Allergic to everything, Help! I'm desperate.

[martin0101001]

Hello,

My name is martin and i am new to this forum. so sorry if i posted this topic in the wrong section.

2 and a half years ago it all started... after i got in the hospital because of drug use. i took 3 XTC pills and ended up in the hospital with heart complaints and psychotic behavior.
so the next day i noticed i was very scared of everything and had a lot of panic attacks. Psychologist said i have a anxiety / panic disorder. but this is nothing compared to what came next.
Food allergies.

I'm now allergic to everything i try and everything the doctor tests in my blood. the only things i can eat safely are chicken, beef, rice and some fish.
I just cant go on like this, i'm hungry every day, whenever i do eat (even the safe foods) I get very dizzy, and i just cant get my eyes to focus on seeing something clear, its not really blurred vision its just that my eyes cant seem to adjust my lens to focus on the right distance. things that are far away are less of a problem.

I start feeling sicker and more tired every day i live and starting to lose hope for a somewhat better future. its not even that i crave for other foods i just want to be able to eat healthy and feel healthy.

After searching the internet for info i came along loads of stories of people who seem to have the same thing and all say that its probably candida or leaky gut syndrome.
Also i read about taking L-Glutamine, Pre/Pro -biotics, Quercetine, Zinc-Carnosine and some other stuff.

I dont really have the idea that these things will work but now i'm willing to try a lot.
Please i hope someone here can help me with some information on how to get rid of this or at least some suggestions on how to feel and / or be healthier.
I'm desperate and don't know how long i can take this.

Also i read something about heating certain foods clears the food of allergens? What foods are known to be safe when heated? i tried this with apple juice, cooked it for 5 mins but i got a upset stomach.

Anyway thanks in advance for some help / advice

-

[CMdeux]

My advice for you is this-- find a board certified allergist who can help you via a true specialization in food allergy.

The other thing to be open to is the idea that your problems might be something that only looks like food allergy.  There are a number of other conditions/disorders that can mimic food allergy.

Unfortunately, heating, probiotics, organic foods, candida, etc. etc. don't really address the matter of IgE-mediated food allergy.  There are only a few things (right now) which can. 

If you can hook up with a really GOOD allergist, it's possible that your situation would be severe enough to warrant general anti-IgE therapeutics, assuming that your IgE is what's driving your symptoms.

First step is to get a FOOD allergy specialist, though.   

[lakeswimr]

What type of reactions have you had to food? 

Testing can't diagnose a food allergy.  Both skin and blood testing has a very high false positive rate and a positive test does not mean a person is for sure allergic.  Many people test positive and are not allergic.  If you are avoiding any foods based only on test results those could easily be false positives.  A good allergist who knows food allergies well will help you sort out what you must avoid and what you might be able to add back into your diet.

You might be becoming nutrient deficient if you are only eating the foods you listed.  People need vitamins and nutrients that fruit and vegetables contain.  It is good you have protein sources.

Good luck!

[martin0101001]

I've been to an allergist and she did not know for sure what to do since i react to everything.
I've had skin tests and blood tests on which everything came out positive, just had the results back from another blood test 3 days ago, the only things i can now eat are beef, chicken and mushrooms.... I'm starving
Oh yea and coffee, this does help with being tired all the time.

The reactions i've had to food are mostly, nausea, low blood pressure, confusion, dizzy, dificulty breathing, blurred vision, rapid heart rate, tingly feeling at the back of my throat, pain in my digestive system, constipation and opposite..

so far things haven't been to life threatening but i cant work or go to school because of this, i'm always tired and cant eat. and it seems like my reactions to allergens are getting more dangerous every week.


Also i've been doing a lot of research on heating allergens, but so far the only thing i've found which appears to be safe are apples...
Please tell me there are more allergens that are safe to eat when heated 


Thanks 

[CMdeux]

Martin--

have you seen our Anaphylaxis Grading Chart??


I'm concerned that the symptoms you mention are being described as "non-life threatening" and they most assuredly are not in that category.  I'm VERY concerned for you that you may not have been getting great advice from your allergist.  Does s/he know the nature (specifically) of your symptoms??  Have you been prescribed injectable epinephrine?  (An EpiPen)

You really need to have an action plan-- and FOLLOW IT.  I'm worried for you.

[LinksEtc]

If you tell us your general geographic area, we might be able to help with some allergist recommendations.  You really want to find an allergist that can help you figure out what you are reacting to.

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

In addition to the grading chart, there is the FARE "Food Allergy & Anaphylaxis Emergency Care Plan" ... there is some language about "child" in there as it's often used for students, but your doc could make a few minor changes & sign the plan for you (if the doc agrees that the plan is appropriate for you). 

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

[lakeswimr]

The symptoms you listed are very serious and potentially life threatening.  Do you have epi pens?  Do you have an emergency plan?  Here is a sample emergency plan.  I like this much more than the grading chart.

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

As you can see, your reactions are typical anaphylactic reactions.  If your allergist has not given you this type of information you need to find a new allergist in my opinion.

Are you saying that everything you eat other than the small list of foods has made you have the symptoms you listed?  Are you avoiding anything based only on test results?  A positive test does not mean a person is allergic.  I test positive to lots of foods and I don't have any food allergies.  My child has food allergies but also tests positive to foods to which he is not allergic.  There is somewhere between a 55% to 86% false positive rate on testing so if you are avoiding some foods because a test showed you were "allergic" that alone is not reason enough to avoid a food.  Testing is supposed to be used with reaction history to diagnose a food allergy.

A good allergist will work with you to be sure you really need to avoid all those foods and won't use just testing to diagnose food allergies. 

There are some people who really do react to most foods or even all foods and to stay healthy they must drink hyperallergenic formula.  If you are going to have this type of restricted diet you probably need to look into this option because you are missing important nutrients.  Part of why you are not feeling well could be from being nutrient deficient. 

I hope you find a doctor who specializes in food allergies.  Not all allergists do.  And not all allergists who do are good allergists. 

Best wishes.

[CMdeux]

Martin, I would also like to give you some hope here-- I know that you must be very frightened and very discouraged thus far.

It is not at all unusual for adults with newly developed food allergies to super-potent allergens (usually nuts, seeds, or fish/shellfish, at least in adults) to find that they are reacting to seemingly EVERYTHING that they are eating-- and the natural conclusion is that they must be "becoming allergic to everything."

The truth is usually (slightly) less sinister and discouraging than that.  It's most likely (IMO based on the adults with adult-onset FA's that I've seen here over the years) that you are allergic to only a tiny handful of things-- maybe only ONE thing, in fact.

But:

• if you anaphylax, your body is on "high alert" for days, weeks or even in rare instances a month or more afterwards, and may be primed to see even things that you ordinarily are simply not allergic to... as threats. 
  


• some of the common adult-onset allergens are VERY VERY VERY potent-- the amounts required often boggle the mind in someone without experience living with food allergies.  A few hundred micrograms (that is, like a thousandth of an ounce) of something like sesame or cashew is enough to induce a life-threatening reaction in someone who is allergic and has a low threshold (as most people will in the wake of a major reaction). 

Anyway.  Assuming that fits your situation, it's very likely that as you (finally) narrow in on the precise answer to "what" you will find that your life improves immeasurably.  This is VERY unlikely to be your reality forever.  But you are going to need to find a great doctor to help you.   

[martin0101001]

Thanks for the advice everyone,

to answer some questions:
-Yes, i have an epi pen
-I live in the netherlands
-No i dont have an emergancy plan

And further i know my reactions have not been very life threatning so for, i still live
But my reactions are very severe, i'm glad i did not ever had to inject myself (Yet) with epi pen, but still its very hard to just live day by day super nauseous, confused, light headedness, anxiety and panic attacks etc.

also i did some more research and found this: http://en.wikipedia.org/wiki/Eosinophilic_gastroenteritis
Now i know not to jump to conclusions too quick, but after 3 years i'm kinda hoping to find something.
i do think i may actually have this. Any thoughts on this?

[martin0101001]

Yes i have an epi pen, and my allergist did tell me some things also that not all tests are 100% accurate, but when it comes to avoiding food, i kinda do that just based on the tests.
but in a few days, i suddenly notice i dont have as much pain in my stomach, or i feel less dizzy and confused. suddely i can breathe a little better so..  so far it has been for the better IMO.
For instance a few days back i got new results from my blood test and i'm also allergic now to rice, which i have eaten for 2 years every day now..
Stopped eating rice, no more pain, less nausea. so its not that much of progress but still, if it makes me sick. it cant be good.
Or am i very wrong there?

The symptoms you listed are very serious and potentially life threatening.  Do you have epi pens?  Do you have an emergency plan?  Here is a sample emergency plan.  I like this much more than the grading chart.

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

As you can see, your reactions are typical anaphylactic reactions.  If your allergist has not given you this type of information you need to find a new allergist in my opinion.

Are you saying that everything you eat other than the small list of foods has made you have the symptoms you listed?  Are you avoiding anything based only on test results?  A positive test does not mean a person is allergic.  I test positive to lots of foods and I don't have any food allergies.  My child has food allergies but also tests positive to foods to which he is not allergic.  There is somewhere between a 55% to 86% false positive rate on testing so if you are avoiding some foods because a test showed you were "allergic" that alone is not reason enough to avoid a food.  Testing is supposed to be used with reaction history to diagnose a food allergy.

A good allergist will work with you to be sure you really need to avoid all those foods and won't use just testing to diagnose food allergies. 

There are some people who really do react to most foods or even all foods and to stay healthy they must drink hyperallergenic formula.  If you are going to have this type of restricted diet you probably need to look into this option because you are missing important nutrients.  Part of why you are not feeling well could be from being nutrient deficient. 

I hope you find a doctor who specializes in food allergies.  Not all allergists do.  And not all allergists who do are good allergists. 

Best wishes.

[lakeswimr]

Any reaction that is systemic is potentially fatal.  Most all anaphylaxis self-resolves without the epi pen.  The problem is that once a reaction is systemic there is no way to tell if it is going to progress to life threatening or not.  I am not sure what you are thinking must happen for you to use the epi pen but in the USA if a person has a systemic reaction or any breathing trouble or any swelling of the tongue or mouth or throat then those are all epi pen moments.  Waiting for a person to be on death's door can mean waiting too long.  The epi pen works best when given right away.  Almost all food allergy fatalities are in cases where a person did not get the epi pen within the first 20 or 30 minutes.  Once anaphylaxis goes that long without the epi, the epi is much less likely to work and be able to halt the progression of anaphylaxis.

The fact that you have survived so far by not using it means very little about future reactions.  Most all fatalities in the news have very sad stories where the person's family is quoted saying that they never realized their allergies were so serious. 

Did you look at the emergency plan and the food allergy grading chart?

If you had EOE your symptoms would be primarily GI in nature (stomach pain in particular) from what I understand.  I don't think what you describe sounds like that but I don't know enough about your situation.

If you are allergic to a food, tiny, invisible to the naked eye amounts can cause a reaction in sensitive people so it could be you are eating foods that are cross contaminated with allergens making it seem as though you are allergic to more than you are.

The epi pen is not something to try to avoid.  It is very safe.  Getting the epi has about zero risk except in those with heart issues.  not getting the epi when you need it has the risk of a reaction progressing to a fatality. 

I don't know what the state of food allergy care is in your country.  I have seen some other countries not following the guidelines that American allergists use.  I tend to think that our country's allergists are many of the best in the world and I trust their recommendations.  They are based on scientific research and data. 

[lakeswimr]

You should not be testing foods unless there is a reason to suspect those particular foods are causing you a reaction.  It sounds like your doctor tested you for lots and lots of foods.  That's not recommended here.

Here is a good video about testing and accuracy of testing.

http://community.kidswithfoodallergies.org/blog/food-allergy-testing-what-you-need-to-know-video-and-resources

Here is another about epinepherine.

http://community.kidswithfoodallergies.org/blog/everything-you-need-to-know-about-epinephrine-video-and-resources