Wednesday 9 April 2014

What is the Solution??!!


I am currently in Singapore as I had an appointment with an allergist/immunologist in Tan Tock Sing Hospital on Monday.

I shall call him Dr. B.

It was an exceptionally, extremely interesting appointment as he does not believe that I have a salicylate sensitivity. Instead he believes that the anaphylaxis was triggered by peanuts which were in the soup which I had boiled. (Those of you who follow my blog will know that I had my first anaphylaxis after drinking home-boiled peanut soup 5 years ago). I did tell him that the worst wasn't after the peanut soup though my throat was closing up, my tongue and lips swelled up and my BP dropped and they had to give me oxygen. The worst anaphylactic attack where I went into shock was a result of drinking Joel's Isomil milk. Doctor B said that it could be a carry-over reaction. It happens. OR Joel's milk had traces of peanuts in it as the factory processes nuts too.

Anyway, I had blood drawn for peanut test and also for mast cells degranulation. 

The doctor also told me that the IgE blood tests that were done immediately after the anaphylaxis attacks were inaccurate as they were done too soon after the attacks. When the body has had an anaphylaxis, the blood tests that was done immediately will either give a false positive or negative. It needs a period of SIX WEEKS after an anaphylaxis attack to get an accurate reading. How the hell was I supposed to know?! He also said based on all the blood tests that were done, he can tell that the doctors were all grasping in the dark trying to find out what was wrong with me.

Doctor B also asked me to tell him the history of my health in great detail while he busily typed everything into the computer. 

Unfortunately, there are no tests in the world for all these chemicals or food sensitivities. He said the ALCAT test is bullshit! Haha! He said that if we eat a particular food in large amounts, it will turn up in large amounts in our blood. So that ALCAT test is totally inaccurate. 

Dr.B said that somewhere along the line, I had become hypersensitive after the anaphylaxis attack. He said it happens. I have food intolerance and smell sensitivities too. 

Dr. B said that at some point of time, I would have to re-introduce foods into my system as I can't go on living like this.

That being said, he told me that I have to avoid herbs, spices as they can trigger a reaction. 

It never sank into my brain all this while that I already had a drug allergy when I was small. My mum told me that I was allergic to a pain killer called 'Viseralgin' when I was a small child. I remember carrying a card with me at all times when I was a kid in primary school. Dr. B said that it's all under the NSAIDs groups. 

He said that currently I do not have any medication to take in the event of a high fever as all the fever medication that are available are under the Cox-1 inhibitor which I am allergic to. There is the Cox-2 inhibitor which Celebrex and Arcoxia belong to. I'm allergic to Celebrex. This hospital is trained to conduct challenge tests for Arcoxia. Though I am able to take Tramadol which belongs to the opioid group, Tramadol does not function as a fever reduction medication. It only functions as a pain killer. The Arcoxia challenge test is done over a period of one day. The patient is given a small dose over a period of about 3 hours which begins at 8am and will continue to be under observation until 5pm. Arcoxia peaks during the early part of the test. If the patient is unable to take it he/she will react during the morning and not later as the peak will slowly descends after it reaches its height. I have not come to a decision on whether I would want to do this challenge test or not.

After speaking to him in detail, he sent me to see an allergist nurse. She is a lady with so much information inside her brain concerning allergy immunology. I was sent to her so that they could educate me on allergy and much more. 

From her I learnt that there are 3 areas where our immune system could have a 'reaction'. The first would be a 'TRUE ALLERGY'. The second is 'FOOD INTOLERANCE'. And the third 'PHARMALOGICAL EFFECT'. There is also the 'virus effect'. More on that later. 

The 'TRUE ALLERGY' is where even a minute amount of allergen that the person is allergic to can kill him/her. If the person is allergic, there is no such thing as giving him/her 'a little bit of it won't kill you'. It will.

The 'FOOD INTOLERANCE' is where the body cannot produce enough of the enzymes to digest the particular food product. An example would be lactose intolerance. The digestive system is unable to produce lactase which breaks down lactose into glucose and galactose. Thus, bloating, abdominal pain, diarrheoa, vomitting can happen after ingesting large amounts of lactose. This does not kill you although it can make you sick. 

The 'PHARMALOGICAL EFFECT' would be the body reacting to enzymes that are released by the body to digest or breakdown the food products that we consume! An example would be the 'Chinese Food Syndrome'. 

When the body consumes MSG, which is basically salt as in sodium, (and the meal is loaded with MSG), the body will retain water. This causes a strain on the heart and the kidneys. And when there is an extreme spike in sodium, there will be a drastic drop in potassium. The body will try to cling into the potassium. The thing is sodium and potassium come hand-in-hand. Thus, the body will go all out in a craze mode trying to balance its system and you will get palpitations, dizziness, migraines, etc as side effects!

The 'VIRUS FACTOR' is such that sometimes during sickness, hives or swollen eyes are not an allergy reaction to the medication that have been consumed but rather an effect which was caused by the virus!

Dr. B and Mdm Allergist Nurse have given me a diary which is specifically for 'reactions'. It is called a 'Reaction Diary'. I used to keep a food diary. This diary however is only for reactions. And I have to note down everything I used, places that I went to, ate, touched, inhaled, ingredients or brands of products that were used, etc 12 hours prior to the reactions. And I have to write in detail to how my reactions are. From there I guess they will be able to narrow down my triggers and what categories the reactions are from.

Mdm Allergist Nurse also taught me that whenever I have a reaction, in order to abort or stop the reaction from progressing to a full-blown attack, puriton or clorphenamine tablet is to be taken. Not Xyzal. Not Zrytec. Why? Because it is a fast acting anti-histamine. It stops the body from releasing other agents which could progress to an anaphylactic attack. No one ever explained this to me and I never realised it to research about it. At the same time, she also said that at times the anti-histamine is not strong enough to prevent an anaphylaxis. The Epi-Pen is the next course of action.  Mdm Nurse also advised me to keep my Epi-Pens together with the Puriton tablets together in a same pouch. 

I asked Mdm Nurse to whether if there is a possibility of having an allergy reaction to things that we are not when we are well when we fall ill. She said that does not happen. BUT she said that if we have been allergic or sensitive to something when we are well, when we are sick the reaction is multiplied at a larger magnitude! 

Mdm Nurse also taught me how to reintroduce food back into my life/system. It is also called a challenge test. Every single new food that is to be re-introduced will be done in a span of two weeks. The first day would be having a teaspoon amount. It would only involve chewing, and chewing only. After chewing, I would need to spit it out and rinse my mouth with water. And then I sit and wait. If I have no reaction as in mouth tingling or swelling or any adverse reactions which I am accustomed to, I can proceed to the next day. The next day would be swallowing the same teaspoon amount. And this is done till the 7th day when it reaches the size of ONE PORTION. During the second week, I would need to ingest ONE PORTION of the new food everyday until day 14! If I do not react during that time, I am good to go with that food. That being said, this is risky and the Epi-Pen and the Puriton must be on standby. Mdm nurse also advice to steer clear of sauces and flavouring as they contain 1001 different ingredients and that could confuse the outcome of the challenge test. I would not know which was the trigger if I do react. Was it the sauce or the pork/turkey/beef? She said to cook the food in the simplest manner. Salt, sugar, pepper. Nothing else. The plainer/simpler it is, the better. And the accompanying foods must be the ones that I have been eating all these 5 years with no reaction. Basically, it's keep it simple.

Mdm Nurse also told me to never drink herbs or all those Chinese concoction herbal drinks as many contain NSAIDs which unscrupulous business people add. I told her I have not drank a single sip of any Chinese herbal drink since the anaphylactic attack. And I do not see any sinsehs. I basically know what I am allowed and not allowed to do. I mean I survived for 5 years!

I have to come back in July to see Dr.B. As of now I have no answers and my mind is still in the process of digesting all the information that have been given to me. I will still stick to my diet of 5 years and research more about all that have been told to me. 

As of now, I am still 'answer-less'! But there is hope!!!






8 comments:

  1. Good luck! Hope is always good.

    I lost all confidence when she told you to cook with salt, pepper and sugar....that's NOT "plain".

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    1. Asian cooking is full of sauces. It's either this sauce or that sauce. White sauce. Black sauce. Shrimp paste. Wochester sauce. Oyster sauce. Chicken marinade sauce. It's sauces and sauces and sauces. So when we say cook a certain dish in a plain style, it means just salt, sugar, pepper. It can be with only salt. Or sugar, salt and pepper.

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    2. It might be less evil than the sauces, but cooking with salt and sugar is still not plain and incredibly unhealthy. It's just asking for trouble.

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    3. With all due respect, many people need salt due to adrenal insufficiency, and also sugar (or at least some form of carbohydrates) also, due to adrenal insufficiency. If one doesn't get enough in the diet, then the adrenals are forced to put out more cortisol to break down muscle to convert it to glucose for energy.

      I was extremely skeptical when I first heard this, but as I was heading toward being bedridden I figured, why not give it a try. It saved my life. Whole sugar is not poison, no matter what the paleo-faddists try to claim.

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  2. GOod luck Evelyn. I REALLY like their advice on how to trial foods. I do a less scientific version sniffing the food and holding it in my mouth, but usually swallow a tiny amount if the mouth goes ok. Then I wait 24 hours, have a bit more the next day, and if still good I tend to eat it everyday as I'm so excited to have it. I wonder if I didn't even realize but that was helping me. Let us know how it goes.

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    1. Thanks Ana. Yes, will keep all of you updated.

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    2. Hi again Evelyn,

      The main reasons I'm commenting is that I see myself in your blog posts, and wanted to mention a possible explanation for your possible reaction to salicylates, if that is indeed what you're reacting to. I note above that your tests came back normal even with this new doctor, but he told you he thought -- thought -- that you were sensitive to salicylates.

      After reading your "death" story -- the story about eating the peanut soup three times in one day, and all the antihistamines they had to give you to save your life, here is my explanation that MAY explain why you reacted, and why you came to believe the salicylates were the problem, instead of histamine.

      Salicylates and benzoates are phenolic compounds. Many if not most salicylate foods contain these benzoate compounds as well. Also some high-sal foods are high in sulfites.

      It has been shown that both benzoates and sulfites release histamine in the body, even though the foods don't contain histamine. According to Dr. Janice Joneja:

      "Berries tend to be high in benzoates. Natural benzoates. Benzoates release histamine. And so certain berries are higher in benzoates and so release more histamine."

      And as you know, berries are very high in salicylates.

      The fact that you had such extreme reactions on that 'death' day, and were treated with antihistamines, plus, the fact that you were eating LEFTOVERS, which increases the histamine content of any food, suggests that perhaps all along you've been dealing with a histamine buildup and/or intolerance.

      Antihistamines only block histamine from reaching the histamine receptors in the body. They don't LOWER histamine levels. The way to do that is to increase your levels of diamine oxidase, and also improve methylation. Both help lower histamine levels so that you can eat almost anything (eventually), with no reaction.

      I hope you find this helpful. I'm definitely not saying you're wrong and I'm right, but a google search will turn up a lot of information that may help back up my hypothesis.

      If it is indeed a salicylate intolerance, then glycine, sodium bicarbonate, and calcium-d-glucarate should help lower your salicylate burden so you can eat more foods with normal salicylate levels.

      Best of luck!

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    3. Thanks Melanie. Will definitely read up on what you've written.

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