Desensitization therapy for adults?

[jschwab]

Hi, I might have a few questions for awhile. So, I just had a major new allergic reaction to a new food. When I did my followup appointment (with a doc in the practice but not my regular doctor), she said that she sends her allergic patients to an allergist who gives shots for food allergies when I asked her if an allergist could help besides testing. Are there therapies now that they are using in adults to desensitize them to their allergens? When I was initially diagnosed (with other allergies) a few years' back, they were doing some desensitization with kids, but not adults, as I recall. Has this changed?

[lakeswimr]

There are no shots for food allergies.  About maybe 9 or so years ago Mt. Sinai allergists were doing a research study in which they were trying to desensitize people with food allergies using shots and at first it seemed successful and then one of the study patients died.  So, all legitimate allergists would NOT use injections to try to desensitize someone to a FOOD allergy.  That said, people certainly, often with great success, use injections to desensitize themselves to stinging insects and environmental allergies. 

Do you know what caused your reaction?  There are desensitization programs for foods that are in various types of trial stages around the USA that involve orally ingesting tiny and then increasing amounts of allergens (not safe to try at home).  The results have been mixed.  Some people have had success but some have gone a long time tolerating a given dose and then had sudden anaphylaxis to smaller amounts than they seemed to be tolerating.  I know someone who has a child who tried and failed the desensitization and kept having serious reactions, some requiring the epi pen, while taking the daily dose.

I know of a doctor in Florida who says he runs an allergy clinic in which they use some odd test and then inject people to desensitize them to food allergies.  I know someone who doesn't even have food allergies but has serious environmental allergies.  He went there, got 'diagnosed' with multiple food allergies he doesn't even have (never had a food reaction in his life) and then got put on shots.  This is very scary.  So, for all I know you were recommended to see some one like this who is practicing something not in line with current best standards.  If you really did get recommended to see someone who does actual shots for food allergies *run away* and maybe make a phone call to report this because it isn't safe. 

[rebekahc]

I think OIT is available to adults as well.  I'm pretty sure the clinic in LaCrosse, WI treats adults (SLIT).  Most of what you read about wrt clinical trials is with kids because they are the population most likely to have food allergies.  Childhood onset food allergies may also be more responsive to treatment than adult onset allergies, but I'm not sure. 

If you look for threads here on OIT and SLIT, you'll find a ton of info - including new info that OIT may not be the magic bullet it was once hoped to be.   

[jschwab]

Thanks for the responses - it's much clearer now.

I thought I read specifically that oral desensitization therapy was not made available to adults because kids are expected to "outgrow" allergies and will respond to the treatment, but adults would not respond because their allergies were typically lifelong. That was a few years ago, though, and I have not even thought about allergy treatments since, since strict avoidance has worked OK for me. I only go to a very, very few restaurants, don't eat other people's homes, don't go to new restaurants, etc. I never had to use my Epi-Pen since my reactions always passed quickly (even the time my throat completely closed off, it lasted just a very small amount of time) and I was doing pretty good. Since getting very strict, I'd been incident-free for about 18 months and even starting to think I was getting less sensitive to cross-contamination. For my specific allergens, I had anaphylactic reactions about five years ago to shellfish and milk within six months of each other. My primary doctor handed me a prescription for epinephrine and told me to find a youtube video at home to figure out how to use it and that I did not need to see an allergist since they "can't do anything". I went and saw an allergist anyway since I had a PPO and did not need a referral and I wanted more information, at the very least a lesson in using the Epi. He started out by assuring me it was 100% not possible for me to have adult onset food allergies and sent me for an expensive test for some genetic disorder he was convinced might be the source of the throat-tightening. I ended up passing the skin prick tests but failing the blood test for shellfish. That caused a lot of panic on their part because they told me the blood test categorically cannot be positive if the skin test is negative. I think they may have actually told me I could go ahead and eat anything I wanted so they got very stressed out trying to reach me to let me know. I never had any definitive diagnosis for dairy, but my symptoms were the same so I avoid as strictly. The allergist wanted me to do an oral food challenge for milk in his office (nowhere near an ER) to confirm milk, but I declined that on the advice of an immunologist I know who thought it was suicidal (he also did not have kind things to say about allergists). I have not seen an allergist since. Fast forward to this month when I developed a serious reaction to almonds - much more serious than any previous episode - and ended up with my husband using the Epi on me and me landing at the ER for observation (they were great). When I followed up with my primary practice, I was advised to get tested again for any new allergies and referred to this allergy practice.

I think with the "shots" that it was the primary doctor who was just confused about what was available or maybe I seemed like I might not comply in seeing an allergist (I told her about the bad experience last time) and she wanted to convince me they have things they can actually do to help and she told a little white lie. She sent me to an allergist associated with a large research hospital, so I doubt that this person is doing anything like what you are describing, lakeswimr (University of Pennsylvania). I thought maybe things had progressed a bit in therapy and I missed it. I would be too nervous to do desensitization therapy even if they offer it, I think, just like the oral food challenge gave me the heebeejeebees.

[rebekahc]

We have members in your area, perhaps they could recommend a good allergist for you - it sounds like your first one was terrible.  Not sure why your friend the immunologist would disparage allergists since it's the same thing (see link). 

http://www.aaaai.org/conditions-and-treatments/conditions-a-to-z-search/allergist---immunologist.aspx

This link also has a link to a referral service that might be useful to you.

[jschwab]

The allergist I saw was in that listing of Board-certified doctors. So is the one I was just referred to - there are not that many practices to choose from since they are all big groups so you can switch within practices but there are only so many practices to choose from.

Yeah, I don't know why my doctors were so negative about allergists. My primary doctor told me flat out it would be a waste of time to see one, even just to get testing. Since I had a PPO at the time, I didn't need to rely on getting a referral but seeing the allergist put me in a more dangerous spot than if I had never seen one, which is maybe what my primary was anticipating. The other doctor I know (the one I called an immunologist) did not work with allergies but with other immune disorders - he was trained in Internal Medicine and did most of his work with AIDS patients. Both of those doctors have been in medicine a long time and maybe have just had a lot of bad reports back from patients. With the allergist I saw, I could have chosen to eat some shrimp or some cheese thinking all of it must have just been an anxiety attack or otherwise "all in my head" and been seriously in trouble because he told me, in no uncertain terms, that it was 100% not possible I was allergic to any food (despite my hands swelling up when I peeled shrimp). I'd stuffed my Epi-Pen in a drawer and forgotten about it, actually, because it made sense to me that I could not be the only adult in the world to develop food allergies  . I wonder what the doctor will say - I had a two month wait for an appointment after the ER visit so I still have another month until I find out what they say. I think I am mostly expecting to be blown off again and told it's not real - would that be normal? What do I do if I don't test positive?

[twinturbo]

Because of the board certified allergist/immunologists the percentage that truly understand food anaphylaxis and are all up to date on knowledge is a fraction of a fraction. The only way to find it is the hard way, to go through 'em. Most other doctors outside of that specialty are clueless about it therefore it may be the source of disdain. Ignorance.

[spacecanada]

Sadly, I can relate to the allergist's advice.  The allergist I saw told me the same thing, going so far as telling me that I don't need an EpiPen and not to bother getting a new one when it expires.  My SPT and RAST were negative, and he ignored that I had two anaphylactic reactions plus many minor reactions before.  Thankfully, my GP is fantastic and gave me an abundance of allergy advice and information.  She continues to give me the latest allergy information, along with EpiPen and Allerject prescription refills, at my annual check ups.  Considering my anaphylactic reactions since the first diagnosis (by my GP), if I had followed the allergist's advice I wouldn't have had Epi for them. 

It's definitely time for you to find another allergist!  I'd find a new allergist too if my GP wasn't on top of allergies already. 

[lakeswimr]

Not all allergists specialize in food allergies.  The allergist you saw who said blood tests can't be positive if skin is negative sound new and uneducated because both blood and skin testing has a HUGELY high false positive rate (meaning a person tests positive when they aren't allergic) so it is very possible and happens often that people can test positive on one test and negative on the other.  A positive result by itself means very little by itself since studies have shown false positive rates on testing of 86% and 90%.  In the case where you suspect a particular food caused a reaction the test helps figure out if you are right or not.

Also, people certain can develop adult onset food allergies.  Seafood and nuts and peanuts are common foods for this to happen with, milk, not so much.

If your throat closes up, even for a short time, you should epi yourself and call 911.  That is NOT safe to not epi.  Once a reaction starts there is no way to know how severe it will get.  Most reactions self-resolve even without any medication but some progress to life threatening and even fatalities.  That's why we have to treat any reaction that is systemic (meaning in more than one part of the body) and any reaction that involves breathing or any swelling of the mouth/throat (and on some plans, any swelling anywhere on the face) as potentially life threatening and epi asap.  The epi pen works best if given asap.  When it is delayed it might not work.  Most all fatalities are in people who delayed the epi more than 20-30 min from the start of a reaction.

It sounds like you might not have a written plan of when to use the epi pen.  If you google, 'food allergy action plan faan' you will get one.  There are others.  Some here like the anaphylaxis grading chart but I do not because I don't think it calls for the epi in some cases when it should.

Testing can be falsely negative, too.  Testing accuracy is about 90% for blood and skin for negative results or a bit higher but that leaves close to 10% of people who test falsely negative.

Food challenges are usually safe.  I have done them with my child.  The first time was super scary but now that I know what they are I don't feel scared.  You start with the most minute amount of allergen and only if skin testing THAT DAY with the actual food is small enough to warrant trying.  They wait 15 min or more between doses and if a person starts to react the epi asap. 

It is safer to do a challenge and know for sure what you are allergic to than to have a few foods you suspect and not be sure and end up eating something allergenic accidentally, you know? 

[jschwab]

I don't know - the guy I saw has been around for awhile. I think he was the one who took adults and was not exclusively pediatric so I had to go to him in that practice? I was annoyed that he discounted the shellfish, especially. I understood with the milk being so rare that he would be skeptical, but my mother developed a shellfish allergy around the same age and and I had a history of my hands swelling up when I was peeling shrimp (which he said he "could not explain").

I'm very sure I reacted to milk. I had already given it up entirely due to increasingly severe gastro distress thinking I'd started to have issues with lactose when I accidentally had a tiny sample of peach gelato instead of sorbetto (you know, those little sample spoons) and my throat closed up on the way home similarly to when I had the shellfish reaction. I called to see what was in it and they said it was actually gelato and they'd gotten it wrong when I asked if it contained milk. I had cross-contamination events after that where it could have only been milk as the culprit. Up until this month with this new allergy, I have had things mostly really under control after the initial spat of cross-contamination issues while eating out (I stopped eating out). I have had to be very careful but it's been worth it. I should have used my Epi-Pen at times but I didn't really know anyone with allergies and I did not get much advice about when to use it from the doctor and, frankly, I was scared of giving myself a heart attack (the time my throat closed all the way which was the first time I had no doubt I could not find it). I did use it for this new allergen at the beginning of the month (almonds) because the reaction just felt a lot worse, if that makes sense. My husband says I passed out but I don't remember that. I was very relieved when the pen worked and I felt immediately better. The paramedic treated me like dirt and said I was having an anxiety attack. He sighed and fumed the whole way to the ER and basically did not check me over at all but the ER was good. I am seriously ashamed to say that I tested my hypothesis that it was almond by eating a single almond the next day while I was still hopped up on Benadryl and steroids. I reacted pretty bad so I have no doubt about almonds right now. I guess with tree nuts the question is one of severity and whether it's also other nuts? There are only three major practices where I am (Philly) so I can only hop so much before I dead end, which is part of the reason I never tried to find another allergist. How do you find out which doc in a practice is good for food allergies? They all list it as a specialty.

[Macabre]

I developed allergies to shellfish, sesame and chamomile when I was in my late 30s.  Even a cursory reading about shellfish allergy on the internet should turn up the fact that there is a pretty high rate of adult onset allergy with it--sad to say.

If I were you, I would never go to that allergist again.  I would find one that is competent.  If your allergist has "been around a while," maybe he is very old and not up on current practices/research/knowledge?  I would call ones in your plan and ask about food allergies.  Ask what the percentage of their patient load has food allergies.  Ask when the last year it was that the doctor went to the annual AAAAI meeting.

An in office food challenge (IOFC) can be safe--but you want to know what system the doctor has in place for handling anaphylaxis.

As far as desensitization goes, I'll start SLIT in January.  I have an appointment at Allergy Associates of La Crosse then (my son is already a patient there).  They start with an extremely low dose and take much longer to ramp up and treat.  Whereas OIT has been a six month to a year long process elsewhere, this will be a four year process. They've had very good results--better than the OIT and SLIT trials.  Their goal is not to be able to consume it but to not react to cross contamination. 

Welcome!! I'm glad you found this place. I hope it's a helpful community to be a part of. 

[jschwab]

Sorry to hear about your allergies - glad to hear you have desensitization therapy available. I need to figure out those acronyms - OIT and SLIT. I don't really know how to evaluate the severity of my allergies. Cross-contamination has been a big problem with milk and shellfish. I had a really bad reaction in a restaurant once where I got a very simple meal and received lots of assurances about cleaning the grill, etc. I did react to almond oil on my skin after the bad ER visit reaction (in lotion) but it was just hives and did not lead to anaphylaxis. I feel like if I avoid strictly, I will be OK.

I should be clear about the allergist I saw. That was some 4 or 5 years ago and I have never been back to him or any other allergist. I get new Epi prescriptions from my regular doctor. That guy is part of the largest allergy practice in the area and he is not so old, so I'm not really sure why he was so bad at his job? I know that women tend to get discounted more in the health care system so it might have been stereotyping. He was maybe around 50 and has a slew of titles - I think he's the practice manager now? It's the practice all the kids I know with food allergies go to. I think I had to see him because he was the only doc to take adults and everyone else was exclusively pediatric. I don't have a PPO now so I have to rely on the referral from the doctor and I'm not sure if I can just pick and choose who I go to like I used to be able to. As it was, this was a two month wait for this appointment, but maybe it doesn't matter since I have my Epi's in order and it's not clear that just any allergist will be able to help very much? I'm half a mind to just cancel so I don't get stuck in a rabbit hole again. I really, really, really hate going to doctors and would prefer to avoid it if possible.

Maybe I will cancel and see if I can get a real recommendation from someone who knows who's who (I'm in Philly) and then ask for another referral when I see the doctor next time? Does anyone know anyone in this area who is willing to see adults?

[twinturbo]

We all usually kiss a few frogs first in the metaphorical sense before finding the right allergist. I'd consider Dr. Wood at Johns Hopkins if he sees adults otherwise another allergist there. That's drivable.

The Johns Hopkins University School of Medicine
Division of Allergy & Clinical Immunology
Johns Hopkins Asthma & Allergy Center
5501 Hopkins Bayview Circle
Baltimore, MD 21224-6801

[jschwab]

Oh, wow, I would drive to Baltimore for my kids if they had allergies but, um, I cannot imagine hauling down there! Can he make it all go away If he can, I might consider it.

[twinturbo]

Immunotherapy for foods is a moving target. What you are requesting requires an extremely adept individual at the top of his or her branch of medicine so he or she does not kill you like the example of the one you initially posted about. Otherwise, yeah all cats are grey in the dark when it comes to dispensing epinephrine once per year.