Too many foods to avoid now - HELP!

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.

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.

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.     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,

 percycat

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

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

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?

Has the Allergist NOT tested you for food allergies???

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.

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.

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

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!

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.