs can probably check out your turbinates while they're fixing those too.
posted by vickyverky at 6:50 PM on May 5, 2016 [4 favorites]

Can you define "suddenly"worse? If your symptoms have changed/increased for a period of time less than two weeks, could you have a viral illness? Any sick contacts that you know of?
posted by little mouth at 6:56 PM on May 5, 2016

It should not be that hard to find someone to take out your tonsils/fix your septum. Definitely get another opinion on that one.

My husband has an autoimmune disease that is hard to diagnose/treat and manifests in his sinuses (though not the sneezing you mention, just constant sinus infections).

Have you ever noticed it being better anywhere/time? Like certain times of year, or certain places/types of weather? That might point you in the right direction. Allergy tests don't catch everything.
posted by emjaybee at 7:05 PM on May 5, 2016

Response by poster: By "suddenly" worse, I mean my throat actually started to hurt. Like it woke me up one night and I was concerned I was getting strep. I'm also way, way more congested than usual and I'm getting sinus headaches, which is unusual for me. It's possible I have a virus; I work with children. However, this is entirely unlike any cold I've ever had (it hasn't come to a "head", so to speak, which usually involves me blowing my nose CONSTANTLY for two days and then being fine). The general thing has been happening for years, however, and the severe "attacks" started before it got worse.

I got tested for asthma and it was negative (spirometry) and it was negative. However, I was taking four puffs a day of Flovent at the time to control the out-of-control cough, which worked. The doctor insisted this would have no effect on the test, but I was unconvinced.

It seems markedly worse in the Spring. Sometimes in the fall. It's been hard to identify a pattern.

emjaybee, can I ask what your husband had? You can memail me!
posted by Amy93 at 7:14 PM on May 5, 2016

That sounds exhausting. I'm sorry that you're suffering so much without knowing the cause.

The basics: do you smoke? is there mold where you live? do you share your home with animal companions? have you seen a registered dietician who has expertise in allergies and food sensitivities? As a non-medical professional, I say persist and yes to second opinions from other people who take your symptoms and your suffering seriously.

I really hope you find relief.
posted by simulacra at 7:44 PM on May 5, 2016

Is there any association with temperature? Because apparently being allergic to the cold is a thing.
posted by embrangled at 7:51 PM on May 5, 2016

. My throat and tonsils are also chronically inflamed, which my ENT found, who has me taking Omeprazole and Ranitidine twice a day to manage it.

I can't speak to your allergic symptoms, though I hope you find relief soon. But I would like to say that I took these drugs for years... and recently found that I wound up with premature osteoporosis, almost certainly from years of acid blockers and antacids. I have severe GERD but would have tried other treatments if I'd known. I just want women to know about this! No one told me... please ask your MD about this risk and what you might do to counteract the effects of antacid-caused calcium malabsorbtion.
posted by flourpot at 7:57 PM on May 5, 2016 [5 favorites]

In my case I have also struggled for years with high levels of inflammation, especially asthma, which I have treated with flovent at various times over the years. I too used to take allergy meds daily for years and years. There have been periods in my life when this has seemed to be 'under control', only to come roaring back in a sustained way following periods of intense stress.

I eventually began to notice connections with eating certain things and feeling worse. Out of desparation I began cutting foods. Alcohol, caffeine, sugar, wheat, soy, dairy, peanuts. It's been a major life overhaul reducing my dependence on these foods but it has actually worked; after years of chronic inflammation my asthma is not bothering me now at all, and my general level of health is way way better. No allergy meds, no inhaler.

I don't think the science is really in on the concept of the 'anti-inflammatory diet' but on the basis of my own remarkable success I would encourage you to give this a try. There are lots of examples on the web. For me diet seems to go hand in hand with other health issues; baseline levels of inflammation correlate strongly with how much junk I eat. Regardless of what the root cause of all your problems is, eating well could give your body some help.
posted by PercussivePaul at 8:32 PM on May 5, 2016 [4 favorites]

I don't think this is it since it sounds like you aren't coughing currently but just to rule another thing out - ACE Inhibitor Cough.
posted by Beti at 9:21 PM on May 5, 2016

Have you been tested for food allergies, because those sound very much like food allergies. I had similar symptoms for years that were finally (mostly) diagnosed with a RAST test. You could also try going on an elimination diet to determine if something you are eating regularly is giving you trouble. Try taking the common allergens out of your diet and see if that makes a difference to your well-being. I am allergic to eggs. Discovering this (after years of constant weepy eyes, runny nose, chronic t tummy ache and general malaise) made an incredible difference in my well-being.
posted by djinn dandy at 9:21 PM on May 5, 2016 [3 favorites]

I have acid reflux and bad allergies and I think I kind of know what you mean.

Have you tried Nasacort? I know you said all the allergy meds ever, but if you haven't tried Flonase yet, maybe you haven't tried Nasacort. It is the onlyyyy thing that works for me, and it takes a couple days to totally kick in but them I'm good all year round.

If it's silent reflux, I'd try cutting out various foods and see how that works. I've found that no matter how much Nexium I'm on, coffee is just a total no-go, too much black tea is bad too, and alcohol can be a pain. I don't have any actual food-related issues, but you might?
posted by stoneandstar at 9:25 PM on May 5, 2016 [1 favorite]

Have you considered histamine intolerance? I've had to avoid high histamine foods lately due to brain fog, extreme fatigue, itching, etc. It's worse for me in the spring due to my pollen allergies, but some people are intolerant to histamine year-round. It would be easy enough to test out by cutting out high histamine foods temporarily (fermented foods, cured meats, etc).

Mast cell activation disorder might be another possibility, and one that's becoming more widely recognized, but I'm less familiar with it. I've heard it can take many patients years to be diagnosed accurately.
posted by zenzicube at 9:35 PM on May 5, 2016 [1 favorite]

My brother in law had similar issues. Severe sinus infections and what seemed like allergies but weren't. It seemed to be some kind of autoimmune issue (he's got autoimmune diseases all over his family: Type 1 diabetes, rheumatoid arthritis, crohn's disease, etc.) Anyway, like plenty of people have said above, he embarked on an elimination diet, and by removing the foods he was sensitive to, and the constant sinus inflammation went away.

There really isn't a lot of great information on the effects of diet on the body, and it seems a lot of it is very personal. I think doctors shy away from talking about it because it's not well understood and people's compliance is bad. (My husband's eczema goes away when he eats more leafy green vegetables. But what doctor is going to prescribe spinach for a skin condition?) On the other hand, it is the single thing most directly under your control, so it's worth committing a few months to your eating and seeing what changes.
posted by antimony at 9:38 PM on May 5, 2016

This is totally anecdotal, but as my allergies grew increasingly worse over the last twenty years, I tried to figure out on my own whether there were correlations with seasonal allergies or molds, by monitoring daily pollen and mold counts. For a long time I couldn't see a pattern. Then I started a new job, and my allergies got worse. I thought perhaps I was working in a sick building. I would get off of the elevator to my office, and the sneezing would start immediately, and go on intermittently, but uncontrollably, all day long. The penny finally dropped when I arrived back at the family home for my annual Christmas visit, and was bedridden for two days with swollen eyes, and out of control sinuses. I'm reasonably certain I'm allergic to stress. Have I had that confirmed by a doctor? No. Do I understand the exact mechanism? No. But I do know that, as others have pointed out, allergies are an auto-immune response, and it's fairly well established that stress has a big impact on the immune system, so I think it's a fair conclusion. Just some food for thought.

Now, when I'm having non-seasonal allergy attacks, I try to figure out what the stress trigger might be and address that. I also take one of the newer generation of antihistamines every day - rotating between Claritin, Allegra and Zyrtec. I take one until it seems to stop working and then switch to the next one. Lather, rinse, repeat. Allergies are greatly improved in the last couple of years. (Although the biggest improvement is no longer working for the assbag boss that made my life a misery.)
posted by ereshkigal45 at 10:21 PM on May 5, 2016

now, in the mornings and at night, it hurts. It woke me up one night. It generally clears up during the day but it always starts to hurt again

Maybe you've developed an allergy to something in your bedding? Do you feel any better when you sleep elsewhere?

edit: sorry, it's a non-allergy allergy. But still maybe try sleeping somewhere else for a bit (along with the other suggestions), in case there's any small symptomatic relief?
posted by cotton dress sock at 11:30 PM on May 5, 2016

I'm wondering if you've had endoscopy or a CAT scan of your sinuses. Because this sounds like textbook nasal polyps to me.

I also think you should get a second opinion on your tonsils. Having super inflamed and infected tonsils can cause all kind of problems, step or no strep. I went to an ENT once about recurring tonsil stones and she was like, "well, we can always take them out, if you want us to," like it was no big deal. I mean, recovering from the surgery obviously sucks, but I don't think all ENTs are as against removal as yours.

In the meantime, maybe try a non-inflammatory diet.

I"m so sorry, I hope you find a solution soon.
posted by ananci at 1:46 AM on May 6, 2016

I second the suggestions to try another ENT.

I also second that allergy testing doesn't find everything -- it only tests for the most common allergens, not everything. And some things aren't tested for -- e.g. common perfume irritants (of which my allergist said "Oh, everyone's allergic to THAT" -- thanks, very helpful). Did you have blood testing or scratch/injection testing? The usual blood test (ELISA) is notoriously difficult to reproduce between labs. The scratch test only tests for maybe 20 common allergens. So neither is going to be the final word on whether you have allergies.

And, throwing out another unlikely option, since you mention headache: have you considered migraine? Migraines can cause stuffy nose, nasal congestion, etc. and if you don't get migraine with aura, they may be otherwise indistinguishable from typical sinus headaches. (Doesn't explain the sore throat as well, but since you have reflux + shitty tonsils, there are certainly other options to explain that.)

I would suggest a log for symptoms + exposures -- there are apps for this now. If there's a pattern, whether that pattern is an allergy, migraine trigger, or something else, it'll make things a lot easier to see.
posted by pie ninja at 3:47 AM on May 6, 2016

I'm reasonably certain I'm allergic to stress.

+1. Absolutely true for me as well.
posted by PercussivePaul at 6:32 AM on May 6, 2016 [1 favorite]

Perhaps it's an irritant rather than an allergy. Sort of an aggravated form of getting dust in your nose. For the full range of symptoms you describe, it would have to be combined with something causing hypersensitivity. Have you tried wearing a dust mask while you sleep?
posted by SemiSalt at 7:03 AM on May 6, 2016

In may case, allergy testing didn't turn up anything in the first clinic I visited (arm prick test). A subsequent clinic didn't turn up anything with further back prick tests, but then they tried injecting larger amounts of pollen allergens, and bingo: observable reaction. They started pinpointing issues. Since then, flonase year round and Allergra daily in the weeks leading up to my peak allergies in March and September have helped tremendously.

Moving makes things better or worse: I've noticed major changes depending on when I've lived in nice, tree shaded areas (worse, sadly) or less tree-lined neighborhoods (better). At a week-long meeting on an equatorial island, I noticed (along with several other temperate zone allergy sufferers who attended) that all sorts of baseline symptoms went away quickly.

Lack of sleep, stress, and dry skin can all exacerbate problems. It's taken years, but once I got the specific knowledge of what was bothering me (certain grasses and trees, dogs) and managing for it, I've had a few years with no major problems.
posted by bendybendy at 7:06 AM on May 6, 2016

I tested as not having any allergies with my first doctor. It took a blood test for me to learn that I had food allergies. I also have every other allergy as well but the doctor missed it. Once I was on a restricted diet, I was able to tell that certain chemicals triggered reactions. There isn't a test for chemical allergies. With your digestive issues, food allergies would be a good start, since your food isn't being broken down properly. Some things to do:

Take probiotics.
Remove all scented anything from your environment.
Switch to allergy free laundry detergent and never, ever expose yourself to a dryer sheet.
Make a list of your favorite foods, the ones that you get a little high off of after you eat them, and then stop eating them for a week.
Keep a food diary.
Understand that Glade Plug Ins will kill you.
Keep your windows shut.
If you smoke, stop.
Don't use any cleaning products that were invented after you were born. Lysol products destroy me. Windex puts me in bed for a week.

Turn your bedroom into a recovery zone where your body can truly rest and recover every night. Buy a great hepa filter that you run in there all the time. Get new bedding that has never been washed in Tide or tainted by dryer sheets (the chemicals can cling on there for several washings). Replace your pillows and vacuum your mattress. Get rid of all carpet, curtains, and pets for that room. Keep dirty clothes and worn shoes out of the bedroom. Wash your hair every night before you go to bed.

Once you figure out what is causing the worst of it and start avoiding it, your body should begin to recover. It takes a long while. Acupuncture helps. Some people like to see a chiropractor. Don't buy all the pills and crap that they try and sell you. You are probably allergic to the binders that are used to keep the pills together.

Oh, and one more thing, stress makes everything worse.
posted by myselfasme at 12:22 PM on May 6, 2016 [2 favorites]

Echoing the idea that it may still be allergies. I'm allergic to something late summer/early fall in my hometown that is murder. I have a very good allergist and we've tried to figure it out, to her frustration. She's tested some odd native weeds in addition to ragweed. She said that she has a handful of patients like me that react at the same time, but she can't pinpoint it -and is frustrated enough that she's considered quitting her practice just to research whatever the hell is bugging people in SE Wisconsin that isn't ragweed.

But also, as it's worse at night, are you sure it's not still LPR? Reflux is worse at night. Have you tried sleeping with a wedge or other tools for elevating your head? What other dietary changes have you made? Avoiding tomatoes is just one small part of the reflux puzzle.

Lastly, my LPR started when I started adderall for ADHD- apparently a common side effect of stimulants. Any chance there is something like this in your medical history that may have triggered it? I think there are a few others that can cause it, one of them being Welbutrin. I'm not sure what others.

I have used DGL to combat reflux in the past. Aloe Vera juice is supposed to be good as well, as long as you get the peeled kind. I couldn't drink it though, it tasted horrible! But you may be more stoic than I.
posted by [insert clever name here] at 4:47 PM on May 6, 2016

I had severe allergies when young and throughout my teen years into early adulthood. In my twenties I was fortunate, after allergy testing detected little to no formal allergic reactions, etc to find an allergist who was able to diagnose "non allergic rhinitis with eosinophilia syndrome."

I used to have many of the same symptoms you described, sneezing attacks, runny itchy red eyes, nasal drip, utterly miserable at times, etc.

I was prescribed a nasal corticosteroid nasal spray, flusinonide or something like that, and used it initially twice a day for a couple of months, then when symptoms diminished, used once daily, weekly, then rarely. It was a fantastic "recovery."

I still have to do a "tune up" every now and then (with flonase) when I have a flare up (rarely). I was very fortunate.

The allergist had me blow my nose into saran or plastic wrap then did a study through a microscope to make the diagnosis (I assume identifying the eosinophils). I was fortunate to find him.

Good luck.
posted by WinstonJulia at 12:38 AM on May 8, 2016

« Older Do you have a favorite can opener?   |   Reassess value of house? Newer »
This thread is closed to new comments.