What And How Do You React To Foods?

[T.H.]

If it's not an allergy, then it must be in my head, right?

Ugh.

I've been talking with friends about my reactions/allergies and such, and a few things have cropped up numerous times. How real can these actually be? No one else has issues with foods that AREN'T allergies, right? If they were, doctors would be talking about them; we'd KNOW.

I feel grumbly just thinking about it, but it does make me wonder sometimes. Just how common are reactions to foods that DON'T involve hives and itching, vs. those that do? I have no idea, and I really wonder if medical professionals do or not.

Has anyone EVER seen studies on this? I keep seeing studies where people believe they are allergic to foods, but very few of them test as officially 'allergic.' But I have never seen anything where the doctors talk to these same people and say: so, just why DID you think you were allergic to this food? What's been happening? Can we do a blind study to see if you can actually tell when you eat something you supposedly react to (instead of just scoffing at you)? We'd like to see what's going on. Sensitivity? Intolerance? A chemical on the foods that you actually ARE allergic to?

I never SEE that. Just the researchers going: uh uh, nope, you don't have an allergy to this food (you hypochondriac, you), bye bye now. Have a nice life.

My friends quote this type of study to me all the time, and this BUGS ME. IMO, the way these studies are presented in the news is so insulting to the participants, and unfortunately very similar to a number of doctors I've encountered. As though our taking a guess at what the problem is, and being incorrect, somehow makes our observations about the actual problem invalid. As though we can't tell when we feel like crap, when we have headaches, when we are so exhausted we can't get out of bed? Hey, maybe we didn't guess right what was causing the symptoms, but that doesn't mean the symptoms themselves don't exist.

I simply do NOT believe that we are all headcases, ya know? Some of us, okay, yeah.

IN ANY CASE, I was hoping some of you might be willing to share a little bit about what foods you react to and HOW you react to them, and whether they have tested positive as an allergy or not (if you've been tested). I'm also curious how quickly people have reactions to food, honestly. Like to know if I'm just hallucinating, or are more and more people having trouble with food that doesn't fall into the label of allergy, anymore?

So, I'll start it off.

My 'official' allergies: eggs, dairy, soy, white potato, coffee, sugarcane, white/navy beans

Reactions: No itching, no hives. Within 1-15 minutes, there is a sense of arms and legs being weighted down, brain fog, sore throat or swelling of the tongue and throat, aches and pains in the joints, muscles and bones. Gut pain soon after. Crushing exhaustion and the big D for the next 24-48 hours.

Foods I react to that are NOT official allergies...well, a few of the memorable ones :

Corn (and every member of the grass family) - 1-15 min. after consumption, sore throat or swelling of tongue and throat. Gut pain soon after, possibly. 24-48 hours after consumption, utter non-stop rage and frustration, increased pain for any soft tissue and nerve related issues I have, like carpal tunnel and herniated discs, to the point of making sleep difficult if not impossible due to the pain.

citrus - 1-5 minutes after consumption, the nastiest earache turning into a headache. Really, it's weird, but consistent.

peanuts - 1-2 min after consumption, HUGE headache.

Tree nuts - 1-15 min. after consumption, same symptoms as my official allergies. However, if I HAVE a few tree nuts, my reaction to any peanuts within the next few days is more severe.

So, anyone else?

And just on a last note, there is a story that has been popping into my mind lately. When I was trying to figure out what was going on in my life, I read about a blogger who has fructose malabsorption and talks about what her life has been like. She noticed she was having trouble with ALL fruit when she was in her teens. It made her miserably sick, but every doctor she talked to about it treated her like she was a huge hypochondriac. It's stress, it's anxiety, it's all in your head. Maybe I'm reacting to the sugars in fruit, she tells them.

No such thing, she's told. Humans don't have problems with fructose that way...now let's talk about that stress of yours.

Then over a decade later, people have finally started to figure out an interesting new condition: fructose malabsorption. Exactly what she's had, all this time.

I sincerely wonder sometimes if years from now, we will be having the same discovery about how our bodies respond to foods that aren't necessarily allergens, but aren't good for us for some OTHER reason. Or are allergens of a different sort. It's a thought I keep in my head when someone else says that this has to be 'in my head.'

[conniebky]

Your post makes a lot of sense to me. I know that there's other things that have nothing to do with gluten that are giving me reactions, but I can't figure out what they are.

There is no testing where I live except for food, which I passed with flying colors and molds and grass which I also passed with flying colors. Personally, I think those skin tests are a bunch of hogwash.

Everytime I walk outside (I live in Kentucky, lots of dense trees and grass, forestry) I sneeze and I sneeze so much, people say, "here comes Connie"...my eyes puff out, but, yeah, I'm not allergic to anything at all.

I think all the research money is spent on fatal diseases, and I think it should be. I'm with ya on your thoughts. I'm just trying one by one to figure it out. If I figure out it makes me react, I quit eating it. Like just this week, I ate that already cooked bacon and I had a SLIGHT reaction to it.

I have been in and out of testing for the past two weeks at least, and everything comes back normal. For this, I am extremely grateful. But it is very frustrating, and yes, my doctor who has been my doctor since 1974 told me i'm probably stressed.

There's not a gluten pill, or a celiac benadryl to prescribe, so they tell you you're stressed. Well, hell, everyone's stressed! Not everyone has explosive stomach and fainting spells. I so agree with your post. And you have a splendid writing talent.

[lucia]

This is controversial, but after hearing what you've been through with doctors I just have to state my opinion:

The entire world relies on American medical research to advance medical knowledge. I guarantee you that the cure for cancer, if it comes, would be impossible without the benefit of research from U.S. labs. For good or bad, funding for this research depends on its potential for commercial use. I have best friends who are scientific researchers, and they will be the first to tell you this. It is a highly political game. One of my friends is now steering her research away from flies and onto mice in order to make herself into a better job candidate. Projects focused on mice are more likely to be funded because the mouse shares more genetic characteristics with humans, so research on mouse subjects is more easily applied to humans.

Once this is your perspective, the attitude of the medical community towards something like food intolerances becomes easier to understand. If the cure is to just to stop eating a specific foodstuff, there is no commercial potential to researching food intolerances. Even if a medical researcher is interested in food intolerances, s/he is going to be hard pressed to find anyone to fund this research. This is especially true now as the NIH has significantly scaled back its grant money.

On the other hand, as we all know, having celiac is a huge inconvenience and not always easily controlled through gluten avoidance. As more and more people are diagnosed with celiac, it has begun to seem commercially viable to develop a pill to "control" the disease. In fact, I believe that it's suspected that at least one of the big pharmaceutical companies is working on this.

As for the doctors' attitude towards food intolerances and formerly celiac and fibromyalgia (which I have also suffered from): if they can't look it up in the research database, then it doesn't officially exist.

That said, no one can convince me that I don't have intolerances to soy and dairy (as well as gluten). All I have to do is eat soy or dairy and my stomach blows up like I'm suddenly 6 months pregnant. And, besides that, I get horrendous gas and cramps.

[bluebonnetrn]

I do not have anyone in my family with celiac but I found this website and this forum through a search for "powdered cellulose gluten" and signed up just to reply to this thread. Although I am excited about finding this community too.

My son has 37 food "intolerances" and yes these were confirmed by a doc with an actual lab test. I have some info that may help you and this forum has info that may help me. That's a community right?

Basically it depends on how you define the word allergy. In the last fifty years medicine has narrowed the definition to include only certain types of immune system responses that result in certain symptoms. IgE releases are responsible for "traditional" allergic reactions like hives, excema, rashes and anaphylaxis. Turns out that's not so traditional however. Apparently BEFORE the 1940's or so an allergic reaction was simply defined as an adverse reaction. I like that. Simple and makes sense. If you eat something, have an undesirable effect then you avoid that food. But sometimes it's not so easy to find which food it is.

So to get to the point the name of the test is MRT - mediator release testing. It tests for immune system reactions like IgG, C3, C4, cytokines and histamines. The blood is drawn at the doc's office and fed ex-ed to a lab in Florida. Here's the lab's info:

Signet Diagnostic Corp.

3555 Fiscal Court, Suite #8-9

Rivera Beach , FL 33404

561-848-7111

So there IS a test and there ARE docs who know about it. The doc will have to have a kit for testing in his office and sign the paperwork to send to the lab. Out of pocket cost is $375. You may have to bring this info to your doc and convince him though. Ours was an allergist.

Here is some more info. An allergist named Doris Rapp has written a lot of books on this topic and environmental allergies too. The one that I have read (am reading - it's long) is called "Is this Your Child"

She also has a website

www.dorisrappmd.com

If you google her name there is also a youtube video that shows up of her on the Donahue show in the late 80's

I am surprised too that more people and more docs aren't aware of and testing for this. There are so many lives that can be changed.

AS for my son his reactions are not life threatening. He is not going to keel over and die if he eats a piece of bread. But his quality of life is really affected. The reactions we have seen so far are bright red rash on the cheeks, vomiting (sometimes so severe that he has broken blood vessels under his eyes after vomiting), and increased mucous production. I have also suspected that his reactions are sometimes more behavioral like fatigue and confusion. Just this week he had a reaction which we have narrowed down to trace amounts of wheat and eggs in paprika that my mom used to cook. He was blatantly disobeying instructions just before his cheeks turned red and he vomited. My mom was flabbergasted to watch the whole scene play out in a definite progression. A few days later she was able to ask him what happened. Basically I was telling him to not do something which he repeatedly kept asking to do and then I told him not to ask anymore but he did anyway. My mom wanted to know why he didn't do what he was told. He said that he knew I had told him not to and he knew I was getting upset but he thought that I didn't understand what he was asking. Then he said that it was like he was there but he wasn't really there. He described it like he was a spectator watching the scene from the sidelines. Scary huh?

I understand the point about research being profit driven. But I know we would willingly pay for medicine which would allow him to eat a normal diet and have a normal life.

Originally I was thinking about trying the Gluten-free Casein-free diet. I am so glad we didn't. If we had tried that it wouldn't have worked since there were so many other things on his list. I would have seen no change (or minimal at best) and would have given up thinking this wasn't an issue. I am so grateful for this test. When I wrote the check I really thought I was writing this check for peace of mind. I thought the results would come back and I could tuck it away in the crazy mom file and not worry about it anymore. But we are not crazy. This is very real.

Jenn

[mommida]

Well because of Eosinophilic Esophagitus (or any area of the digestive tract)more research is being done for the body's response to "trigger" allergens.

Eosinophils are white blood cells that destroy host tissue. (auto-immune not a true "allergic response")

So now they are trying to determine if it a T-cell reaction or a MAST cell response. The body's reaction to an "allergen" can be very damaging and not be classified as a true "allergy". There is no Igg or Ige or noticable amount of histamine that shows up in lab tests for the patient.

[GFinDC]

Hi TH,

The reaction people usually mean when they talk about a food allergy is an IgE reaction. IgE is a type of immune cell. There are also IgG, IgA, IgT, immune system reactions. There may be more, I am no expert on it. The skin prick tests they do for allergies can only detect IgE rections. So they won't show anything if you are having an IgA reaction. I read somewhere that one of these immune cells is focused on the gut, and does it's work there. I don't remember which though. Maybe someone smart will come along and tell us. But anyway, the celiac reaction is not an IgE reaction. so tests for IgE won't help to diagnose celiac.

I had skin prick testing for hayfever allergies years ago, before I had any idea I had celiac. I tested positive for trees and grasses and a slight reaction to cats an dogs. I used to have heavy hayfever symptoms and pop anti-histamines like candy all spring, summer and fall. Now that I am glutenfree I rarely take an anti-histamine. So going gluten free has reduced my IgE reactions to trees and grasses and kitties and woofers somehow. My allergist doctor for hayfever never mentioned any connection between what I ate and hayfever though.

I suspect I have some food allergies, soy perhaps anyway. But I haven't been tested for them so can't say how I react really matters in regards to your question.

The best way I know to detect food intolerances is to do an elimination diet.

There are people with both food allergies and celiac or gluten intolerance on this board though. Your fast reactions do sound like food allergies (IgE) reactions.

[Juliebove]

I've been found to have no IgE allergies to food, but the allergist said to assume I have OAS to almonds and pistachios because when I eat them, the back of my mouth/throat gets itchy.

I have tested IgG to almonds. I immediately stopped eating them. But then one day I spaced out and licked a spoon with almond butter on it. Was making a sandwich for my daughter. That's when I had the reaction. Had been eating pistachios my whole life with no problems. But bought a bag at the health food store and had a reaction. Of course it is possible they may have been cc with almonds.

Eggs give me a very much delayed reaction. About 16 or 18 hours after eating eggs, I will have horrid stomach pains and then get the big D. If I am fool enough to eat eggs again the following day, the reaction will occur much more quickly. More like 2 hours later. How I know this is that I had stopped eating eggs when daughter was diagnosed IgG. But then I bought some from a salad bar. Ate them twice. Some months went by. Hard boiled some eggs for husband. He didn't eat them. Made egg salad. Ate it twice. Same reaction! Lightbulb went off in head. Then some time later the IgG allergy was diagnosed.

When we lived in NY, I often had stomach pains and the big D not long after eating breakfast. Because of my diabetes, I was trying to eat low carb breakfasts so was eating hard boiled eggs or cottage cheese for breakfast. At one point I was diagnosed IgG to dairy but that has gone away. So essentially I was eating these allergens every morning. I couldn't figure out why my stomach was so upset. I would get sick just as I got to the door to leave. Would dash back to the bathroom. Then drive daughter to pre-K then barely make it back home where I would get sick again. I chalked it up to the stress of the drive. Because really it was a miserable drive on busy streets and a bad road on the way home. Due to where we lived (military housing) I had to take one route there and another route home.

I did not learn of the food allergies for several years after that. Makes it super hard to make the connection when the reaction isn't immediate.

[T.H.]

... Your fast reactions do sound like food allergies (IgE) reactions.

I know, they do, don't they? I kind of wish they were, but I don't test positive on ANY prick tests, and I test positive for only a bare fraction of the foods I react to with blood tests. Things that make my throat swell up have nearly undetectable IgE levels. It's very, very weird.

[lucia]

Here's Peter Green about the lack of research and knowledge about celiac in the U.S. Just read this and thought about this thread.

Open Original Shared Link

Why are U.S. physicians spotting only 3 percent of cases? Part of the problem is that celiac disease, because it

[T.H.]

[kayo]

I totally hear you and I'm in the same boat. Today I had a bit of a breakthrough that may be of some help to you as I noticed we tend to react the same things.

The allergy doc who works with my GI doc took blood to test IgE reactions to a number of foods (RAST). I was positive to 2 foods, neither of which I've eaten in a year, oats & rye.

What he also noticed was that my blood work showed an unusually high level of histamine in my body. Previous bloodwork showed really high EOS (Eosinophils) which means I'm having some type of allergy reaction. He took more blood today to see if it's still high. If so I may have too much histamine in my body, a.k.a. a histamine intolerance. I never knew such thing existed.

I've been treated for SIBO and I have been following the FODMAP diet (suspected fructmal but test was neg) and while I see some improvements I still feel like crap and have constant D. Even my bland diet of rice, bananas, and chicken makes me feel ill. I also have an occasional OAS reaction to bananas, strawberries, chocolate and almonds but IgE is negative on those foods. I can have a bit of lemon or lime but other citrus makes my face swell (paratoid glands) like crazy and my throat itches and is sore for days. I also tend to get raspy and lethargic.

So I looked up histamine when I got home and found this information. So many of the foods high in histamine correspond with what's been bothering me.

Foods high in histamine:

1. Champagne (76 mg/4 Oz.)

2. Sauerkraut (23 mg/3.5 Oz.)

3. Tofu (as high as 22 mg/3.5 Oz.)

4. Parmesan Cheese (15 mg/3.5 Oz.)

5. Beer (7 mg/pint) Beers vary in histamine content, with top fermented beers being higher in histamine.

6. Sausage (6 mg/3.5 Oz.) Fresh sausage is often lower in histamine than the cured/aged sausage.

7. Blue Cheese (5 mg/3.5 Oz.)

8. Red Wine (3.5 mg/4 Oz.)

9. Eggplant (3 mg/3.5 Oz.)

10. Tomato Ketchup (2 mg/3.5 Oz.)

11. Canned Fish (tuna, salmon, herring) (2 mg/3.5 Oz.)

(I'm soy and lactose intolerant and beer always bothered me, but gluten free now anyways, wine gives me a raging headache if I have more than 1 glass)

*Certain foods (even food that is low in histamine) can stimulate the release of histamine from mast cells (a type of immune cell). These foods include bananas, tomatoes, strawberries, pineapple, nuts, peanuts, shellfish, spinach, egg white and chocolate.

(source: Open Original Shared Link)

I bolded the foods that I seem to react to.

I wonder if this is the missing link?

edited to add: forgot to mention that doc put me on a med that inhibits histamine in the gut (histamine in gut causes D - who knew?) and suggested I also use an over the counter allergy med. I'm to do this for a month and see if it makes a difference.

[T.H.]

Thank you so much for this reply!

I don't know that they have looked at histamine levels for me (I'll have to check - far too many blood tests, LOL), and I will definitely go take a look at some of the foods - red wine definitely does me in, and all canned fish has made me react REALLY badly, so I'm very curious to look into this!

Although I just had a breakthrough yesterday myself! My allergist said he wondered, with all my throat swelling, if it might actually be something else. So yesterday, had a camera down my throat to record what happens when my throat swells up, and it's actually my vocal cords closing on me when I try to breath.

It's called paradoxical vocal cord dysfunction and it's being set off whenever I run into the foods that are allergens or irritants. Weird, huh? But SUCH good news, because this sort of thing has therapy so whenever it is triggered, you can do exercises to make it stop and suddenly, you can breath again. Still feel pretty crummy, but it's not life threatening if I can make it stop, woo hoo!

Considering that last year, I was in the ER and the doc could see the swelling in the throat, this makes me feel so hopeful. Because my throat was not swollen at all during the latest test, which to me seems to mean that my reactions HAVE been improving, just like my original doctor had said they would. I've just been having this other thing that made me think the swelling was still going on. I'm just...I am so hoping this will help!!

I'm SO glad I found a good doctor who found this! It's just so out there, who woulda thought?

Good luck on the histamines, and again, thank you for the information. Any good website recommendations that seemed to have good resources for this, by any chance?

[sweeeeet]

Wheat, gluten, milk, ice cream, (not sure which affects me in which way but anyway) I get really spacey and fatigued within 15 minutes of having anything like that in my system. my eyes get really heavy and start to hurt, my face goes numb and gets hot, also my stomach begins to clench up horribly and I start laughing and or crying uncontrollably. It's so embarrassing! Then I get terribly distended and bloated. Then I get shooting pains in my arms and hands, a rash all over my chest that is red and hurts, but its only on my chest, nowhere else. Within a few hours, I get gas, stomach cramps and diarrhea that lasts a few days.

Greasy foods like hamburgers, kielbasa, etc. give me horrible acid, I can't digest these well, it always comes back up and irritates my throat so much.

Eggs give me horrible indigestion and bloat.

two things I really miss are having a bowl of Cheerios for breakfast, and my turkey on marble rye that I used to have for lunch at work. Fuhgeddabowdit! Alas, I eat fruit and fruit. Ice pops are good, though. Love those.

[kayo]

T.H., I'm so glad you had a breakthrough too! What an interesting discovery on the swelling vocal chords. And what luck that there is a therapy that can help.

I almost didn't go to see the allergist in my GI doctor's group. I've had allergists in the past that were so not helpful that I had no hope that this doc would be of any use. In fact I started this journey 5+ years ago with an allergist because I knew food was a trigger. If only that doc had a clue I wouldn't be in the boat I am today. I'm glad I went to see this new allergist. This is the doc who seems eager, willing and happy to put the pieces of the puzzle together. In fact he got my records from that first allergist to help him investigate my issues. I'm impressed that he knows so much about RA, RA meds, gluten and other food intolerances and how this can get all jumbled up and make me miserable. I was so thrilled that he had a theory (histamine levels) that it took all my energy not to bear hug him right there on the spot.

I record symptoms in my food diary but never thought to track coughing, sneezing and raspiness since I've always had these things and it never really occurred to me that it could provide a clue as to what's going. I started to pay attention last night and realized I often have sneezing fits or coughing after eating/drinking. It seems so benign. Definitely not what I would call an allergy attack with the full on sinus, etc. issues so I never really paid attention.

I'm still looking for some good histamine resources. I will post when I find some.

Happy Day!

[Bennie]

Food effects our hormones, which effect our mood and whole body.

I did not have severe symptoms, uncomfortable, but nothing very serious when I went for my testing in France (I don't know what the test is called in North America). I was bloated and feeling very tired (gluten and casine[milk] were the culprits). When I got the test results the doctor was very surprised just how high the results were... (not good)

So for me I really needed to change me diet and felt uncomfortable... but maybe for someone else they would have felt very sick, and for another person maybe they wouldn't notice the symptoms at all. We are all very different people, with different bodies.