Food Allergy Support

Discussion Boards => Adults with Food Allergies => Topic started by: jschwab on October 24, 2013, 10:55:01 PM

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Title: Desensitization therapy for adults?
Post by: jschwab on October 24, 2013, 10:55:01 PM
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?
Title: Re: Desensitization therapy for adults?
Post by: lakeswimr on October 25, 2013, 06:39:16 AM
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. 
Title: Re: Desensitization therapy for adults?
Post by: rebekahc on October 25, 2013, 08:29:55 AM
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.  :-/ 
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 25, 2013, 11:30:23 AM
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.
Title: Re: Desensitization therapy for adults?
Post by: rebekahc on October 25, 2013, 12:05:34 PM
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.
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 25, 2013, 02:36:47 PM
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?
Title: Re: Desensitization therapy for adults?
Post by: twinturbo on October 25, 2013, 03:09:26 PM
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.
Title: Re: Desensitization therapy for adults?
Post by: spacecanada on October 25, 2013, 03:22:53 PM
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. 
Title: Re: Desensitization therapy for adults?
Post by: lakeswimr on October 25, 2013, 04:58:13 PM
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? 
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 25, 2013, 07:15:56 PM
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.
Title: Re: Desensitization therapy for adults?
Post by: Macabre on October 26, 2013, 08:05:21 AM
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. 
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 26, 2013, 10:52:49 AM
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?
Title: Re: Desensitization therapy for adults?
Post by: twinturbo on October 26, 2013, 02:41:30 PM
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

Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 26, 2013, 03:23:53 PM
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.
Title: Re: Desensitization therapy for adults?
Post by: twinturbo on October 26, 2013, 03:45:10 PM
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.
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 26, 2013, 05:20:29 PM
Yeah, I am starting to pick up on how rare these docs are. Desensitization therapy is kind of far out on the horizon right now - my question was more to clarify what my doctor told me (ie. there are "food allergy shots"), not so much to indicate that I am burning to do a course of the therapy. I find it a little stressful to think about. My quality of life is not terrible and I have serious family obligations that preclude going down to Baltimore on a regular basis.

At this point, I just need to talk to someone who can tell me if I'm likely to keep reacting to new things, what the latest research shows, what could help minimize reactions, stuff like that. I'm getting nowhere online trying to find a doc who is publishing or treating in this area where I am, though, which is kind of crazy because I live in a center of medical research with a high concentration of research hospitals. I finally decided to ask in my moms' group for recommendations for pediatric allergists that specialize in food allergies. The doctor I was sent to has an "interest" in food allergies but I looked at her published papers and it's all on asthma, so I think I will give her a pass and keep looking. Hopefully, I will be able to get a new referral for someone else.
Title: Re: Desensitization therapy for adults?
Post by: twinturbo on October 26, 2013, 05:58:57 PM
Understood. It's hard to factor it in a way that makes sense because unless you see an allergist on a regular basis you don't realize how infrequently you usually see your allergist on a regular basis. The most that would happen is an establishment appt you get your blood and scratch done, get your script, then get a call back to discuss your results. Unless you're seeking active treatment you see them intermittently to about once a year. Initially you might do a food challenge through a local allergist who shares you with a guru as a 'mutual patient'. It's a nice happy medium because you get the big facility protocols at your local office--when all parties agree.

Being seen at a food allergy research facility makes it lickety-split, no bull(  ) instead of speed dating the pool of unknowns in your more immediate area. Two hours each way once per year is nothing and I say that with an utterly ridiculous full plate. I would never recommended it unless, in its own way, it's less a hassle than working your way through dead ends. And you got some dangerously bad info based on what you said.

For sure you'll want to weigh all your options but if you need a sure bet to move on and the ones in your more immediate area are floundering, it'll get the job done. Don't worry about getting a cure there isn't one. The game becomes getting someone who can correctly triangulate what your true allergens are, how much you need to avoid and what your emergency plan is.

It's all up to you but explaining the method to the madness hopefully puts a better perspective on it.
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 26, 2013, 06:11:06 PM
That makes sense and I appreciate you taking the time to type it out. Can I ask you again who the doc is, because when I went to the Hopkins site, I could not find a Woods? I think looking at their website, it's indistinguishable from the services offered up here at Penn and Jefferson, but you are saying it's much better clinically because they actually do food allergy research there? I think I am just still trying to wrap my brain around the fact that there is no serious research being done in Philly, given how much medical research goes on here within ten minute's walking distance from my house. But I think you are right, it's really bad. I just messaged with a mom in my group whose kid was in the hospital for two days when he was three for a milk allergy diagnosed at 6 months of age and she has never seen an allergist since he was 6 mos. old because she can't find someone she trusts to do an oral food challenge. The are just winging it and he almost died. That is just crazy to me!

Just to be sure I am looking in the right place, is this the clinic you mean http://www.hopkinsmedicine.org/allergy?
Title: Re: Desensitization therapy for adults?
Post by: twinturbo on October 26, 2013, 06:31:18 PM
I'm gonna jet for the day in a sec but didn't want to leave you with a dead end.

Wait to see if some of the others can come up with someone in Philly and/or others that go to Johns Hopkins. I think lakeswimr goes to that facility so first hand insider data is good. Maybe she knows something about adults in that clinic or specific doctors. It's Saturday anyhow.
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 26, 2013, 06:43:29 PM
Thanks, your tip led me to finding that there is a food allergy consortium for research (no Philly institutions involved). Johns Hopkins and Mt. Sinai's Food Allergy Institute were the closest. My uncle is traveling down to Hopkins for treatment of a rare disorder he just developed. I think i am just the kind of person who feels dumb making a fuss over something that cannot be helped, KWIM?
Title: Re: Desensitization therapy for adults?
Post by: rebekahc on October 26, 2013, 08:20:11 PM
The doctor mentioned earlier is Robert Wood, but he's pediatric @ Hopkins Children's Center.  It's usually quiet here on the weekends, so you may have more Philly area people chime in Monday.
Title: Re: Desensitization therapy for adults?
Post by: twinturbo on October 27, 2013, 09:09:58 AM
Let's play guess a Philly allergist with five minutes of Google. http://www.philadelphia-allergy.com

AAAAI.org lists him board certified sees both pediatric and adults participating in continuing education with other allergists through AAAAI.org's education feature which I guess shouldn't be visible to the public but someone there messed up permissions on individual file retrievals.

He's got at least one paper (I think he was lead author hard to read on phone screen) on anti-IgE, and no matter where I look I can't find a bad review on the man. I don't know if this is the guy you saw but on paper he's very promising.

And if you want to email him first I grabbed his address from the AAAAI.org education file. Not always the best way but it was there.
Title: Re: Desensitization therapy for adults?
Post by: lakeswimr on October 27, 2013, 09:34:50 AM
Have you had anything with peach since?  Some people have such bad oral allergy syndrome that it can produce some throat swelling.  I wonder if that might have been the cause?  Oral Allergy Syndrome rarely requires the epi pen but sometimes it does in people who get throat swelling.
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 27, 2013, 11:05:33 AM
Quote from: twinturbo on October 27, 2013, 09:09:58 AM
Let's play guess a Philly allergist with five minutes of Google. [url]http://www.philadelphia-allergy.com[/url]

AAAAI.org lists him board certified sees both pediatric and adults participating in continuing education with other allergists through AAAAI.org's education feature which I guess shouldn't be visible to the public but someone there messed up permissions on individual file retrievals.

He's got at least one paper (I think he was lead author hard to read on phone screen) on anti-IgE, and no matter where I look I can't find a bad review on the man. I don't know if this is the guy you saw but on paper he's very promising.

And if you want to email him first I grabbed his address from the AAAAI.org education file. Not always the best way but it was there.


Oh yeah, he looks much better. I would not have noticed him in the long list of indistinguishable practices. He is not the person I saw. It sounds like it would be easier to call and get a read on a single-person practice than one of the big practices.
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 27, 2013, 11:12:18 AM
Quote from: lakeswimr on October 27, 2013, 09:34:50 AM
Have you had anything with peach since?  Some people have such bad oral allergy syndrome that it can produce some throat swelling.  I wonder if that might have been the cause?  Oral Allergy Syndrome rarely requires the epi pen but sometimes it does in people who get throat swelling.

I don't know much about OAS. I have a few friends who have it who cannot eat uncooked fruit without their mouth swelling. This did come on at the height of fruiting for tree nuts in my area. There are walnuts laying all over the ground where I bike and my backyard is littered with gingkoes (which I'd be roasting if it weren't for this - I hate seeing them go to waste!). I have not had peaches since the attack, but I have eaten apricots, apples, pears and tons of bananas with no problem. Does OAS usually lead to other symptoms of anaphylaxis like drop in blood pressure and hives?
Title: Re: Desensitization therapy for adults?
Post by: LinksEtc on October 27, 2013, 12:45:38 PM
Quote from: jschwab on October 26, 2013, 06:11:06 PM
Just to be sure I am looking in the right place, is this the clinic you mean [url]http://www.hopkinsmedicine.org/allergy?[/url]



Hi Jschwab,

I think you were looking at the adult site:
http://www.hopkinsmedicine.org/allergy/interests/

Here are the allergists at Hopkins' pediatric allergy.
http://www.hopkinschildrens.org/allergy-faculty.aspx

-----------------------------------

Quote from: jschwab on October 26, 2013, 10:52:49 AM
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.


For difficult cases, I would agree that Hopkins (at least pediatric) is worth the drive, but I'm not sure you're at that point yet.  Am I correct that you haven't seen this Phili allergist yet?  Do you have any reason to doubt that this particular allergist would not be able to help you sufficiently?  Is this a board certified allergist having significant experience with FA?

You sound like you could really benefit from an allergist's help ASAP so I'd hate for you to cancel an appointment unless you have good reason to doubt that this local allergist will be able to help you.  It doesn't sound like you are interested at this time in participating in research such as desensitization, so cutting edge research doesn't need to figure in to your decision making so much right now.

---------------

Do you have a food allergy action plan that is signed by your doctor?

For example:
http://www.foodallergy.org/document.doc?id=234

Do you now always carry epi & are you prepared to recognize symptoms of an allergic reaction and treat accordingly?

Start with the basics ... don't get ahead of yourself worrying about stuff like OIT or SLIT.

 :grouphug:
Title: Re: Desensitization therapy for adults?
Post by: LinksEtc on October 27, 2013, 01:00:17 PM
Quote from: jschwab on October 25, 2013, 11:30:23 AM
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".

 :paddle:

Is this your primary doc now?  This would make me consider getting a different primary doc.

A good primary doc will know the value of referring to appropriate specialists.
Title: Re: Desensitization therapy for adults?
Post by: LinksEtc on October 27, 2013, 01:11:55 PM
Quote from: jschwab on October 24, 2013, 10:55:01 PM
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.

As I think the others mentioned - this was bad info ... reputable allergists are not currently doing shots for food allergy.

Title: Re: Desensitization therapy for adults?
Post by: Macabre on October 27, 2013, 01:30:50 PM
For shrimp: I never ever eat grilled or fried food in a restaurant unless the chef can guarantee that it is a dedicated surfaces. They will say, "we clean the grill well," and I will ask of they cleaned it with bleach or soap and water, knowing they didn't (I wouldn't either).  Also, many places fry shrimp in the same place they use for frying other things--like chips. 

I'm guessing fryers also pose problem for milk.

Even though shellfish and nuts Te more common adult onset allergies, you can develop an allergy to any food.

Honestly, right now--and I am saying this as a person who developed allergies in 2005 as an adult And who has a 15 year old son with a peanut allergy, i would recommend living with it a bit before you worry about desensitization. Learn what's safe and what isn't--and how do be a sleuth at avoiding.

Everyone wants to get rid of this. But early on its good to do us on living with it.
Title: Re: Desensitization therapy for adults?
Post by: LinksEtc on October 27, 2013, 01:41:56 PM
I did go back and read your story more.

I'm sorry to hear about your experiences with the first allergist & the paramedics.  You are your best advocate. 

I agree with Twinturbo about frogs ... We here can help you recognize when you might be dealing with one  ;) . 

Finding a good allergist is extremely important - don't give up hope- there are lots of them out there.  With a good allergist, tests like office food challenges can be extremely helpful in confirming true allergies.  We have been through several.

Please be aware that just because some reactions may have resolved without epi, that doesn't mean future reactions will.  If epi is not used in time, it has less of a chance to be effective.  It sounds like those paramedics telling you it was anxiety were out of line.  Get a good allergist, get a good allergy plan, and don't let others make you doubt yourself.
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 27, 2013, 05:22:41 PM
Quote from: LinksEtc on October 27, 2013, 01:41:56 PM
I did go back and read your story more.

I'm sorry to hear about your experiences with the first allergist & the paramedics.  You are your best advocate. 

I agree with Twinturbo about frogs ... We here can help you recognize when you might be dealing with one  ;) . 

Finding a good allergist is extremely important - don't give up hope- there are lots of them out there.  With a good allergist, tests like office food challenges can be extremely helpful in confirming true allergies.  We have been through several.

Please be aware that just because some reactions may have resolved without epi, that doesn't mean future reactions will.  If epi is not used in time, it has less of a chance to be effective.  It sounds like those paramedics telling you it was anxiety were out of line.  Get a good allergist, get a good allergy plan, and don't let others make you doubt yourself.

After the disbelieving paramedic dropped me off, the ER docs were really good and took it very seriously, so that left me feeling better that if it happens again or is more severe that I will get good care. I even sent the ER a thank-you note to let them know I appreciated it a lot. I looked really good when I got there but they took my report of what happened extremely seriously and were right on top of it when symptoms briefly returned (I guess the Epi wore off?). I was glad because I always half-assumed it would never be handled attentively in a busy ER unless I was passed out cold when I got there. They had a special stretcher next to the nurse's station in the hallway with a rounded mirror so that whoever was sitting there could be seen from a lot of vantage points. It looked to me like that was where they parked allergies and asthma cases for observation which was very cool. I can tell you I will not be afraid to use the Epi in the future and I would encourage everyone to not be afraid of it. I think especially with how much more severe this reaction was, and that it was nuts, and the severity of the subsequent accidental reactions this past month that it made me realize I was really dumb in the past. It was also such a relief to have the pen and just feel better right away. From the perspective of it working and making me feel better, it was such a relief. I have had reactions previously that resolved but that left me shattered for days because I had to kick in so much to battle it. I felt better in the aftermath of this than I had previously, I think.
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 27, 2013, 05:42:56 PM
Quote from: LinksEtc on October 27, 2013, 01:00:17 PM
Quote from: jschwab on October 25, 2013, 11:30:23 AM
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".

 :paddle:

Is this your primary doc now?  This would make me consider getting a different primary doc.

A good primary doc will know the value of referring to appropriate specialists.

I find that my older friends and my parents get good referrals to specialists from their doctors but I think this is the first real referral to a real doctor I've ever gotten. I've had doctors tell me if I find a specialist I want to see to have something checked out, they will write me a referral but I have never had a doctor tell me "go see X, he's good for y". They usually can't recommend anyone, they just think I should see someone. I usually just end up not seeing specialists because I hate doing the legwork myself. I also used to have the problem that I had a PPO where I did not need a referral to see a specialist so the primary wouldn't issue one, and then the specialist would not make an appointment without a referral so I was in a Catch-22 and I missed a lot of follow up care because of that. Once I had a sports injury that necessitates surgical repair and I was literally calling around to surgeons myself because my doctor would not recommend one. I can tell you there are not a lot of surgeons that just take patients in off the street. The one I needed was fine with copies of my MRI but I would have been really up a creek if not. I think that might have been how I ended up at the allergy practice I did - I think it was the only one that would take me without my primary being in touch with them. It's kind of nutty around here and there is a doctor shortage, so nobody is beating down anyone's door to get new patients.
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 27, 2013, 06:42:32 PM
Quote from: Macabre on October 27, 2013, 01:30:50 PM
For shrimp: I never ever eat grilled or fried food in a restaurant unless the chef can guarantee that it is a dedicated surfaces. They will say, "we clean the grill well," and I will ask of they cleaned it with bleach or soap and water, knowing they didn't (I wouldn't either).  Also, many places fry shrimp in the same place they use for frying other things--like chips. 

I'm guessing fryers also pose problem for milk.

Even though shellfish and nuts Te more common adult onset allergies, you can develop an allergy to any food.

Honestly, right now--and I am saying this as a person who developed allergies in 2005 as an adult And who has a 15 year old son with a peanut allergy, i would recommend living with it a bit before you worry about desensitization. Learn what's safe and what isn't--and how do be a sleuth at avoiding.

Everyone wants to get rid of this. But early on its good to do us on living with it.

Thanks for the advice :) Shrimp and milk are my old allergens and I had it down to three restaurants I could trust. I've been able to avoid them pretty well with my only slip up in the past couple years being when someone stayed at our house while we were out of town 18 months ago. She must have slipped a butter knife in the peanut butter jar or something because when I ate a couple spoonfuls from it, I had a really bad reaction. It just killed me that I had a reaction in my own house eating my own food. That was the time my throat closed completely and we could not find the Epi and I freaked out because previous to that I had never had anything happen at home (until this stupid almond thing). And I know too well the restaurant roulette. I tried some new restaurants a couple times and reacted and gave up on it. It's hard because I have kids and I feel like I keep them in a prison, too, most of the time. I make myself take them to restaurants (I don't eat) just so they continue to have the experience. But they don't really get to try a lot of new, exciting foods very much. I am fine with the finality of the allergies - I was only asking about therapy because my doctor told me I could get allergy shots for food allergies (I think she was confused).
Title: Re: Desensitization therapy for adults?
Post by: LinksEtc on October 27, 2013, 07:46:41 PM
We have insurance that does not require referrals, but our primary docs give them to us anyway when they feel we should have them for health reasons.  Having a good primary is like having a strong foundation that can be built off of in managing your health.
Title: Re: Desensitization therapy for adults?
Post by: jschwab on October 27, 2013, 08:26:20 PM
Quote from: LinksEtc on October 27, 2013, 07:46:41 PM
We have insurance that does not require referrals, but our primary docs give them to us anyway when they feel we should have them for health reasons.  Having a good primary is like having a strong foundation that can be built off of in managing your health.

I know, I just can't find one and we decided to stop hopping around for awhile and just stick with a practice that is nearby. I had a good one for about a year a good while back and she actually died. They did not even send out a note to patients, I found out from the work colleague who sent me to her :(. I had one quit taking insurance to go to a self-pay only practice (she actually almost killed my oldest when she was a newborn, but she was still better than the others!). I just pray a lot that the kids never get any hard to diagnose disorders. When I was a kid it seemed so easy. The receptionist would even call and make an appointment at the specialist and ask them to fit you in if it was something serious. And the doctor always knew that so and so was good for this or that and who specialized in what. I have not been in a doctors' office like that in years. My parents' doctor does all that for them but I think it's because they are older and there are more standard screenings that they need and age-related problems that come up frequently enough (he's not taking patients, by the way). Last year I had lyme diagnosed pretty quickly at this practice we are with and I got antibiotics quick which is critical for treating lyme. I am in the woods a lot and I hunt deer so it's nice to know they know lyme and that, honestly, is what's keeping us there for the moment. Some specialty areas are tough, too, to get an appointment in this area. Gyn is a four to six months's wait here, so if you have uterine cancer or want a breast lump checked out, you could basically be a goner before you ever get to see anyone.