Too many foods to avoid now - HELP!

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percycat
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   Posted 11/30/2010 5:32 PM (GMT -7)   
All,
 
I saw my ENT yesterday, who treats my acid reflux.  In discussing my throat issues with certain foods, she was very adamant that anything I feel immediately after eating something must be due to the food, not to reflux.  She said I should avoid eating those foods.
 
The depressing part is that this now excludes EVERY FRUIT and many vegetables from my diet.  (Side question: could that be a fructose allergy, and not just the individual fruits?)  She wouldn't even look at how huge my list to avoid has gotten, nor consider a food challenge with the throat scope to see what's going on.  At this point, I've been SO FRIGHTENED by my doctors about avoidance, that I don't think I can trust an ordinary challenge where I just describe for them how I'm feeling.  My only symptom ever for the fruits is the throat closing, and whenever I mention that, I get the "you should avoid ___" advice.  But now my diet is so limited that I can't follow that advice and still stay healthy. sad
 
My allergist, who does know the seriousness of the problem, is supposed to be setting up food challenges for me, but he's having to negotiate with an outside clinic for that, and there's been no progress in nearly three weeks, except a call two weeks ago that they were "still trying."  Now I'm afraid those will be the "usual" kind of challenges where I would eat something and then they just "observe" symptoms.  If it's happening entirely in my throat which they can't see, how will I get an objective response about whether that food really is safe?  It might as well just be my med history in the office again at that rate.
 
I've lost over 20% of my weight in the past four months.  My GP shares my concern about the weight loss, and threatened to "do something" if it continued, but I don't think food challenges are the something he has in mind.  He believes all I have is anxiety.  I picture him sending me to the hospital and force-feeding me things that might kill me. cry
 
Please offer ideas, or at least let me know I'm not alone.  I don't know why my docs are all fighting me about this.  confused    They either toss out the "avoid it" advice but don't step up to the plate when the avoidance list gets too big, or it's the other extreme, where they tell me I can't really be having an allergic reaction yet won't help me to confirm that.  It's the allergists and ENTs who say "avoid," and the ER and regular docs who say "can't be."  I feel like I have to do what the experts say, but now what am I supposed to eat?!
 
Sad and discouraged, shakehead
 percycat

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 11/30/2010 6:16 PM (GMT -7)   
It sounds like OAS. (Oral Allergy Syndrome)
If you're allergic to birch pollen,you might be prone to an oral allergy to apples, pears, peaches, plums, apricots, cherries, hazelnuts, and kiwis.
Ragweed pollen has a high degree of cross-reactivity with the gourd family—watermelon, cantaloupe, zucchini, and cucumber.
An allergy to the weed mugwort can spell trouble with vegetables and spices of the parsley family, including carrots, celery, dill, and cumin.
Cruciferous vegetables like broccoli and cauliflower, lettuce, green onions, and cabbage as well as citrus, tropical, and berry fruits typically do not cause oral allergy reactions.

With mild allergies, sometimes just peeling the fruit is enough to solve the problem, as most of the allergy-inducing proteins are found in the peel or skin.
Some say placing the fruit or vegetable in the microwave for around 30 seconds—just enough time for heat to denature the proteins but not long enough to cook the fruit.
You can also try cutting the fruit and letting it sit, at which point oxidation will cause the fruits and vegetables to release digestive enzymes and break down the proteins.

I hope this helps.
Joy

percycat
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Date Joined Jul 2005
Total Posts : 1952
   Posted 11/30/2010 6:30 PM (GMT -7)   
Joy,

I think there may be some oral allergy going on with the ragweed cross-reactors (lips tingle with watermelon for instance), but lately, it's been all fruits, and only affects my throat. Supposedly, I'm not allergic to birch nor to mugwort; makes sense there, because even cooked apple is a problem. Since we're not in any pollen season right now, I don't know what to think, but it would be great if it were only OAS. I should definitely try to get clear confirmation about that.

percycat

Alcie
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Date Joined Oct 2009
Total Posts : 4931
   Posted 12/1/2010 8:15 AM (GMT -7)   
I hope you are keeping a food log/journal! That's how you identify the foods you are sensitive to. It takes a couple of months to really get an accurate list of the offending foods because you have to list everything you ate in a meal and then eliminate the non-offending foods.

Theoretically rice, lamb and pears should be hypoallergenic. Well, maybe not pears in your case, but they're worth trying.

You can do a food challenge on your own - AFTER you get a list of foods that you react to. It's not worth going to a clinic and paying a bunch of money unless you have such severe reactions that they are life-threatening.

All you do for a food challenge is eat a teaspoon of something like milk (or a tablespoon if you thing you are not highly reactive to the item). Then you wait 20 minutes, write down your reactions. If you have no reaction, then you eat 2 tsp, wait 20 minutes. If there is still no reaction you eat 4 tsp, wait, then 8, then 16 and stop. (You double the amount each time.)

My allergist said I could eat other things while I was doing my challenges, but I thought it might be best not to. You can only challenge about 2 things a day. So going to a clinic is not really feasable. You'd have to go for weeks!

I turned out not to be allergic to the hamburger as a whole, just the condiments. Not the waffle, just the maple syrup. I'm sensitive to gravy - the corn starch. I can't eat pork or grapes, except in very small quantities. See how this type of allergy/sensitivity/intolerance works? It's not like peanuts where just a teeny piece causes an IgE reaction; it's quantity that sets me off - acts as a trigger. I get reflux and tachycardia.

I googled my foods and the words food allergy and came up with my list - on the sulfite allergy pages. I tolerate maybe 2000 micrograms before it sets me off. That means no wine, beer, barbecued ribs, packaged foods.
Alcie
 
 

percycat
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Date Joined Jul 2005
Total Posts : 1952
   Posted 12/1/2010 8:46 AM (GMT -7)   
Thanks, Alcie. Yes, I've kept a thorough list. Right now, I eat things in as plain a form as possible - no mixing of ingredients, no spices, no prepared foods, no condiments, etc.

Since my main symptom with the fruits is always throat swelling, my docs don't want me to test at home, but they're also not helping much to set up a safe test in a clinic.

One thing my foods have in common is fructose, but it seems like fresh grapes have been okay, and they contain a LOT of it, so I just don't know. I suspected salicylates, but had to take an aspirin recently and did fine with it. Sulfites hadn't seemed to be a problem, but now even wine is becoming suspect. It's just so confusing and depressing.

percycat

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 12/1/2010 3:33 PM (GMT -7)   
The pollen is inside the part of the fruit skin. It's in there genetically.
I hope you have a epi-pen.
Joy

Alcie
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Date Joined Oct 2009
Total Posts : 4931
   Posted 12/1/2010 4:04 PM (GMT -7)   
Pcat
If you can drink a whole glass of wine you probably don't have a problem with either grapes or sulfites.

Not mixing ingredients may help eliminate foods from the suspect list. But if you are talking about things like store or even bakery-bought bread, there are additives you have to account for. Besides wheat and water there are all sorts of preservatives and other ingredients!

I would not try to home-test anything that gives you throat closing. I would try more innocuous foods, maybe individual vegetables with nothing added but a little salt to make them palatable. You can get calories from rice, which should not be a problem, unless you have an acquired allergy due to eating a lot of it - some Asians do seem to get this. I got allergic to sunflower seeds from feeding birds for 50 years.

Can you eat chicken? Other meats?
Alcie
 
 

percycat
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Date Joined Jul 2005
Total Posts : 1952
   Posted 12/1/2010 5:19 PM (GMT -7)   
Thanks everyone.

I do have an Epi-Pen.

Fortunately, starches and grains don't seem to be a problem, except for corn. And meats are all fine as well. So is milk and raw cheese. I'm hoping to get connected with a nutritionist who also understands food allergies, but won't see the doc who might be able to refer me for another two weeks.

For now, cabbage and other greens are fine, as are broccoli and items in that food family. Sweet potatos also seem okay, although I've only tried a few bites. And today I managed to have some pomegranate juice without trouble, so I think that means fructose is not the problem. That's a relief.

Thanks again for the voices of sanity. It really helps to know that I'm not alone.
percycat

PS - Alcie, I've read other cases where folks with a lot of bird contact also developed allergy to sunflower seeds.

SnowyLynne
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Date Joined Apr 2004
Total Posts : 1539
   Posted 12/1/2010 7:07 PM (GMT -7)   
Has the Allergist NOT tested you for food allergies???
SnowyLynne

percycat
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Date Joined Jul 2005
Total Posts : 1952
   Posted 12/2/2010 8:58 AM (GMT -7)   
SnowyLynne,

Amazingly, no, I haven't been skin tested for food allergies. Boggles the mind, doesn't it? My allergist did not want to, given my history of scary breathing reactions, and neither ENT deals with food allergies, only environmentals.

I have had RAST testing done for many foods (all negative), including several fruits, but I feel there's a difference between what's really in the fruit and what's in the commercially prepared test extract. Because of these negative results, none of the "regular" docs I've seen believe I'm allergic, but I also get the "reaction trumps test" advice from the allergist/ENTs and also support groups, like HW. And it's clear that my body IS doing something in response to some of these "negative" foods.

My allergist has mentioned possible prick-to-prick testing, but again, I'm still waiting for them to get their ducks in a row. His office is not near a hospital, and so a bad reaction during testing is something we both have concerns about.

percycat

Alcie
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Date Joined Oct 2009
Total Posts : 4931
   Posted 12/2/2010 10:12 AM (GMT -7)   
A lot of food allergies do not show up on skin tests. These are the ones that are not IgE mediated - like mine. Som docs call these intolerances or sensitivities. My allergist is a lumpre, calls them all allergies.

I have no problem with corn, but when corn is processed it is soaked in hot sulfited water to soften it. Then it is processed by spray-drying, which often means it gets another dose of sulfite to keep the spray nozzels from clogging up. It then becomes corn starch, corn syrup, dextrose and other products. These are the problem, amny having 15ppm or more of sulfite. I can get away with a can of soda, but not more, before I get reflux and tachycardia. A more common reaction is migraine headaches. Check the ingredients in the pomegranite juice. It's never all juice, unless most of that juice is apple or grape.

The average allergist, not to mention other docs, has no clue about the intolerance/sensitivity types of allergies. After skin testing I was told by my first allergist that I have no food allergies and sent on my way. It was the second one who had had 40 years of experience who said, "I see this all the time. Of course you have food allergies." My GI doc still doesn't believe I get stomach issues and tach from foods. My cardiologist doesn't say anything, but I'm pretty sure he doesn't believe in it either. My PCP has seen me in reaction, so he now does believe me.

I have no allergic reaction to vegetables or fruits, except garlic and onions, which contain a lot of sulfite. It's the spices, actually only pepper, garlic, onion and mixed spices - all of which are sulfited - which cause reactions for me. Salt and most individual spices are fine. I do get gas from lots of veggies, but that's a different story.

Corn-based sugars are a problem in large quantities. Dextrose (which is right-handed glucose) is in lots of things: artificial sweeteners as a filler, all kinds of foods that are processed, IV fluid (A liter has about 600 micrograms.)

I get pretty sick from eating gelatin, sugar-free or not. Gelatin is made from sulfite-bath soaked pork skin, again for softening. Pork contains sulfite naturally. A delicious bowl will give me tachycardia within a few minutes.

So Percy cat - you are on track with getting your food allergies figured out. I wouldn't be afraid of challenge testing the foods you are pretty sure you CAN eat. That would save you a ot of time in a clinic, money too. I'd be surprised if your insurance would cover it.

Keep on keeping your food log and lists of foods tolerated and not. Once you get a list of intolerances you can probably make a connection.
Alcie
 
 

SnowyLynne
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Date Joined Apr 2004
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   Posted 12/2/2010 4:03 PM (GMT -7)   
Get an epipen then if you have a reaction you can us it to stop the problem........
SnowyLynne

Alcie
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Date Joined Oct 2009
Total Posts : 4931
   Posted 12/3/2010 12:56 PM (GMT -7)   
The only thing about an epi-pen is that some people are allergic to the preservative (sulfite) in it. It sure would be handy to have 2, yes 2 are needed if it takes even a moderate time to get to a hospital. You'd use it for the throat closing reactions.

Meantime, keep on with the food log. Read ingredients in everything. If you think you may be intolerant to fructose see http://en.wikipedia.org/wiki/Fructose_malabsorption. There are symptoms, explanation and a list of foods and ingredients that are similar to avoid.

Fructose intolerance is one of those things you won't hear about often, like my sulfite sensitivity. We have to do lots of research on our own.
Alcie
 
 

Xen
New Member


Date Joined May 2010
Total Posts : 8
   Posted 12/3/2010 8:04 PM (GMT -7)   
percycat, something comes to mind in reading your description. There are some common fungicides, pesticides, insecticides and washes used on fruits and vegetables that can cause this. If you live in an agricultural area, you're likely also getting them in air and water. Some accumulate in your body. If you're having this trouble with organic produce, then you might look at mold as a culprit. When your throat closes, does liquid diphenhydramine or other antihistamine help? This is what I use.

percycat
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Date Joined Jul 2005
Total Posts : 1952
   Posted 12/3/2010 8:25 PM (GMT -7)   
Xen,

Does the liquid work more quickly? My allergist told me to get some fast-dissolve strips, but they're not available right now (I think tangled up with the Tylenol recall, according to one web site). I have tried some Alavert, but it has flavors that I usually have problems with, and so I don't want to use it unless I have to.

Last time, I chewed up a Benadryl, but it stung and burned so much for so long that it irritated my throat also.

percycat

Xen
New Member


Date Joined May 2010
Total Posts : 8
   Posted 12/4/2010 4:29 AM (GMT -7)   
Liquid is fast, yes. I use two benadryl dye-free liqui-gels, or there's generic diphenhydramine equivalents available at some drug store chains. Chomping down on them burns, but it gets the liquid directly to throat and mouth where you need it. it's far better than suffocating from an allergic reaction and the burning goes away quickly. If antihistamine doesn't work, you're dealing with something that is not an allergy.
If this works for you, try eating a very small meat-based breakfast and lunch, and take antihistamine an hour before a late large dinner, so the drowsiness caused by the antihistamine doesn't interfere with your daily activities. This works very well for me.
And remember that most of the world's population does not eat a western "balanced diet". If you can eat meat and starches, eat more of them.

Alcie
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Date Joined Oct 2009
Total Posts : 4931
   Posted 12/4/2010 11:47 PM (GMT 0)   
Beware of liquid benadryl and diphenhydramine! They are sulfited - this preservative is often in liquid meds. The pills are clean. Chew them up if you must, although they taste awful. They will work faster that way. I don't get a burn, just a little numbness. I won't try the liqui-gels because I've had bad reactions to Tylenol liqui-gels. Probably colors and preservatives.

I don't tolerate flavors and sweeteners either. It's usually the sulfite in them.

There used to be plain Alavert pills. Maybe you can find them still on the market. They're not the instant dissolve on tongue, so you'd have to chew them too. I don't think they work as well as Benadryl in emergencies either, at least not for me. I do get away with the small amount of flavoring in the instant Alavert - better than the liquid Benadryl!
Alcie
 
 

percycat
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Date Joined Jul 2005
Total Posts : 1952
   Posted 12/4/2010 7:43 PM (GMT -7)   
Thanks for the advice about fast Benadryl, everyone. I'll be on the lookout for it either in liquid or gelcaps. It seems like I can tolerate sulfites, at least for now, so it's really only the flavorings I have to be careful of.

In a pinch, I do always carry regular Benadryl and can stand to chew it up and deal with the stinging and numbness if I know it will help. And of course I have my Epi-pen.

percycat

Alcie
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Date Joined Oct 2009
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   Posted 12/5/2010 2:52 PM (GMT -7)   
Liquid Benadryl does have flavoring and sweeteners. They don't publish their excipients, but some generics have Propylene glycol, Sorbitol, and Maltitol. Benadryl liquid also has coloring, except for the "dye free" formula. I think the gelcaps do have dye.

I can't take the liquids, but chewing up the tablets, while not tasty, makes them work fast enough.
Alcie
 
 
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