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Critical - multiple food allergies

Messages
90
Allegic for a few years to most foods. Following
a reaction to a product, a few days ago,
I can now only
tolerate two foods.

I tried a tiny bit of Vit C, which was
not tolerated either.

Input and info much appreciated.
 
Messages
90
What are the two foods you are able to tolerate?

Exactly, when do you get the allergic reaction? Immediately after food touches your tongue, throat or stomach?


The only food I was able to eat today were brown rice and beef. This morning I could not eat it,
tried again, early afternoon, and was able to eat.

Symptoms: tingling lips and face (warning, I will not continue eating when this happens).
Welt on the right cheek, left cheek swollen, or swelling under the chin, sometimes throat
symptoms,upon immediate contact. I tried a little yogurt on the lip and had to wipe it
off immediately.
 
Messages
90
London UK, and no, I would not do the dessensitisation prog,
its not always successful and is risky, as well as being lengthy.
I have other health concerns such as heart failure etc..
to consider. I am also very weak. Dissenss is not offered
on the NHS (socialized medicine in the UK).

Dissens may be appropriate if fairly strong with non multi systemic
disease involvement, and not for so many allergic responses. There is
also a history of MCS.

Thanks for the suggestion.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Sorry to hear that Quirky.


After developing ME (sudden viral onset) I started getting anaphylaxis to some foods (which I had never had before). Before ME I had slight MCS but this got a lot worse.

I was lucky and EPD at the Homeopathic Hospital in London helped with my food allergies. Before then I had provocative desensitisation from a private doctor (retired) which also helped.

The EPD did take a long time but helped me with the range of foods I could eat and was long lasting.

Really sorry to hear how weak you are and how few foods you can eat. That's really hard.
 
Messages
90
I have been looking for a homeopath to help, but to no avail. One recommended
an experiment product which alters DNA (homepathic).

Could you email me the name of the homeo who helped you? He may recommend
someone.

I think the London Homeo Hospital has been shut down, or operate privately.
My local PCT will not support alternative medicine.

Many thanks
 

ukxmrv

Senior Member
Messages
4,413
Location
London
The Homeopathic hospital (I think) has changed it name to something like "the hospital for integrated medicine".

My PCT was trying to limit access there but I put in a request direct to them to have my treatment continued and they finally approved it. You could consider doing this as other patients with PCT's denying access have caved and let patients go there after direct challenges. It been like this for the 20 years or so I've been treated there with access to the hospital being denied off and on for years at a time.

Sorry I don't have any names of useful homeopaths there as I think that they may just be carrying on the work of Dr Jenkins (now retired from there as well). I'll take a look at the link you posted (thank you). Have had little sucess with homeopathic treatments in general and only went to the hospital in London as they had a doctor who did EPD and in the early 90's offered other experimental ME tx.
 
Messages
90
The Homeopathic hospital (I think) has changed it name to something like "the hospital for integrated medicine".

My PCT was trying to limit access there but I put in a request direct to them to have my treatment continued and they finally approved it. You could consider doing this as other patients with PCT's denying access have caved and let patients go there after direct challenges. It been like this for the 20 years or so I've been treated there with access to the hospital being denied off and on for years at a time.

Sorry I don't have any names of useful homeopaths there as I think that they may just be carrying on the work of Dr Jenkins (now retired from there as well). I'll take a look at the link you posted (thank you). Have had little sucess with homeopathic treatments in general and only went to the hospital in London as they had a doctor who did EPD and in the early 90's offered other experimental ME tx.

Many thanks for your input. I will contact my local PCT, not hopeful though. The local borough is notoriously uber stingy.
My GP is on the board of the PCT, he refused the referral. He is not not helpful other than routine tests..
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Symptoms: tingling lips and face (warning, I will not continue eating when this happens).
Welt on the right cheek, left cheek swollen, or swelling under the chin, sometimes throat symptoms,upon immediate contact. I tried a little yogurt on the lip and had to wipe it off immediately.

Wow, that is quite something! I am sorry you have to go through this, must be terrible.

I am afraid I don't have a theory to explain what the heck is going on. However, doing some kind of inflammatory panel would probably be warranted. It seems your immune system is in overdrive mode for some reason. The only other thing that comes to mind is to try to raise glutathione levels, maybe with N-acetylcysteine, to maybe modulate the inflammatory response.
 

xrunner

Senior Member
Messages
843
Location
Surrey
A few years ago I went through an acute phase of MCS. As a result, I was unable to eat most foods for several weeks and spent almost two weeks unable to eat anything and sleeping one or two hours per night if at all. Ordinary smells were like torture.
I discovered that it only takes exposure to one thing to upset the immune system for it to react to almost everything else unrelated.
What helped me survive was the Qlink pendant, it reduced the intensity of my reactions so that I could endure nibbling at a few foods here and there and avoidance of the original triggers. However it took several months for reactions to abate a bit. I then tried NAET which helped eliminate all reactions completely.
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
Quirky,

So glad you posted here. I've been where you are. There were weeks when the only thing I could eat was white rice, and even that had to be blended down into a smoothie and watered down so that I could drink it because my throat was so tight that solid food wouldn't go down. And then I lost even that. Several times I as all the way down to no foods at all, though thankfully that generally only lasted a few days to a week before I was able to find a tiny bit of something that I could get down. I don't have any surefire advice for you, but I can offer a lot of ideas ased both on my experience and on what I've learned since then. (I'm down to about 5 or less foods right now but my diet has now been stable for years.)

If I were in your shoes right now, the first thing I would try is called a nutrient enema, or rectal feeding. it sounds like the reactions are triggering upon contact with your lips, mouth, or esophegus, and my suspicion would be that bypassing that system entirely could get you a wider range of nutrients. I have never done this myself as I only found out about it a few months ago. But from what I've learned from talking to people who have done it, you can use basically any tube, and any liquid food, though you generally want to avoid really fatty stuff because the fat can't be absorbed that way.

I'd probably start with something like beef broth and/or rice water since you know you can tolerate those, and if that goes okay then I'd slowly add in other things to that mixture so that instead of getting a totally new food your body is receiving what it's accustomed to plus a bit of something else. Ideally, I'd try to switch entirely over to nutrient enemas for a week or longer to try to give that whole mouth and throat area a chance to really calm down.

There's a lot more that I want to write, so many different directions you could go in with this, but first I have a few questions:

How many foods were you tolerating prior to the recent exposure that knocked you to this state?

Has the amount of foods you can eat gone up and down multiple times over the years or has it been a steady decline?

Was there any time in the past when you did react either to beef or brown rice?

Do you feel like you're getting enough to eat despite the severely limited diet?

What is your weight like? Over? Under?

A quick note about NAET: while many have experience remarkable success with it to reduce widespread food sensitivities including more than one friend of mine, my experience with NAET actually worsened my food allergies/sensitivities. The doctor administering it acknowledged that we had to stop because it was clearly making things worse rather than improving it. That was the time I had multiple instances of temporarily not being able to eat anything. So while it can help a lot, there are also risks to be weighed when considering it. There are several other ideas of treatment that I could toss out but I'll wait until I hear back from you.

Hang in there. *hugs*
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
I think this maybe the time where you need to be under the care of your GP. its really horrible, putting things on your lips or tongue and having to spit it out immediately, in a permanent state of fear about food.

Unless you can manage on brown rice, perhaps rice milk with a few minerals/vitamins added for a couple of weeks. This is not a diet to be advised but I've been in your shoes and done it - until I felt everything had calmed down, adding in every week one at a time, gluten free bread, broccoli, carrots, lamb then beef.
The problem is you have to be very very patient and strict.

Antihistamines may help but in your situation I wouldn't try them unless on a doctors prescription, and I would sit outside the surgery when taking the first one, sounds dramatic I know but I also know how quickly adverse reactions can be.

I've had bad experiences too with de-sensitization programmes, worse thing I ever did, but they do work for many I know.

Hope it settles down soon, and you'll get back to where you were.
BtW What was the prduct that caused this latest reaction?
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
Qiurky, your situation has deteriorated much more than mine. The rest of my post may not be applicable for your extreme condition, but could be helpful to those with many seemingly perplexing food intolerances.

I am down to a handful of foods. By the way, have you tried pears and fresh green beans (steamed)? Pears are the fruit of last resort for those with MCS (but only some varieties, see link to Failsafe Diet below).

For other who are facing the puzzle of why some foods are tolerated, others not:

I am now on an anti gluten, salicylate, amine, sulphate (and any other additives and in addition to rice and beef, I can tolerate pears and fresh green beans and only the big unbrushed potatoes - simply because many vegies are high in the offending chemicals, or have been treated. I even have to peel my pears (they must also be soft). I am not supposed to eat cooked beef which has been kept overnight etc, because of the buildup in amines. The recommended extreme course for this diet is to not fry or bake food. Most cooking oils will have additives which will exacerbate a chemical buildup. For a safety first diet, only steam your meat and the vegies I mentioned and eat fresh. Do not even keep fresh meat in fridge for more than a day.

Part of the problem may be due to a build up of above chemicals and the only way to reduce this is to cut it out of diet. Note the above additives may be the real reason many other diets (such as carb or even protein diets) seem to work for me/cfs, because many of the chemicals are cut out.

I still take a H2 antagonist (for stomach produced histamine) - ranitidine, rather than a proton pump inhibitor. Many of my issues seem to be histamine-induced, whether or not there is an underlying cause I don't know.

For more info on amines - it'll blow your mind at how far you have to go. But once you get things planned it gets easier: http://members.ozemail.com.au/~btrudget/Karls Pages/Managing Amines and MSG/Managing Amines.htm

The rest of my diet is structured around the Failsafe Diet recommended for autistic children and those with MCS. This is not a fad diet, but relies on reporting of reactions to supermarket products by the community, those that have MCS. It is become a sort of way of life for families with kids who have intolerances and behavioral difficulties: http://fedup.com.au/

Although the above diet is about Australian based products, there are links to US equivalent.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
xrunner: I am amazed at your having improved from such a level of food sensitivity. I think I might investigate these QLink pendants! There seems to be different products. Are they all pretty much the same? Would a bracelet serve the same function as a pendant? If only I could have NAET at home I would give that a try too.

Dainty: I too am interested in what you have to say. I have been reacting to ALL foods for close to a year now. I simply eat and suffer because I have to, but the reactions are gradually getting worse.

My decline to this level of sensitivity for foods was gradual with a few sudden major worsenings.
 
Messages
90
A few years ago I went through an acute phase of MCS. As a result, I was unable to eat most foods for several weeks and spent almost two weeks unable to eat anything and sleeping one or two hours per night if at all. Ordinary smells were like torture.
I discovered that it only takes exposure to one thing to upset the immune system for it to react to almost everything else unrelated.
What helped me survive was the Qlink pendant, it reduced the intensity of my reactions so that I could endure nibbling at a few foods here and there and avoidance of the original triggers. However it took several months for reactions to abate a bit. I then tried NAET which helped eliminate all reactions completely.

xrunner: thanks for your input. The MCS also worsened since the severe reactions to foods. I will look at QLink, but can't afford the NAET, both
financially and healthwise.

Concur about the one exposure!

It has to be a no risk or minimal risk to approaches. If I was healthier, I would try NAET, or desssens through homeo. The importance of remaining strong, not on constant alert, fight/flight mode, and avoidance to trying minute amount of foods, as for MCS, avoidance is crucial to avoid worsening of symptoms.:thumbsup:
 
Messages
90
xrunner: I am amazed at your having improved from such a level of food sensitivity. I think I might investigate these QLink pendants! There seems to be different products. Are they all pretty much the same? Would a bracelet serve the same function as a pendant? If only I could have NAET at home I would give that a try too.

Dainty: I too am interested in what you have to say. I have been reacting to ALL foods for close to a year now. I simply eat and suffer because I have to, but the reactions are gradually getting worse.

My decline to this level of sensitivity for foods was gradual with a few sudden major worsenings.

It was the same, gradual worsening. No matter about rotations, or trying new foods, or same family of tolerated foods, nothing worked.
The reaction changes hour to hour, day to day.

What type of reactions do you suffer from?
 
Messages
90
xrunner: I am amazed at your having improved from such a level of food sensitivity. I think I might investigate these QLink pendants! There seems to be different products. Are they all pretty much the same? Would a bracelet serve the same function as a pendant? If only I could have NAET at home I would give that a try too.

Dainty: I too am interested in what you have to say. I have been reacting to ALL foods for close to a year now. I simply eat and suffer because I have to, but the reactions are gradually getting worse.

My decline to this level of sensitivity for foods was gradual with a few sudden major worsenings.

What type of reactions do you suffer from? Does it change hour to hour, day to day?
Are you taking antihistamines? (I am not taking any).
 
Messages
90
Qiurky, your situation has deteriorated much more than mine. The rest of my post may not be applicable for your extreme condition, but could be helpful to those with many seemingly perplexing food intolerances.

I am down to a handful of foods. By the way, have you tried pears and fresh green beans (steamed)? Pears are the fruit of last resort for those with MCS (but only some varieties, see link to Failsafe Diet below).

Thanks for your comments. Tried peeled pears yesterday and reacted, same with green beans. Will look at Failsafe Diet.
I can only two foods at the mo, and hope it will increase in time.


For other who are facing the puzzle of why some foods are tolerated, others not:

I am now on an anti gluten, salicylate, amine, sulphate (and any other additives and in addition to rice and beef, I can tolerate pears and fresh green beans and only the big unbrushed potatoes - simply because many vegies are high in the offending chemicals, or have been treated. I even have to peel my pears (they must also be soft). I am not supposed to eat cooked beef which has been kept overnight etc, because of the buildup in amines. The recommended extreme course for this diet is to not fry or bake food. Most cooking oils will have additives which will exacerbate a chemical buildup. For a safety first diet, only steam your meat and the vegies I mentioned and eat fresh. Do not even keep fresh meat in fridge for more than a day.

How many foods can you eat at the mo?
Can you feel sensation either in the skin, cheeks, lips, throat
as a red flat to stop eating a specific food?

Part of the problem may be due to a build up of above chemicals and the only way to reduce this is to cut it out of diet. Note the above additives may be the real reason many other diets (such as carb or even protein diets) seem to work for me/cfs, because many of the chemicals are cut out.

I came across an interesting article about the toxic chemicals we may be manufacturing resulting
from dysfunctional detoxification pathways. I will post it on another thread. I can't remember who wrote
it and can't reference. Some of it makes sense, but the foods that are supposed to help with this,
are not tolerated. SIGH.


I still take a H2 antagonist (for stomach produced histamine) - ranitidine, rather than a proton pump inhibitor. Many of my issues seem to be histamine-induced, whether or not there is an underlying cause I don't know.

How do you know its histamine induced? My tests show they are not, but, yet, I can't tolerate any foods high in histamine,
or could raise histamine. I am not convinced of the IgE IgG mediated reactions. If I put a tiny pin prick piece of cheese on
my tonge, and I get an immediate flare up of angio-oedema, it would be histamine, or????


For more info on amines - it'll blow your mind at how far you have to go. But once you get things planned it gets easier: http://members.ozemail.com.au/~btrudget/Karls Pages/Managing Amines and MSG/Managing Amines.htm

Will look at the link.
The rest of my diet is structured around the Failsafe Diet recommended for autistic children and those with MCS. This is not a fad diet, but relies on reporting of reactions to supermarket products by the community, those that have MCS. It is become a sort of way of life for families with kids who have intolerances and behavioral difficulties: http://fedup.com.au/

Although the above diet is about Australian based products, there are links to US equivalent.

An allergist years ago pointed to the fact that those severe allergies could be caused by
fungal infections or any chronic infections, bad teeth (yep, have this too), and so on.. Difficult to
causality with so many variables.


:thumbsup: