Not signed in (Sign In)



Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

Welcome Guest!
Want to take part in these discussions? If you have an account, sign in now.
If you don't have an account, apply for one now.
    • CommentAuthorMaureen
    • CommentTimeMay 10th 2007
     
    Hello again everyone,I hope you are all having a great day,I am still feeling wonderfull and attack free from my SS,I thought I would just mention the conversation I had with my doctor.
    The first thing he said to me was that SS is an intolerance rather than an allergy,and because of that its hard to detect what causes the attack,he went on to explain that I could be eating a certain foods for maybe 4 weeks and have no reaction,and on the next day have a bad attack,and think it cant be that food as I have eaten it for last 4 weeks and not had any problems,he then went on to explain its the build up of salicylates in the system that causes the outbreak,and by sticking to the neg to low SS its unlikely you will get an attack.I have been able to prove this with now being 12 weeks attack free.
    The other thing that amazed me was that this SS doesnt show up in the blood tests done for allergies,the only result I got was wheat products could be causing the itching ,hives etc.but I tried cutting all of that out and still got bad attacks of it all.I am so happy now that I feel in control of the SS and always keep to the neg and low list,I also try to vary my meals so as not to eat same every day.
    I wish you all great success and pray you will be feeling so much better soon.
    Maureen
    • CommentAuthorBeth
    • CommentTimeMay 10th 2007
     
    Maureen - Good advice! And I'm so glad to hear that your doctor told you this! It is very important to recognize this difference and learn how to handle your SS for what it is a dose related intolerance/sensitivity and not an allergy. Thanks for sharing this! Glad to hear that you are doing so well!! :)
    • CommentAuthorBuFfY
    • CommentTimeMay 26th 2007
     
    You are lucky! My allergy specialist was basically useless. Everything I have learnt about it is through my own research! He gave me a list of what I can't eat, said nothing about what I can eat! And said, try this for two weeks. I went back two weeks later and he saw me for seriously 5 minutes! He didn't even look at my skin to see if I was better!!! All this after I waited an hour to see him!!!
    I have another appointment in a few weeks, and I will give him a bit of a talking to because I feel that I actually need some support from him, and seen as I am paying him SO much I would like to actually get something out of it!!!
    • CommentAuthorTEDDY
    • CommentTimeMay 27th 2007
     
    Definitely Buffy

    As you say you are 'paying' for the privilege supposedly of their advice and expertise. Demand it. I am very much a beleiver in saying what I think and it is your body and your right to know what is going on. Good for you. You have to stand up to people in this World. Unfortunately some people, including doctors, think they are a cut above, and they are not, they are exactly the same as you or I, doing a job, and getting paid to do that job, so hope on your next appointment you get a bit more out of it.

    Take care

    Teddy
    • CommentAuthorRandi
    • CommentTimeJun 5th 2007
     
    Hi all - I just read all your comments and I guess I'm about to find out for myself as well - I have my first appointment with an allergist tomorrow. I chose an allergist who specializes in food allergies so hopefully that will help. I've been told the testing will take three appointments total. I'll let you all know how it goes...
    • CommentAuthorBeth
    • CommentTimeJun 6th 2007
     
    Randi - just remember that sensitivities or intollerances don't show up on allergy tests so just because the test says you aren't allergic to something doesn't mean that you won't react to it.
    • CommentAuthorTEDDY
    • CommentTimeJun 6th 2007
     
    True what Beth said Randi

    I have multiple allergies and intolerances. However banana came up clear on the allergy test yet I react badly to them. I just recently tried a bit of banana and mixed it with natural yoghurt to see what happened. This time I had a rash immediately but didnt end up really ill like previously so I will try one again soon and just record what happens. However as I have been diagnosed as allergic to sodium metabisulphite the consultant told me it is most probably me reacting to the actual skin of the banana which are apparently sprayed due to some sort of spiders? they spray them with sulphites which I didnt know so it is most probably not the actual banana but the skin!

    So Beth is entirley correct in saying that sensitivities and intolerances do not show up on these tests.

    Hope you get on okay Randi and see how your tests go.

    Take care

    Teddy
    • CommentAuthorRandi
    • CommentTimeJun 6th 2007
     
    A quick note to you all as I'm not feeling well at all after the allergy tests: You can all say "I told you so". My first round of allergy tests included 64 foods and they ALL came up NEGATIVE. The list included quite a few definite triggers of mine and so I now clearly understand the difference between an allergy and an intolerance. The funny part was I came up very allergic to quite a few other breathable things and they were very concerned. ( I could care less of course at that point.) So I will continue later in the month with the tests just to know about myself and what other allergies I have; and may even take whatever measures are suggested for these allergies.

    I'm kind of "down" today as the past three days my elimination diet has been difficult - I seem to keep using one or another food that makes me ill. I guess it all just takes time. I definitely cannot eat everything that is supposedly low in salacylics. bye for now...
    Randi
    • CommentAuthorRita
    • CommentTimeJun 6th 2007
     
    Hi Randi. I understand your concern about limiting your diet because we all need to be eating a balanced diet. BUT.......As I have mentioned before, unless you do a meat/rice elimination diet for at LEAST three days, your going to have a hard time up ahead of you. I would encourage you to start there. Then work with a nutritionist to help you BALANCE your diet.
    • CommentAuthorTEDDY
    • CommentTimeJun 7th 2007
     
    Hi Randi

    Sorry to hear you are not feeling too good after your tests. Remember to be very careful with your allergies and that you will require an epipen to carry with you in case of anaphylactic shock.

    I have multiple allergies and intolerances and I think my intolerances are just as serious as my allergy. The difference is with my allergies I realise this can cause anaphylaxis but although I cannot suffer anaphylaxis with my intolerances they actually cause me just as much if not more problems than my allergies and are probably more difficult to cope with and handle including my ss. As Rita says it has to be adhered to strictly if we want it to work and I will do everything I can and eat exactly what I am told just to feel well. It is that simple really. For me it is as I just want to be pain free and feel 'normal' again.

    Remember its not a case of maybe taking measures relating to allergies it is a life or death situation. You have to carry your epipen and administer it when required - it saves your life!!!!!!

    Take care and hope you are feeling better soon.

    Teddy
    • CommentAuthorBeth
    • CommentTimeJun 7th 2007
     
    actually teddy, from what I've read in rare cases anaphylaxis can be caused by intollerances/sensitivities, not just allergies. Sorry that your testing wasn't as affirming as you would like - I also test negatively to foods but know I react to them. As there is currently no test for sensitivities/intollerances the best option is always to limit your diet as much as possible for a short period of time to minimize the variables and then add things back in so that you know exactly what your body uniquely reacts to.
    • CommentAuthorTEDDY
    • CommentTimeJun 7th 2007
     
    Hi again Beth

    I didnt know that intolerances or sensitivities can cause anaphylaxis and all the professionals I have dealt with have never mentioned this. If anaphylaxis can be caused by intolerances and sensitivities then people should be issued with epipens then as the consequences of anaphylactic shock doesnt bear thinking about as time is of the essence in the case of anaphylactic shock as we all know.
    • CommentAuthorRita
    • CommentTimeJun 7th 2007
     
    I believe the actual term is anaphalactoid when it is related to sensitivities/intolerances. Yes, you can go into anaphalactoid shock, as I have been on the very verge before. Throat closing up and all. Scary stuff.
    • CommentAuthorTEDDY
    • CommentTimeJun 7th 2007
     
    That is scary Rita and Beth. Its bad enough going into anaphylactic shock and having my epipen for my allergies but didnt even consider it could happen with my intolerances and sensitivities. I will need to be careful of that and thanks for the warning. I know exactly what you mean about the scary feeling when your throat closes over as thats exactly symptoms of anaphylaxis with my latex allergy. It just feels as if someone was trying to strangle me and I couldnt breathe. Not a nice feeling at all. Scary is the right word.
    • CommentAuthorAnna
    • CommentTimeJun 13th 2007
     
    I have had two occasions where my throat has swelled and one when my tongue did due to intolerances. Interestingly enough, I realised later on when reflecting on the causes that the three instances were preceeded by acute stress sometime in the 24hrs beforehand. I have carried an epi-pen for two years but never used it (just had it close on hand when attacks happened). I don't carry one anymore as my symptoms have decreased so much and I have changed the way I handle stress and minimised it in my life so feel more in control of it all.

    My allergy specialist (who was ok, just skeptical at times and a gloomy outlook on life) said that I didn't need an epi-pen as 'no one had ever died from food intolerance reactions'. I have read elsewhere that people have. I think that the reaction is much slower and there isn't the typical drop in blood pressure etc. so it is different to the classic allergic anaphalactic response. That doesn't make it any less serious though. If it makes you feel better to carry a pen - then carry one. It meant for me that I could sleep at night, so was worth it when I was scared of waking up unable to breathe and alert my husband in time to call someone (two of my reactions occured in the classic 'allergy hour' - 3-4am).

    Back to the original topic: Allergic responses occur within 1/2 an hour and are not dose related. They are a function of your immune system - and this is what they test when doing an 'allergy test': your immune system response to substances.

    Intolerance responses can occur from 20 min to up to 48 hrs later and are completely dose related. They are not related directly to your immune system. As far as I can ascertain, no one is sure exactly how they occur but a lot of literature points to the liver not being able to process sals and toxins as efficiently. The only test that everyone agrees on for food intolerances is the elimination diet (eliminating everything then testing sals, amines, glutamates etc one by one).
    • CommentAuthorRandi
    • CommentTimeJun 18th 2007
     
    Hi all,
    Have any of you heard of the Alcat test? Please see alcat.com. I am going to phone them tomorrow to get more information. They seem to indicate being able to test for intolerances vs. the standard food allergy testing...Please let me know if any of you have had this testing done and your experiences.
    thanks,
    Randi
    • CommentAuthorMaureen
    • CommentTimeJun 21st 2007
     
    Hi everyone,
    I am finally back online after my PC crashed,I have missed being able to visit and read the posts.
    I have just read back over the postings and it was the Anaphylaxis shock that were the most frightening thing, and I also noticed that some attacks didnt occurr for at least 4-5 hours after I had eaten the suspected food.I am still attack free, and staying with the neg/low S list of foods and feeling so much better.
    I try to vary what I eat each day and make meals only with allowed ingredients.my main allergic reactions were Hives Urticuria,and Anaphylaxis ,I wasnt allowed to have the epipen,but was told to call Ambulance immediatly and they gave me an Adrenalin injection.and also antihistimine.
    I hope all of you can solve your problems and get to be happier and healthy soon.
    God Bless.
    Maureen
    • CommentAuthorcjeanbrown
    • CommentTimeJun 16th 2009
     
    I also had my throat swell almost to the point of using my pen but now As I am careful about how much sals I eat,I usually get excema or asthma or hives now like a warning.I definitely think finding your individual tolerance is the key.Jean
    • CommentAuthorTeefee61
    • CommentTimeJun 17th 2009
     
    Yes, for all of us! But it also changes with time, stress, hormones, and age.

    Tx
    • CommentAuthorAijca
    • CommentTimeJul 30th 2012
     
    <p>Dresses Trends For 2011 Style Bustier gowns continue to become ?in but they re becoming aped track of sheer or illusion cleavage lines or back sights <a href=http://www.wiredress.com/>short wedding dress</a> . The ball gown may also be back nevertheless with voluminous tulle skirts or skirts that seem float and ethereal <a href=http://www.wiredress.com/>Quinceanera Dresses</a> . . Corseted bodices will also be very well-liked this season <a href=http://www.wiredress.com/Wedding-Dresses-Wedding-Dresses-2012.html>yellow dress</a> . , for brides who would like a far much more figureembracing appear. Little dresses and tealength gowns are also observed this season. They re perfect for outside wedding ceremonies or if you d prefer to possess a second dress for hanging out in . <a href=http://www.wiredress.com/>ball gowns evening dress</a> . , in the reception! Wedding Dresses Trends For 2011 3 dimensional accents Bodices or sashes encrusted with pearls, <a href=http://www.wiredress.com/>column wedding dress</a> sequins and deposits that offer an very vintage or extravagant estate jeweler really feel, are extremely ?on trend correct now.Why Buy Google Plus One Votes Google is rather strong plus they have remained forward in the levels </p>