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Author Topic: I need a second opinion  (Read 481 times)

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Offline Pegasus

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I need a second opinion
« on: August 26, 2018, 06:15:40 PM »
Hi! For the first time in my life I have health insurance and was able to go to an allergist. I have been dealing with food problems for many years but have been dealing with it on my own. The allergist told me that I have a "sensitivity", not a true food allergy. I would like an opinion if that is a possibility or not.

The allergist did a skin prick test, which did not show anything. Right after the skin prick, before the lab even drew any blood, the allergist had already made her decision that I was not allergic to anything. Then I was told the blood test was negative too.

So a food trial is going to be scheduled soon. I'm supposed to bring in a piece of tofu about the size of my palm. I have never eaten any pure form of soy before. All if the stuff that seems to be the cause if my problem is either cross contamination or soy in other forms. You know, processed. The allergist told me the entire test should take about 2 hours. Does this seem right? How big of a piece should I start with?

She also told me that if I use vanicream and moisturizer then all of my problems should go away?? I find that hard to believe though. I feel she is not listening to my reaction history.

One of my first reactions I would get many years ago when this first started would be my fingers swelling up. She told me the vanicream will make this stop? It happened both from eating certain foods or from simply touching foods. Like some years ago I touched some cheese crackers and my fingers swelled up. Got fat like sausages and they crack and I cannot bend or use them. The swelling then starts to go down in about 4 or 5 days. The cracks are usually healed by day 7.

I also got it from sticky handles on shopping carts in supermarkets a few times. I think it was from young children eating candy. I have been free if the swollen fingers for a year or more now as I'm very careful what I touch.

I had to give up lots of foods to stop reactions. I'm basically eating paleo with added whole milk. Fruit, veggies, meat not soaked in any solutions, milk...a very simple diet.

So here are some other reactions I've had:

Catsup: very fast diarrhea - 5 or 10 minutes after eating. It included soybean oil and natural flavors.

Toothpaste: sore throat after 3 uses. It included soybean based glycerine. Otherwise it was a natural toothpaste.

All purpose flour: lots of itching! Before I could make stuff from it but then it started to make me itch like crazy. I found online some documents that said flour can contain soybeans.

Peanuts in the shells: before I could eat peanuts. But then they star to make me itch too! So I emailed the Fisher company and asked about soybeans. They replied that soybeans are mixed in with the peanuts when they arrive at the company and they shake them out. Then they sent me a coupon for peanuts!

Cherry pie: I got a tight throat once from a cherry pie. It went away by itself. I think this was anaphylaxis but I'm not 100 percent sure. At the time this had happened, many years ago, I had been on with flour and cherries are not a problem..so I think it was the "natural flavors". My allergist does not seem to believe it can go away by itself.

Ice cream cone: lip tingling. That was in may. First time I had lip tingling. I verified later the cone had a soy ingredient, which it never did before.

If I use the wrong bar if soap, my skin peeks off in layers. The allergist told me this is eczema. But two of my friends who have eczema told me I don't have eczema, as they do have it and knows what it looks like.

I think the finger swelling thing is called angioedema?? Can a "sensitivity" cause it??

I've had numerous other reactions over the years, like headaches, racing heart, post nasal drip, joint swelling...

Last Sunday I had a big hive on my face from something...

I am also allergic to bees and wood smoke. Sulfur gives me a racing heart.

I've never had an epi pen so I avoid, avoid, avoid! Maybe the allergist is confused as I never was to the ER?? But I avoid so much stuff.

I only know that when I avoid soy I also avoid reactions. Boxes printed with soy ink makes me itchy too. And I've had coughing spells before from soy ink newspaper pages being flipped.

So do i have an allergy?

Oh, I've also been getting an itchy face inside certain buildings, in lunch rooms or cafes. I don't know what causes it. A few times I have gotten it from boiling corn. One time I got the itchy face after the corn had already been eaten,
 before I got there so I didn't even know corn had been cooked! So I don't think its in my head. I don't think I'm allergic to corn although I haven't eaten any in years.

I've only cut food out when it started to cause problems, like the bad itching. The itching is bad enough that I start bleeding from scratching.

My battery is running low. Posting with my phone.

So is this a food allergy?! Is it something else?? Because I don't understand why the tests came back negative? Or is all if this in my head?! But then why do my fingers swelled? Why does soap peel skin off my fingers? Why the intense itching?? I've had other reactions too, including one where I felt like puking and got dizzy. That was from homemade pancakes fried in soybean oil. That was the incident that made me realize I had a soy allergy, esp after I realized everything in my pantry contained various forms of soy.

I have anxiety / concern over the food trial. As I said I never ate any pure soy. All has been in other forms in preprocessed food... glycerine, soy oil, natural flavors, etc.

Thanks!

Offline momma2boys

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Re: I need a second opinion
« Reply #1 on: August 26, 2018, 08:48:59 PM »
Hello and welcome! If this challenge scares you donít do it. Get a second opinion. Where is the challenge to take place? At a hospital?
Iím a little confused as to what Vanicream is supposed to do to stop these reactions 🤔 ??!!
peanut, treenut, sesame
Northeast, US

Offline Pegasus

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Re: I need a second opinion
« Reply #2 on: August 27, 2018, 09:24:16 AM »
The allergist said that if the vanicream heals the skin then the reactions will go away. But I dont believe that. Because I had the swollen fingers reactions since around 2000 and my skin was normal looking then. I did not have the peeling skin then, so logically the skin peeling can't be causing it. I tried to tell her that but she does not listen.

The test will be in the allergy clinic. The hospital is across the street.

I have to do the test because I need my allergy documented. Since the blood test and skin prick came back negative, that only leaves the food trial. There is no other way to prove it.

I also have problems with chemicals, fumes and seem to react to certain perfumes. It seems as the years go by I react to more stuff.

The allergist told me she doubts if im allergic to soy. But then I'm wondering why does everything seem to point to soy? Because if it's not soy, then what is causing all of these reactions? They just started upon day out of nowhere.

Like at first when I started to get the swollen fingers with cracks, I thought it was dry skin. So I was sitting in front of the tv in the evenings smearing bottles of lotion on my hands in an effort to stop it. But it never worked. After awhile I realized it was due to food but that took over a year to figure it out. Then I thought it was only if I ate the food...but I found out just touching it did the same thing!

I have always told everyone I was allergic to soy, but the test results confuse me. So I have to constantly watch what others are touching...

When I get the itchy face in lunchroom or cafe, I should add I'm not eating anything. I don't even touch the table. I'm only sitting on a chair. One time I timed it. The itching started up about 6 minutes after I sat down. I think I'm reacting to something in the air but I don't know what it is. That same day I also had nasal symptoms, my eye feels funny (it's very hard to describe but it sort of feels like something between my eye lid and the eye...it's a very annoying sensation), a mild headache, pressure on the back of my head and I ended up with a blocked ear. I generally get the odd eye feeling with the itchy face.

I also once got the itchy face and itchy arms outside when I was on the walking trail by the lake. I walk there all the time. There was a couple in front of me with foreign British accents. When I got near them the itching started up and it continued until I was past them..had to walk about 10 minutes before it went away. First time I got it outside. I walk there all the time do I know it's not plants or anything. I don't have any seasonal allergies.

I tine I got a reaction from a cleaning liquid in a building. They were cleaning the floors with the stuff. My eyes watered all night from the fumes from this stuff and then in the morning someone asked me "what happened to your face? You look like someone beat you up." I guess the fumes made part of my face swell.

I don't know if there is another allergist who will take my insurance, so I might be stuck with this one.

Anyway, I presume the test will be in the allergist sweet. They gave a large area on the third floor if a building across from the main hospital. She said she will have extra staff on hand. They did not set a date yet, as they need to do it on a day when they have extra staff there.

But doesn't 2 hours seem like a short time period to do the test? Shouldn't you start with a super tiny amount? And then slowly work your way up? I know I read with peanuts it's a fraction of a peanut, like dust almost. So how much of a piece of tofu would be equivalent to a fraction of a soybean?? How do you measure it?

She said that they would observe me for 2 hours and then I could leave. I hope she doesn't expect me to eat that whole hunk in one go!

Most of the questions on her new clients form was about reactions to breathing stuff, smells, etc.  Very little seemed to apply to food allergy or digestion. So I don't know...

Oh, I showed her the picture of the floor cleaner I had reacted to (as I had managed to get a photo of the bottle) as I had thought she would ) could find out what was in it I was reacting to, but she just took a glance at it and said that it was a bunch of toxic chemicals. Yet other people in the area, it doesn't bother them at all!

So I don't know. Can allergy tests be wrong?

I got these problems as an adult. In my 30s.

When I was a kid about 4 or 5, I got stung by a bee (or yellow jacket or wasp...don't really remember what it was) on my hand and my arm swelled up to my elbow. My mom didn't know how to treat it so she just took me home and had me soak it in a bucket of cold water, like you do for a sprained ankle. Eventually it went down.

As a kid, we never ate soy. Well any pure soy. I don't know if that matters or not. We ate margarine that was soybean oil based. But we never ate tofu or soy sauce or anything like that.

Is the test supposed to be done in a hospital??

And do I do it on an empty stomach or should I eat something for breakfast??

Thanks for any information or advice you can give.

My blood pressure is normal by the way. Not on any meds. Only real problem I have is the "allergy" or whatever it is. My mom also had the same problem with it at the same time. So we both got it around the same time. She was allergic to olives since she was 16. She would get itchy bumps from olive juice at a company she worked at, so they had to move her to a different department. Away from olives.


Offline GoingNuts

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Re: I need a second opinion
« Reply #3 on: August 27, 2018, 06:04:04 PM »
Hi Pegasus, and welcome!

Our old allergist used to say that he doesn't treat test results, he treats people - and that reaction history trumps test results.

Is there any way you could get this done in the hospital, perhaps as a blind test - where you don't know whether you are being offered the allergen or something else?  I think your anxiety (justifiable) might make the results hard to read.

BTW, are you in the U.S, Canada or Europe?
"Speak out against the madness" - David Crosby
N.E. US

Offline PurpleCat

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Re: I need a second opinion
« Reply #4 on: August 28, 2018, 03:00:14 PM »
My daughter has done quite a few food challenges.  Reactions trump testing, so it is quite possible that the only way to determine if soy is causing your issues is with a food challenge.

All of her challenges were done in an allergist's office.  Our allergist is well versed in food allergies.  We have one nurse that stays around the whole time.  A second nurse who checks in with each new dose and the allergist also checks in 2 or 3 times and then does the final skin, breathing, etc checks.  Our testing has taken 2 - 4 hours depending on the food and how much was needed to be a true pass.

No Benedryl or other histamine blocker for I forget how many days before.  No breakfast the morning of the test.

First complete vitals - including blood pressure, oxygen levels, heart, lungs/asthma check and skin check.  A tiny amount like an eighth of a teaspoon is eaten.  15 minutes later, all vitals, breathing, and skin checked again and a slightly bigger dose.  This continues as long as there are no symptoms.  There were only a couple of things my daughter had trouble eating due to the taste.  She was allowed to wash them down with water.  She was also offered some salt or pepper for egg but she declined.  Usually her last dose was about 2 tablespoons.

It is surreal to watch her eat something she was allergic to.  But knowing the results is life changing.  It is great when we have one less food to avoid.

You might also consider seeing a dermatologist for your skin issues.  I have some skin sensitivities to undetermined "chemicals" (as in I don't chose to get tested) on my fingers and I have a steroid cream I can use at night to heal them.  Or I can wear gloves (which I hate to do) when using the offending things.  My dermatologist suggests she thinks it is the unknown inert ingredients rather than the actual chemicals causing my issues and has offered to send me to an allergist.  After what my daughter lives with, in that perspective, I just live with it.  Perhaps I might revisit it when the kids are no longer running my schedule and free time!   ;D

Offline Pegasus

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Re: I need a second opinion
« Reply #5 on: September 01, 2018, 09:19:08 AM »
I am in the USA, in Wisconsin. The allergy test has been set for September 12. I am hoping so can go with me. I'm also hoping they have an epi pen at the allergist office. I don't know if they do or not. I am very new to going to doctors. When I was a kid I never went to any. My family never went to doctors.

I don't know if the allergist would be willing to do the test in the hospital. She would probably think I'm being paranoid or something. I'm not used to speaking up about lots of stuff. And then sometimes when I do it seems to backfire on me and then the other person gets mad, even though I was polite.  It also seems a lot of people don't be I have a problem with food. They seem to think I'm making it all up and that it's in my head. The negative test results only seen to prove their point. But I still can't touch or eat a lot of stuff. I can't stand the itching that can go on for 3 days. It drives me nuts. I scratch my skin off. I literally scratch sores and raw skin on myself. Then it keeps me up all night too and I may pass out in the early morning hours, like 5 am only having to get up at 7.

I don't use antihistamines or anything. I can't. I don't trust the ingredients. I just avoid stuff. If i get the severe itching I just suffer until it goes away by itself. Then I avoid that thing.

Is it possible the allergy is still forming? Is that why it's not on the blood test?

Are there other diseases that mimic food allergies, that can cause these symptoms? These are some of the various symptoms I've had over the years: swelling, intense itching, joint pain, post nasal drip, sore throat, opposite reaction from NyQuil...was supposed to make me sleepy but it made me wide awake, headache, insomnia, tight throat, skin rash, blocked ear, nausea, diarrhea, foggy brain, dizzy, etc. I might be forgetting a few as there have been so many different types. Oh, chills too. I had gotten chills from someone hairspray and at had not even felt cold at the time!

I've gotten painful rash from using the soap in public bathrooms and also from touching new clothes in some stores. The thing with new clothes does not happen all the time. I think it may be due to that "allergy cup" one hears about? The rashes always appear on my upper thighs. I don't know why. It also always seems to happen in autumn. But as far as I know i don't have any seasonal allergies but I have a problem with wood smoke.

I've gotten rashes and peeling skin from styrofoam cups. That appears on my hands.

I have very good self control. I don't try to cheat. The itching is not worth eating something. You know what I mean?

Can one be allergic to pesticides, or fertilizer? What about additives? Do stores sell non organic tofu? Because the soy that would be found in most product, I'm assuming it's not organic. So I want the test to be as close to the stuff I've been being exposed to in various products over the years. Or does it not matter?

And if it's not soy, then how do I find out what is causing all of these issues?? The allergist does not seem willing to look into it. She said she could test me for chemicals with skin patch.

But over the last few years, when I have reacted to stuff and have emailed the companies and asked them about soy, they all have answered that yes, they have used soy. So I hope it's the cause of my problems. Because if it's not, I don't know what it is then. A few companies even said they had used soybeans in the soil as fertilizer. Then I ate the vegetable and was itching like crazy! It was a root vegetables. So yes, I even have to be emailing produce companies.
😞

I can eat the vegetable without problem from certain companies. So it's not the vegetable itself. It's something on the outside.

I've also gotten rashes on my arms from raw fruit. So I learn to buy only from certain companies. Once again seems to be some spray or something on the outside.

All of this makes eating very hard.

I will see if I can get someone to go with me that day. And thanks for explaining how they do the allergy test. I will know what they should be doing then.