Reactions to ??????? Anyone else ?: More and more I... - LUPUS UK

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Reactions to ??????? Anyone else ?

johare profile image
16 Replies

More and more I am having reactions to various things from metals to food, perfumes etc. I understand why, but Monday I had eaten things all dayI had eaten before and can not think of anything I had come into contact with to cause a reaction as severe as I had.

About an hour after dinner (home made chicken and mushroom stroganoff). I got a headache, my face flushed red and then was burning hot. It then travelled to my chest. I became nauseous and had diarrhoea for about an hour. During that time my temperature shot up, my head felt like it was going to explode and then I fainted. Luckily no swelling. My husband had the sense to rub liquid piriton around my gums and get my temperature down.

Although I have been feeling exhausted since all the symptoms have gone.

As soon as what ever it was was out of my system I felt better.

Anyone else find they are fighting the unknown ?

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johare
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16 Replies

Oh dear J - poor you it's scary. To answer you - yes I had very similar allergic episodes when I was younger. The few times I wound up at the doctors were when it had turned anaphylactic. So adrenaline shots or cortosteroid shots were immediate and then I'd have months, even years of juggling or trying food eliminations or on Prednisolone for extended periods. The things that showed up in basic allergy testing were animal fur and house dust mite - the latter very positively.

Now the only allergies I have had have been due to medications such as Sulfasalazine and Hydroxy. Otherwise it's all under the skin. But I take antihistamine at night regardless. Sorry that's all I can say as bot feeling right myself but in my case I think it's Sjögren's related fatigue adtse a few days spent in mental overdrive, worrying about lack of funds and very sick mother in law at other end of the country.

Thankfully my allergy days are over. Hoping just a stage for you too🤞🏽

I always feel I'm fighting the unknown though. X

johare profile image
johare in reply to

Thanks for replying. You would think I would be used to it by now as my daughter has anaphylaxis, but this was so sudden and not following my usual itching swelling pattern. I think you are right maybe anti histamine for a while incase the season has also irritated things.

soootired profile image
soootired

I don't have as violent a reaction as you describe but this evening I ate something and had a milder version of what you describe. Came over feeling hot, then felt very sick with a headache. Then on the loo.

No rhyme or reason to it , this happens a lot at the moment with me too.

I'd be interested in reading people's thoughts - I'd not thought of allergies, I Was wondering about gastric stuff that seems to be going on a lot with me generally at the moment....

Im going to follow this post. 😊

Minnskimoo profile image
Minnskimoo in reply to soootired

Me too!

I have had this type of reaction so many times recently. Foods I have eaten before that have never bothered me can, without warning, send me heading to the bathroom with the most awful, excruciating cramps and, well, you can obviously guess the rest! 😬The next day, I feel wiped out and like I have a hangover. Oh, if only it was that simple!

Barnclown profile image
Barnclown

This sort of reactivity is v familiar to me....am being investigated for Mast Cell Disorder by immunology. I forget johare: are you hypermobile? I'm hEDS (hypermobile Ehlers-Danlos Syndrome) and researchers are finding that a high proportion of hEDS cases develop a Mast Cell Disorder so my hyperreactivity may be due mostly to this. Here is a link:

ncbi.nlm.nih.gov/pmc/articl...

🍀😘🍀😘 coco

johare profile image
johare in reply to Barnclown

Was hyper mobile ha ha. Yes I was as a child, I had lots of problems ballet etc Interestingly my daughter the one with anaphylaxis also is. So there you go. When she was at Great Ormond street as a child we did a lot of research then ( in the 80s) into what was new with mast cells. But this is an interesting link.

Barnclown profile image
Barnclown in reply to johare

Ah Ha! This link may also be intetesting (histamine intolerance & mast cell disorder nutrition sheets etc):

histaminintoleranz.ch/en/do...

Treetop33 profile image
Treetop33

I'd love to know what this was about. I went from being someone who wasn't allergic to anything to acquiring sensitivities to foods, perfume, chemicals, pollen etc etc. I ate organic beef the other day and spent the night trying not to be sick. Awful reflux and haven't recovered since.

johare profile image
johare in reply to Treetop33

My sister who has been diagnosed with chronic fatigue spent two years unable to digest any red meat at all. She vomited and if she kept it down had the runs. Now not so bad but keeps away from beef. My daughter has to stay away from all beef products!

Actually - thinking on it more - this has been huge issue for me lately too only I was just thinking of skin and swelling not my GI problems. Food and me not getting along well these days but hadn't thought of this as allergy related. I used to throw up out of the blue after some meals for no rhyme or reason, especially when on Methotrexate - now it's just abdo pain and dystension - possible gastroparesis?

My brother in law started to have reactions to all sorts of things - foods, perfume - to be honest it was a bit hard to tell as so much seemed to set him off. They became more serious and my sister (who is a GP) started to carry an epi pen and had to use it many times. He was often admitted to hospital with anaphylaxis, was under a consultant - they had no idea what was going on. My sister became exasperated after the consultant said he just had to live with it as it wasn't life threatening - they had just returned from a holiday when my sister had to administer the epi pen 3 times during the flight. From this point on she gave up with the consultant and started her own research. The answer she came up with was wheat. She put him on a wheat free diet and no more reactions. Many non-food items contain wheat, including cosmetics and bath products and this is why he was being set off - seems him immune system was already in overdrive as he was eating wheat and then being exposed to other products containing wheat pushed him over into anaphylaxis.

johare profile image
johare in reply to

Yep most of the time it is pin pointing what the trigger is particularly in hidden foods. My daughter finds she can tolerate one thing by using piriton but add another and then she is in anaphylaxis.

webar4780 profile image
webar4780

Hi johare,

Yes, I can add my name to the list of suffering allergies and food intolerance!

Currently, I am diagnosed hypothyroidism, connective tissue disease, sjogrens ?lupus.

When I suddenly became very unwell 2.5 years ago, amongst my very alarming symptoms, I became allergic and intolerant to numerous food, cosmetics, toiletries, metals, cobalt, nickel, alcohol.....

Thank the Lord, for a wonderful dermatologist. I was referred as an emergency patient because my body became covered with a vicious itchy rash and I was very unwell.

Long story short, after referrals to various consultants, I was chemically tested, have 2 page instructions not to eat many foods or drinks, that contain metal. (You may be surprised how many!), because I had become very allergic to metals, cobalt, nickel. I was also advised about products containing metals (another surprise!), and tolled to avoid them.

It was through further investigations, I was diagnosed with connective tissue disease, sjogrens ?lupus (already hypothyroid diagnosed 25 yrs).

My fantastic dermatologist, prescribed products for my skin and taught me how to manage with them, whilst discarding over the counter toiletries. My skin is almost 99 percent managed. Flare up different story.

I was not so fortunate getting help with food allergies and intolerance. My GP referred me to an allergist. The hand gel in his room caused me a terrible reaction (face flushing, sudden extreme nausea, abdominal discomfort, griping abdomen pains, skin burning, fatigue...). Hand gel is alcohol based. The smell in the room and the handshake he gave me was enough to cause a reaction. I know I have to avoid it.

Unfortunately, the consultant could not accept the hand gel would cause such a reaction. I was only tested for animal fur, dust mites, which came back clear. We never got round to my food allergies and intolerance because the consultant was so dismissive.

Follow up letter from the consultant diagnosed psychological response. I was not at all impressed! I vented my point of view here, on HU. I got lovely support, as always.

However, it was the one, and only time, I put in a complaint regarding a consultant. I researched beforehand and found I was not alone, having such symptoms, because of autoimmune disease. And, yes, as coco says, MCD is getting more attention through researching patients symptoms. Environmental toxins are now getting the research they deserve. Pollution are making people sick!

I am happy to say, the hospital were very professional and they spoke to both consultant, and myself. I received a letter with an apology from the consultant and the hospital. And verification, that the allergist has very limited knowledge of rare autoimmune disease, and was therefore, not authorized to make his diagnosis, that my symptoms were psychological.

What I have done for myself, is keep a food diary. I found that wheat was my biggest trigger. (Another member here, HU, has also found wheat problem). Again, I am amazed at how much wheat is in food! Just as I was to find metal in many foods and alcohol!

Reading labels, and buying mostly organic food helps me a lot! Though, occasionally, I get caught out, so take antihistamine.

I think we have to keep educating ourselves, as ever, I am learning so much, how modern society is making people sicker and sicker. Together we can change this.

I wish you luck as you try to sort out your unique triggers. Wouldn't it be lovely if we could enjoy a picnic in the park, with no concerns, as the average person does! Take care.

Ps, that really was, the long story short!! Lol.

johare profile image
johare in reply to webar4780

I'm sorry to hear you had such a battle. Interesting what you say about metals in alcohol. As many of us have moaned about not being able to tolerate even a small amount of alcohol now, both myself and my daughter find that the alcohol enhancers the reaction. Whether this is the pure alcohol, the sugar or , as you say the metal in it , it would good to know. I reacted to iodine had scrub whilst nursing and now cant have contrast dyes at all. It is hard to get professionals to listen, they always smiled until my BP dropped and heart raced and then I fainted and the reset button starts.

bones-bones profile image
bones-bones

I have had to cut gluten out of my diet . I used to have to rush to the loo wherever I was to prevent accidents. Sometimes I had to turn round and go home at top speed praying I would make it ....I once didn't. Cutting out gluten stopped all that. You have to be very careful as there is gluten hidden in the most peculiar places ! Read the labels carefully. I made mistakes a couple of times......Worcester sauce and chocolate (some chocolate is fine but read the label) I really suffered afterwards so am super careful now.

johare profile image
johare in reply to bones-bones

Ive taken this on board and my consultant is now coeliac testing me. Luckily I found a place today that does a gluten free chocolate cake! what heaven.

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