Still no answers for me... helpful advice? Feedback? Something?

[femb0t]

Since mid-october, I've suffered through anaphylactic shock (once), anaphylaxis (numerous times) and regular reactions from different foods.  Peanut butter/anything x-contaminated with peanuts, wheat, pumpkin seeds, cherries, and who knows what else.  I have always had OAS symptoms from bananas, avocado, mango, honeydew & cantaloupe.

In October, I saw my PCP and was prescriped an EpiPen and given an inhaler.  He also recommended me to an allergist.

I had an appointment with said allergist after that who did nothing for me.  He just wanted to talk to me for 15 minutes and take my money.  Refused to schedule any kind of allergy testing for 6 weeks (of being free of reactions -- I never made it that long.  I still haven't.).

Then I was brought to another doctor who seemed more interested in helping me than the previous two.

Finally, FINALLY I had blood work done a couple of weeks ago... only to have everything come back negative.  I had a RAST done, as well as a CBC among other things.  The only thing that was out of range would be my monocyte count, which was sitting at 165... average range is 200-900 something.  I only know this because Quest has an app that lets you see your results even before speaking with your doctor.  My doctor has refused to return my phone calls for the last week.  I'm still having reactions, despite what my blood work is showing.  I also had a reaction the night before my blood work was done, if that counts for anything.

I know there are a lot of false negatives.  My mother does not believe this.  She is happier to believe that I'm just crazy and panicking every time I eat -- this is truly not the case.

A couple of nights ago I was going to try to eat a spoonful of peanut butter just to see what would happen this time around, but at the last minute decided against it.  My mom called me a chicken (she is not supportive in any way, shape or form) and told me I should've just done it.

And then last night, I went to a diner with my friends and had the bright idea of eating a piece of cake (strawberry shortcake), and of course, it was in that little carousel with all of the other cakes.  But hey, I have no allergies, right?  Wrong.  At a table with 5 of my friends, my throat got tight and I got dizzy and kept us there for about an hour before I could finally stand up.  No one really noticed anything wrong until I got very quiet and somewhat disoriented.

I don't know what to do anymore.  I have no help, barely any support and no one besides this community who can even try to offer up some kind of answer.  I feel like a giant anomaly at this point, and like I'm getting absolutely nowhere.

Any kind of feedback would make me happy.  Please?

[CMdeux]

Have you been keeping a detailed food diary?


If not, you should DEFINITELY start.

You should also not try to 'tough it out' the way you did at that restaurant meal.  If you are feeling disoriented, you have no good basis for making management decisions.  That's an epinephrine and ER moment.  No question.

I'm sorry that you haven't been able to get in touch with your allergist this past week.  Sometimes ours is very busy, and the route to get test results in hand is more circuitous sometimes than it should be for our physicians-- I hope that is all that is happening with your doc.



It seems like some in-office food challenges would be a good idea at this point. 

PLEASE do not try eating a large amount of a potential allergen-- especially peanuts or seeds.  Those reactions can be so unpredictable and dangerous.     The fact that you were, with a potential peanut allergy, considering eating a SPOONFUL of pb to see what would happen is HORRIFYING to me.  That could easily result in a situation in which no amount of medical care could save you.  Please know that.


Have you tried eating a VERY plain diet of only non-prepared foods?

What I mean by that is rice, whole potatoes, chicken breast, fresh fruits and vegetables without any spices, seasoning blends, etc.  A hard-core elimination diet.

  If you try that for two weeks, IF what you are facing is food allergy, you should see a dramatic improvement.  Provided that you aren't getting small doses of an allergen via cross-contamination, that is.  What this means is that you'll need to do ALL of your own food prep, and you should probably re-wash anything that you plan to use, particularly if others in your household use your (potential) allergens.  Non-stick cookware, btw, is notorious for harboring residue from foods.

Can you try an elimination diet?  That is, do you have the ability to purchase your own food from uncontaminated sources, prepare it yourself, and avoid restaurant dining?  If you aren't sure how to cook something-- ASK.  We can help you.  If you aren't sure how to minimize cross-contamination in plain foods like these, we can help you out, there, too.

Also, you're RIGHT about false positives, but it doesn't sound as though you've had enough help in ruling food allergies OUT as a cause of your symptoms.  Until you can, you won't get help for other underlying causes if food allergies aren't at the root of it all.  I know that you probably realize that.  I'm worried for you either way. 

Do you feel comfortable that you know when you should use epinephrine? 

[femb0t]

I've lost 15lbs since all of this began because I've not really eaten much (besides eggs... I can eat eggs, and damn do I eat a lot of eggs-- well, Eggbeaters) in the way of restaurants/diners... or at home.  I've stuck to a very plain diet -- even switched to brown rice pasta because what I was used to eating was then bothering me.  I weighed 149 and was at the gym 3-4 times per week before this started.  Now I'm at 134-135 and have not been to the gym at all because I don't have the energy.  In the beginning, my body was flipping out to something almost every other day and I was a total mess.  Since I've just about cut out all processed foods, the reactions have been fewer -- except when I make stupid decisions to "see what will happen."

Raw fruits/vegetables tend to trigger me, but I can eat them cooked.  I have a feeling that that isn't as weird as I think it sounds.

This third doctor isn't even an allergist... I had no choice in the matter because a) I have no insurance and b) my mother is paying for it -- despite the fact that she thinks I'm nuts.  She is picking and choosing who sees me right now.  I don't find this to be a genius move at all, but I was thrilled just to get testing done... which ran about $1100.  I doubt I'll be getting retested any time soon unless the insurance fairy drops me a card. 

I've kept a list of everything that I've reacted to, but that's at home... which I'm not at right now.  It isn't very specific though (for instance, I had a reaction to animal crackers but didn't write down the brand name because I'm an idiot... I simply wrote "animal crackers.").

Three weeks ago, I had a very simple meal -- ground turkey, white rice, yellow zucchini and some cheese.  Everything else has been a standard staple in my diet without an issue besides the zucchini, and that caused me a reaction almost worse than what I had last night.

I already have so much medical debt that I'm too scared to keep going to the ER.  One car accident from March set me back about $25k.  I was also just in the ER recently for chest & arm pain, which wasn't a heart attack but something that mimicked it (that's all I was told).

I should probably tell my friends not to leave it up to me to use the Epi.  They deem it necessary to ask me if they should use it and I just tell them no.  Perhaps we need to reevaluate our course of action.

I'm new to this kind of stuff and apparently not handling it in the smartest of ways, it seems.

[CMdeux]

See, though-- something jumped out at me right away from your post (at least from an FA standpoint)--

Eggs =/= "Eggbeaters."

Oranges =/= "frozen orange juice"

Unfortunately ANY processing step away from the whole food in its original state is an opportunity for cross-contamination.

Now, you may find in the end that such steps are largely unecessary ones for you personally once you figure out what your underlying allergy is and eliminate all sources of that allergen, but honestly, if you're as much on your own to figure this out as it sounds, then you're going to need to be ABSOLUTELY meticulous about what you eat in order to figure it out.

No cans, no boxes, nothing pre-prepared or prepped by someone else.  If it has an ingredients label on it, it's probably off-limits on an elimination diet, basically, unless the ingredients list includes only ONE term.  So "rice," "butter" and "olive oil" are probably okay-- but you may need to check with the manufacturer to make certain that they aren't processing anything else in the facility. 

"Cheese" can't mean prepackaged shredded cheese, which has other ingredients and processing/packaging steps... and it most certainly can't mean deli sliced cheese.

"Rice" can't mean a boxed mix, and it can't mean plain rice that you've added a mixture of seasonings to.

"Potatoes" can't mean boxes scalloped potatoes or even potato flakes-- only potatoes themselves, from a bag (or bin, I suppose) and carefully washed/peeled and cooked by you using only other safe ingredients. (Olive oil/butter, salt, etc.)

We really can probably help you narrow things down if you can do that-- or at least help you to know WHAT questions to ask of your doc-- if you keep very careful records and eat plain foods, carefully prepared (steaming or roasting in foil, etc. is a surefire way to minimize cross-contact risks in shared kitchens).

It's possible that you're facing not "food" allergies in the conventional sense, but reacting atypically to histamine in foods, or even with anaphylactoid responses to something like sulfites.  If your problems go away when you avoid processed foods entirely (or nearly so) then it seems highly probable that you are either dealing with a common food additive like that, or with a food allergy to a VERY ubiquitous and super-potent allergen.    What foods have you avoided and for how long-- and how assiduously?  That is, if you've avoided "wheat" have you still been eating sauces in restaurants, etc.?  If you've avoided nuts, have you also avoided most confectionery and chocolates?  If you've avoided sesame, have you also avoided bread, packaged pasta mixes, salad dressings, crackers, etc?  Have you ever had symptoms amplified (or provoked?) by beer or wine?  You mentioned OAS; which pollens are the problem?  Have you ever had problems eating your OAS offenders if they are cooked?  Have you got other allergies?  What to?  Have you had an on-going but low-level exposure to another allergen in the past year (maybe moving into a home with a pet)?  Have you been on acid-blockers? 


It is really miserable when one doesn't have access to adequate medical care.

And yes, only eating your fruits and veggies cooked is not that unusual.  Well, not among this community it isn't. 

One other thing that I encourage people to do-- if there is ANY chance that you are experiencing anxiety-related symptoms, get help for that.  Your mention of possible cardiac symptoms evaluated as "other" (panic attack?) raises the possibility.  Food allergies are going to push ALL of those buttons at once, and then you're in a real fix as you try to determine what is "real" and what is epi-worthy and what is a potential panic-attack.  Believe me, other people will doubt you plenty about the real deal-- you'll need to be absolutely CERTAIN that what you're experiencing isn't in your head to have the confidence to manage FA well.  Mental health help is pretty much never a bad idea when you have an extraordinary stressor in your life. 

If you can get the physician who saw you to agree, you might want to begin doing food challenges to some of the things that you RAST negative to; but I caution you again that a spoonful of peanut butter at home is NOT a good setup for a "food challenge" in someone with anaphylaxis history!!  Yes, the idea is to "see what happens," but ideally this is under some kind of medical guidance and supervision! 

   We can help you to find uncontaminated sources to challenge with so that you know that the results are meaningful.  A can of mixed nuts isn't a good way to challenge peanuts, for example, because it's contaminated with tree nuts.  On the other hand, a single tree nut purchased from a grower is uncontaminated by anything else.

  That will give you some foods that you can have confidence in, too, which is very helpful mentally as you work things out. 

[femb0t]

Hilariously enough, I didn't even think about the Eggbeaters thing.  See?  Told you I am terrible at this so far.

The chest pain was something I woke up to.  It lasted about 10 minutes and I was still half concious, but by the end of it I had gotten out of bed and ended up with a sore arm and a tingling hand/fingers.  I have absolutely no idea why it happened.

I've never tried any of the OAS foods cooked.  Can you cook a banana?  I'd be kind of interested in doing that.  If I remember right, the common protein found in a lot of the OAS stuff is profilin?  I think it was called that.

I never go into a meal with anxiety.  I did at first, but it was getting ridiculous.  Even with the piece of cake last night, I was so happy to eat it that I wasn't even thinking anything would happen to me.  I went with the idea that the tests said I'm fine, so why not?

I have a pollen allergy... but I don't think that's anywhere near uncommon?  Is that even classified as an allergy?  Also, I've been living in this house for about 2 1/2 years now, and the dogs are hypoallergenic... we've had them for a long time.  I'm not on acid-blockers.

After last night, I can promise I will not be eating peanut butter.  I'm still worn out from that fiasco.

With the processed vs. unprocessed foods, I can tell you that I'm a sucker for cheese and do eat the packaged stuff without a problem.  I've eaten a few packaged things without a problem.  Do you think that's still a mistake to do, as far as elimination is concerned?  I figured if I eat it and I'm okay, then what the hell.  And yes, I do realize how insanely stupid I just sounded.  I'm really not in a position to be thinking like that.  I know.

Also, I forgot to say this earlier:  I honestly do not know when the EpiPen should be used.  I don't know how bad I have to be in order to deem it necessary to use it.  It was never really explained to me by the first doctor, only prescribed.

My biggest problem in all of this:  I can't cook.    Not well, anyway.  I guess I need to start learning quickly. 

[CMdeux]

Yes, that is definitely going to be high on the list.  We have a couple of threads stickied at the top of this forum that discuss epinephrine usage. Here.
There is a plain English guide there that grades symptoms and will allow you to determine when you should use that Epipen.  Any two body systems, or any serious symptoms involving the airway or cardiovascular system mandate the use of Epi.

And the cooking thing?

Well, let's put it this way... I used to think that being 'domestic' meant that I lived in a house.   

Crockpot cooking is a pretty easy way to get started-- little technique to master there, and it's pretty hard to make stuff truly inedible as long as you more or less follow directions. 

Is packaged cheese bad?  Well, while you're keeping a food diary, it probably isn't the BEST idea just because it might be causing reactions that you've attributed to something else.  Unfortunately, the window for food allergy reactions is just long enough that often you must look at about a four hour window of time preceding the reaction-- and that is if this is an IgE mediated reaction.  For intolerance (non-IgE mediated) reactions, that window can be MUCH longer-- more like days.

How severe is your OAS?  If it's not too bad, then you could try cooked versions of the mildest offenders... banana pudding might be good, huh?  Believe it or not, OAS is actually because of your pollen allergies!  The food protein is one that your immune system is 'mistaking' for the pollen.  Yes, many of these proteins are in the profilin class of proteins-- but they definitely aren't all identical.  Many are not heat stable, so cooking makes them more readily tolerated.  But while you are doing an elimination diet probably isn't the time to try that.



 

[femb0t]

I tried to cook myself something tonight and the insanity that took place while I tried to do so resulted in me throwing everything away and not eating.

I need to move out before I can try and figure anything with my health out, I think.  I'm having too much thrown in my face.

Ever been threatened to get kicked out by your parent because you were in the kitchen when they wanted to be?  No, me either - until tonight.

Ever have the fact that you couldn't afford to have blood work done so your parent covered the cost thrown in your face?  I just did.

I had a barrage of insane things said to me in the last 45 minutes.  I don't understand it.  I don't think I'm ever going to understand it.

The environment I'm living in is so completely unstable.  Before I try any kind of elimination diet or even try to get to the bottom of what's wrong with me, I actually need to move.

I appreciate all of your help.  Everything you've told me has been far more informative than any doctor I've seen.  I just wish I had more support from my family - or any support, for that matter.

I'll be in touch once things in my home life are stabilized and I can do what I actually need to do.  I'm sorry if it seems like I've wasted your time, but I've saved all of what you told me to a Word file and will reference all of it in the future.

Also, the OAS isn't severe... it just leaves me with an itchy throat, lips & ears - also, my lips burn and swell a little bit.  I don't think that's too bad, but it was annoying enough for me to avoid things that left me feeling that way.

[yelloww]

Ok, take a deep breath! I'm sorry to hear about your living situation. A lot of members here (far too many probably) have had to walk away from parts of their families (including parents) because their family members did not take their allergies seriously.

If you look through our site, you will find people who have posted about how grandma has tried to slip foods into grandkids when they are visting, hide ingredients from people, have World War 3 rather than not serve certain foods at holiday functions, etc.

Would you be able to PM one of us so that we can find a reputable allergist in your area that can help you? We cover most geographical areas here and I'm sure we can find someone that would benefit you.

What is your pollen allergy to? Can someone post the cross-reactive website info for her? You may be eating foods that are triggering reactions because of your pollen allergies as well.

This is a lot to understand at once. Post your questions here and we will help you. Most of us have been at this a long time here now with either our children or ourselves, so there's a wealth of info that we can give you without you having to find it all yourself.

Can you list your pollen allergies and our OAS foods for us? That's at least somewhere to start.

Hang in there! 

[lakeswimr]

febBot--I recommend you go to your library and get 'The Peanut Allergy Answer Book' and 'Food Allergies for Dummies' or 'understanding and managing your child's food allergies' or 'how to care for your child with life threatening food allergies'.  I realize the book would be for YOU rather than a child but these books are great.  The library should have one/some that you can get via interlibrary loan.  If not, look on amazon for one of them or a used version.  Also, you should check out FAAN's website and kidswithfoodallergies.org website.   Both have lots of great info.   

I recommend you get completely strict with what you are eating and NOT eat out!  You can eat out once you know what to avoid.  Right now you have to get to 'baseline' which means no reactions.  Once you reach baseline you can more easily figure out what is causing these reactions.  I'd eat what CM recommended (was it CM?)  Things like chicken, plain veggies, rice, quinoa.  Avoid all known triggers.  Eating even these things in a restaurant is a risk  you don't need right now. 

I'm sorry  you mother is not being understanding.  I don't know what to recommend there.

I recommend keeping a food journal--you write down everything you eat, what time you eat, any symptoms and what time the symptoms started.  REActions start within minutes to about 30 minutes of eating usually and almost always within 45 minutes of eating and within 2 hours 99% of the time.  So, I would look carefully at the things eaten just before any reactions.

Lip swelling is serious and we are to epi for it.  I'm not saying what you should do but be careful! 

It is possible to have psychological reactions.  My son's allergist told us about doing a food challenge on someone where it was a double blind placebo so even the allergist didn't know whether the food was an allergen or not.  The person went into what seemed like anaphylaxis complete with struggling to breath, stomach pain, etc.  Then they were told it was the placebo, not the allergen and the 'reaction' suddenly vanished.  But lip swelling isn't something that is caused by your mind.  That's real.  HIves--=real.  etc.  You sound like it is possible you are worried and maybe some of your symptoms could be only in your mind.  I can't say.  But certainly some are very real if not all and you have to take this seriously and get to the bottom of things.  Once you know the causes you can avoid the trigger foods and maybe figure out how to eat out safely, too.  Until them be extra careful!

Take care!