New/Lost

[badjer]

I apologize that this is going to be long, but I am just looking to talk to someone who might understand.

I was tested for food allergy as a teen and tested positive for allergy to soy and corn. I tried excluding them but didn't notice a difference when I ate them again, so I went on eating them. I am now 28.

As the years passed, I've been diagnosed with anxiety & OCD (both of which are now under control), interstitial cystitis (moderate), raynaud's disease (moderate), TMJ, seasonal allergies (primarily ragweed and timothy grass) and unexplained chronic inflammation of my knees. Now, suddenly, I've got red blotches all over my body. Doctors have no idea what they are.. said they look deeper than a contact rash. They look like broken blood vessels...

So they sent me in for allergy testing. The clinic I went to rushed me through, gave me no info, and only tested for 30-some foods, leaving out many I would have liked to know about. But I tested allergic to MANY of those (skin prick test).

On a scale of 0 to 4+, 4+ being really allergic and 0 being not allergic, I am allergic to:

Category 1+: pecan, crab, carrot, tomato

Category 2+: peanut, soy, barley, almonds, pistachio

Category 3+: celery!?, corn, green peas.

Now, I've been vegan since 2008. I just recently gave in and started getting bread with eggs in it because I've been gluten-free for two years now since doing that made me feel better (I'd been experiencing gastro problems, bad fatigue, brain fog, etc). Now I'm wondering if it's just the barley allergy and that wheat is ok? Argh. Anyway, now veganism is looking completely improbable but I still refuse to touch milk or most farmed meat... but I have been eating locally caught fish now, too. But without soy, corn, or wheat, and now many nuts.. I have no idea what to do! Should I see a nutritionist?

At any rate, I don't know where to go from here. I feel like with this spread, there's little I can eat. Because I have interstitial cystitis, I have to avoid a lot of fruit as it is (all citrus, strawberries, melon, etc.. really only pears and blueberries seem to be totally safe). I may request to go back to the clinic to be tested for more foods just to be certain. But I am also wondering how much the food allergies have contributed to my other health problems, and if anyone else has found a connection. The very rushed allergist I saw abruptly answered that question with "no, maybe the rash, but that's it" and walked out of the room... 

I also just found out that the only medication that's ever given me any relief, and provides me the ability to function at ALL on a daily basis with my interstitial cystitis has corn in it. Oh, goodness....

[Macabre]

First of all, welcome!  I hope you find this a warm and helpful community.

Second of all, were you suspecting any problems with those foods before you tested?  Skin prick gets have a high rate of false positives, and they are only really effective to help confirm a suspected allergy to a particular food, not when casting a wide net. And also used in conjunction with an ImmunoCap or Rast test (blood). The gold standard for diagnosis is reaction history.

I worry that you may be avoiding foods you don't need to.

Also, don't give up your veganism yet. My peanut allergic son has been a vegatarian (but not a vegan--but has avoided gelatin and does not eat fish) since he was 7.  He is 14 now. DH and I are not vegetarian, though we eat that way at home, and you can see our allergens below.

I would consider going to the trouble and expense of getting a blood test. Likely from a different allergist. One whom you've researched and that specializes as much as possible in food allergy. You could take your SPT results with you for reference. You don't have to avoid antihistamines for blood tests.

I would also start a food journal until you get to that appointment.

I'm sorry you're dealing with all this!

[Mookie86]

I second making sure you're truly allergic to these foods and haven't seen false positives.  It'd be a shame to eliminate so many foods unnecessarily from your diet.

It looks like it's ok for you to eat legumes, yes?  If so, there are plenty of vegan protein sources available to you through chick peas, kidney beans, black beans, pinto beans, and other legumes.  Perhaps you can eat quinoa and/or couscous?

[badjer]

Thanks for your responses!

I am definitely going to look into going to another allergist and getting a blood test.

As far as the veganism, I do eat a lot of beans and quinoa, so that's pretty good protein-wise. The difficulty lies in convenience, I guess. When I am busy with classes and/or work, it's often easiest for me to get pre-packaged things along with a home-made lunch. Now there is little that I can buy pre-made. I enjoy cooking and don't mind making my own things, but it really is energy and time consuming. I am still wondering if I should see a nutritionist.. I guess after the next allergist appt I can decide!

[SilverLining]

With food allergies, it is usually necessary to eliminate even trace amounts of allergens.  Nutritionist don't always understand that.  If you do go to a nutritionist, do NOT take their advice regarding allergies.  If she/he says "a bit won't hurt you" turn and run.

[Macabre]

Amy's has a few vegan things, yes?  They label well. Find out what you're really allergic to and maybe Amy's will be an option.

[lakeswimr]

What you describe does not sound like you have food allergies.  Food allergy symptoms are things like hives, swelling, difficulty breathing, vomiting, diarrhea, chest tightness, etc that occur very soon after eating foods and would be something you would notice happening.

Food allergies are not related to most of the things you listed that you have other than environmental allergies.  Many people who have food allergies also have environmental allergies.  I have environmental allergies but not food allergies.  My son has food allergies, though, and that's why I post here.

Food allergy testing by itself can't diagnose a food allergy.  A study by National Jewish Hospital found over 80% of people diagnosed just by test results were not allergic and ate the foods they had been diagnosed as allergic to with no reaction.  I you eat a food and do not have a reaction then you are not allergic by definition.  Many people test positive to many foods to which they are not allergic so your test results are not unique.

If you see a pattern of eating a food causing you to get hives or some other sign of a food allergy then that would be reason to test THAT particular food.  But the very high false positive rate of testing is reason that allergists recommend against testing foods unless there is reason to suspect a particular food is causing allergy symptoms.

There are all sorts of people out there who will say food allergies are responsible for all sorts of physical conditions but experts in the field would not agree.  There are wacky ideas and rip off scams galore so be careful where you go with this.  You could get ripped off and eliminate foods needlessly.

If you had really been allergic to soy and corn you would have had reactions to them.  And when you stopped eating them you would have seen the symptoms go away.  Generally speaking, reactions can often be very, very serious and require people to have an injection from an epi pen or similar device and call 911 and go to the ER.  not all reactions are so serious but if you were eating allergens you would know it. 

There are other food related conditions for which one would usually see a GI doctor, some quite serious.  If you think you have a problem with gluten you really should see a GI doctor.  Celiac is a serious condition and people with it are supposed to get bone density tests, blood tests to make sure there is no nutritional deficiency, etc regularly.  Insurance won't pay for these without a diagnosis so it is usually not advised to pull gluten before getting diagnosed.  It is quite popular now to go gluten-free.  If you pull gluten and feel better it could be gluten or it could be you are eating less processed foods or a number of reasons.  A good GI doctor will help you figure things out. 

[badjer]

What you describe does not sound like you have food allergies.  Food allergy symptoms are things like hives, swelling, difficulty breathing, vomiting, diarrhea, chest tightness, etc that occur very soon after eating foods and would be something you would notice happening.

Food allergies are not related to most of the things you listed that you have other than environmental allergies.  Many people who have food allergies also have environmental allergies.  I have environmental allergies but not food allergies.  My son has food allergies, though, and that's why I post here.

Food allergy testing by itself can't diagnose a food allergy.  A study by National Jewish Hospital found over 80% of people diagnosed just by test results were not allergic and ate the foods they had been diagnosed as allergic to with no reaction.  I you eat a food and do not have a reaction then you are not allergic by definition.  Many people test positive to many foods to which they are not allergic so your test results are not unique.

If you see a pattern of eating a food causing you to get hives or some other sign of a food allergy then that would be reason to test THAT particular food.  But the very high false positive rate of testing is reason that allergists recommend against testing foods unless there is reason to suspect a particular food is causing allergy symptoms.

There are all sorts of people out there who will say food allergies are responsible for all sorts of physical conditions but experts in the field would not agree.  There are wacky ideas and rip off scams galore so be careful where you go with this.  You could get ripped off and eliminate foods needlessly.

If you had really been allergic to soy and corn you would have had reactions to them.  And when you stopped eating them you would have seen the symptoms go away.  Generally speaking, reactions can often be very, very serious and require people to have an injection from an epi pen or similar device and call 911 and go to the ER.  not all reactions are so serious but if you were eating allergens you would know it. 

There are other food related conditions for which one would usually see a GI doctor, some quite serious.  If you think you have a problem with gluten you really should see a GI doctor.  Celiac is a serious condition and people with it are supposed to get bone density tests, blood tests to make sure there is no nutritional deficiency, etc regularly.  Insurance won't pay for these without a diagnosis so it is usually not advised to pull gluten before getting diagnosed.  It is quite popular now to go gluten-free.  If you pull gluten and feel better it could be gluten or it could be you are eating less processed foods or a number of reasons.  A good GI doctor will help you figure things out.

I do get itchy throat with some foods. You don't have to have an anaphylactic reaction to have food allergies. I was not saying that all my other conditions are from the food allergies- I was just asking if anyone knew of any connection. I have recently read, for example, that old injuries can be inflamed if you eat something you are allergic to. That could explain why my knees get inflamed constantly with no apparent trigger, or maybe not.

I am well aware of all the junk science out there and people who try to say they've found cures for food allergies and etc. and I avoid these things and use critical thinking to assess them.

I am not going to get testing for celiac. I do not have celiac. I was tested via blood and I've never been deficient in vitamins, etc... symptoms do not match up... etc... I do have a reaction to wheat though, and testing positive for barley allergy might explain this. The reaction is digestive and neurological though, not hives, etc. but again, from the literature I've read, hives are not the only reaction that shows a food allergy. I will not eat wheat again for 3 months so they can take a biopsy. I don't have the time or desire to do damage to my body and be out of work and school for 3 months to test something I know is not there.

I am going to go to a second allergist for another opinion and for blood testing.

[badjer]

Amy's has a few vegan things, yes?  They label well. Find out what you're really allergic to and maybe Amy's will be an option.

They do, but I don't eat microwave food- I'm talking grab-and-go things to carry with throughout the day. That's been tough with no nuts, soy, etc... the only thing I can think of is making my own snack bars, maybe.

[badjer]

With food allergies, it is usually necessary to eliminate even trace amounts of allergens.  Nutritionist don't always understand that.  If you do go to a nutritionist, do NOT take their advice regarding allergies.  If she/he says "a bit won't hurt you" turn and run.

TY for the advice! Do you think that is also so, even in cases with the allergen doesn't cause anaphylaxis?

[Mookie86]

I would research food sensitivities and food intolerances.  Some of what you are experiencing may fit one of those categories instead of food allergies.

[twinturbo]

@badjer

lakeswimr is trying to help you and is giving you accurate, best practices advice for IgE mediated allergies, what we on this board support each other on.

Please read the overview of allergies here for a reliable definition. http://www.foodallergy.org/section/faq1. This is the known medical condition with the objective symptoms we have. The FAQ includes testing information and how sensitivities/intolerances are different.

[Mookie86]

badjer, for grab-and-go food, how about hummus and veggies?

I am the queen of quick-and-easy vegetarian meals.  My family eats a lot of kidney beans/chick peas in salads, bean burritos, stir fry (I use tofu, but I know you can't do that), pasta and bean casseroles, lasagna (my tofu filling wouldn't work with the soy allergy, but is there a vegan cheese that's ok with your dietary restrictions?)....  You mentioned that you don't microwave foods.  Are you okay with prepared food cooked in an oven or on the stove?  You might look if you can eat any Gardein or Lightlife products.

I would make sure you really need to be avoiding soy.  Losing soy is huge for a vegan person.

[SilverLining]

With food allergies, it is usually necessary to eliminate even trace amounts of allergens.  Nutritionist don't always understand that.  If you do go to a nutritionist, do NOT take their advice regarding allergies.  If she/he says "a bit won't hurt you" turn and run.

TY for the advice! Do you think that is also so, even in cases with the allergen doesn't cause anaphylaxis?

I'm not a doctor or expert.  But my own experience (and that of many others but NOT all others) is that the more exposure to your allergen, the more severe the reaction.  My reactions were originally hives....then very bad hives....eventually they became anaphylactic.  Back then, very few allergens were listed as "may contain" and the allergist I was seeing was really not helpful at all.

So, I do realize some of the less common allergens are really difficult to avoid even trace amounts, but as much as possible, I'm a strong believer in making the attempt.  Especially for any allergens that are commonly anaphylactic or any allergens that YOU feel cause a more serious reaction.

[lakeswimr]

IgE food allergies by definition mean that the person could potentially have anaphylaxis.  Even a person who 'just' gets hives is at risk of future anaphylaxis.  Itchy throat from foods is usually what is called Oral Allergy Syndrome, OAS, which is different from IgE food allergies.  Usually (nearly all the time) OAS is not very serious and just involves not eating the food or not eating it during one's allergy season.  I have OAS.  I avoid my OAS foods in the fall and spring when they make my throat itch but the rest of the year I can eat them.  And I can eat them cooked all year.  This is pretty typical of someone with OAS.  My friend can't ever eat her OAS foods and even has had such severe throat swelling from OAS foods that she carries an epi pen.  This is very rare.  If all you get is an itchy throat I think that sounds like OAS and not very serious.  You can check with an allergist to be sure. 

No, old injuries do not tend to swell up or hurt from food allergies.  I'm sure you can find some alternative person to tell you that they do, though.  An allergist would not agree.  I would look to some other explanation about your knees.  There are many possibilities.  Lyme disease, arthritis, some type of injury that you keep re-injuring, lupus, etc. 

Testing positive to barley doesn't mean anything unless you have had a reaction to barley.  There are reactions people can have to foods that are non-IgE but IgE food allergy testing (the type you had) only tests for the immediate type of reactions that manifests in things like hives, swelling, coughing, stomach pain, drop in blood pressure, chest tightness, etc.  As I said, unfortunately these tests give a lot of false positives and are only about just under 20% accurate.  However, they are over 90% accurate for negative results.  They can't be used to diagnose a food allergy.  By itself a positive test means nothing.  If a person eats a food and doesn't have an IgE type reaction then by definition the person is not allergic no matter what the test says.  People can test even HUGELY positive and not be allergic.

I hope you find an allergist who is up to date on things.  Some are not.  Anyone who will diagnose you to things you eat without reaction based on test results alone isn't up to date.