Allergy: I do not think that word means what you think it means
I thought I knew what a food allergy was. If a person consistently gets symptoms like rashes, swelling, itching and severe GI symptoms within minutes of consuming a food--that's an allergy, right? Or maybe not.
Maybe I don't know what I thought I knew about allergies.
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When I wrote the series of articles about allergy testing and treatment a couple of months ago, I was very frustrated with the lack of information, reliable testing, and treatments for allergies, as well as with some negative experiences we'd recently had with medical professionals.
That post was a compilation of some of the information I'd been reading. But it was also a venting of my frustrations, and my wording and some of my data interpretation was colored by those emotions. I later ended up wishing I hadn't submitted the post to Pediatric Grand Rounds, as explained here.
There were a few things I didn't understand at that point, which I am just now beginning to understand.
One of the most important is that "allergy" doesn't mean what I thought it meant. At least not to Baby E's allergists. In fact, to many allergists, "allergy" does not seem to mean what it means to the rest of the world.
Most people who are reasonably well-informed understand the difference between a food reaction that involves an abnormal response of the immune system versus a reaction that simply involves having difficulty digesting a food. Generally, we can accept that lactose intolerance is different from a milk allergy.
But most of us would assume that if a food consistently causes immediate severe reactions, especially if those reactions include symptoms like rashes or wheezing, it must be an allergy.
But I've learned that is not necessarily the case. Apparently most or all of the symptoms of allergies can also be triggered by causes other than a "true allergy." Differentiating between allergic and non-allergic adverse reactions to food is more complicated than one might think.
It seems that in order for the scientific and medical community to consistently agree that an allergy is present, two things have to be confirmed: IgE antibodies in sufficient quantity, and a set of typical allergy symptoms with sufficient severity and reproducibility. In the absence of either of those elements, many professionals will not consider the patient to have a true allergy.
That may be why so many people find themselves in a situation where they have adverse food reactions, but can't get anyone to take them seriously. They may have all the symptoms of allergy, but negative test results. No IgE, no allergy. Or they may have positive test results, but symptoms that their doctor doesn't consider severe enough or typical enough to qualify as a clinical allergic reaction. Many doctors and researchers feel that in the absence of certain symptoms such as hives or wheezing, even a positive test result and adverse reactions together don't add up to a "real" allergy.
Since, to some extent, the interpretation of test results and symptoms is subjective, the patient may get completely different answers from two different allergists. One doctor may believe the patient has a potentially dangerous allergy, while another will diagnose them as having no allergy at all.
Baby E's case is a good example of this difficulty in diagnosing allergies.
The first two times she had allergy testing done, starting when she was 11 months old, her skin prick tests had a combined total of 8 positive results.
As time has passed, it's become clear that to a couple of those foods (corn and soy) Baby E gets immediate reactions (within 5 to 90 minutes) to extremely trace amounts of even highly-refined derivatives. These reactions can include rashes, itching, facial swelling, congestion or runny nose, GI symptoms including stomach pain and diarrhea, loss of appetite, and extreme behavioral changes such as repetitive head-banging, regression in speech and other skills, screaming and flailing for hours or days at a time, becoming antisocial, and acting lethargic and unresponsive.
Since Baby E is only 19 months old, it's hard to tell exactly what she's experiencing, but it's obvious she's miserable. Dosing her with Benadryl significantly reduces her discomfort and makes the rash and swelling disappear within 10 minutes or so. Without antihistamine treatment the reaction may go on for hours.
The other 8 or 10 foods that cause adverse reactions for her seem to trigger primarily GI symptoms, often accompanied by behavioral changes such as those noted above. These may happen within minutes after initially consuming a small amount of the food, or may require a few exposures for a reaction to build up over the course of a day or two. Benadryl doesn't help as much with these reactions.
Baby E's various reactions can be tested multiple times by adding and removing the food, with similar results each time. We are by this point pretty sure that she reacts to all of the foods to which she tested positive, plus a few more. When not exposed to a triggering food, she is a completely different child. Thankfully, that's most of the time now.
We've now had two allergists tell us that Baby E does not have allergies.
The first allergist felt that all or most of E's positive skin-prick tests were "false positives" because her clinical symptoms did not match his definition of allergy: she didn't get asthma, wheezing or systemic giant hives. Her positive results had relatively small wheals (none more than 7mm larger than the negative control) and her rashes seldom appear over her entire body at once. In his opinion, that's not a real allergy.
The second allergist seemed to feel that her reactions were serious allergies, and even prescribed a second set of epi-pens because he felt we needed more than two readily available.
Then we did the ImmunoCAP blood IgE test. When everything came back negative on that, he did his own brand of skin-scratch testing using a different method than the previous two allergists had done. When that also came back negative, he decided E's previous tests were invalid, told us that E did not have allergies (although he diagnosed her with eczema), and said he couldn't help us since he didn't deal with non-allergy adverse food reactions.
I asked him what things other than IgE antibodies could mediate an allergic reaction, and he said, "None."
In both cases, the allergists agreed that Baby E had severe and complicated issues of some sort, but were not willing to continue treating her or trying to help us figure out and manage her food reactions. We were simply advised to figure it out on our own via trial and error and avoid any food that causes adverse reactions.
If Baby E truly doesn't have allergies, I would have thought the initial skin-prick tests would have been negative, or she would have had no symptoms to the foods that tested positive. Apparently I don't understand as much about allergies as I thought I did.
Skin-prick or RAST tests are considered fairly accurate in diagnosing IgE regulated reactions. But with non-IgE reactions they are basically useless. In the absence of an accurate test, researching and learning about other adverse reactions is much more difficult and probably less appealing to scientists.
There seems to be very little understanding of how non-IgE adverse reactions are mediated. For most of them, nobody really knows what causes them or how to treat them. There don't seem to be many people interested in trying to find out.
For the most part, it seems intolerances are minimized or thought to be relatively unimportant. That really frustrates me, as I discussed here.
I'm still not sure which category Baby E's reactions fall into. After the first allergist said Baby E's first reactions weren't really allergies, I was convinced he was wrong. So I got a second opinion. Now that two board-certified allergists have agreed that Baby E does not have allergies, I don't know what to think.
So far Baby E has tested negative for celiac disease, eosiniphilic esophagitis, and the other possibilities the GI specialist has considered. We're seeing the GI specialist again this week. The naturopath has some other ideas yet to try, too.
Whether the reactions are actual allergies or not, for now all we can do is try to identify and avoid the triggering foods.
Maybe I don't know what I thought I knew about allergies.
######################
When I wrote the series of articles about allergy testing and treatment a couple of months ago, I was very frustrated with the lack of information, reliable testing, and treatments for allergies, as well as with some negative experiences we'd recently had with medical professionals.
That post was a compilation of some of the information I'd been reading. But it was also a venting of my frustrations, and my wording and some of my data interpretation was colored by those emotions. I later ended up wishing I hadn't submitted the post to Pediatric Grand Rounds, as explained here.
There were a few things I didn't understand at that point, which I am just now beginning to understand.
One of the most important is that "allergy" doesn't mean what I thought it meant. At least not to Baby E's allergists. In fact, to many allergists, "allergy" does not seem to mean what it means to the rest of the world.
Most people who are reasonably well-informed understand the difference between a food reaction that involves an abnormal response of the immune system versus a reaction that simply involves having difficulty digesting a food. Generally, we can accept that lactose intolerance is different from a milk allergy.
But most of us would assume that if a food consistently causes immediate severe reactions, especially if those reactions include symptoms like rashes or wheezing, it must be an allergy.
But I've learned that is not necessarily the case. Apparently most or all of the symptoms of allergies can also be triggered by causes other than a "true allergy." Differentiating between allergic and non-allergic adverse reactions to food is more complicated than one might think.
It seems that in order for the scientific and medical community to consistently agree that an allergy is present, two things have to be confirmed: IgE antibodies in sufficient quantity, and a set of typical allergy symptoms with sufficient severity and reproducibility. In the absence of either of those elements, many professionals will not consider the patient to have a true allergy.
That may be why so many people find themselves in a situation where they have adverse food reactions, but can't get anyone to take them seriously. They may have all the symptoms of allergy, but negative test results. No IgE, no allergy. Or they may have positive test results, but symptoms that their doctor doesn't consider severe enough or typical enough to qualify as a clinical allergic reaction. Many doctors and researchers feel that in the absence of certain symptoms such as hives or wheezing, even a positive test result and adverse reactions together don't add up to a "real" allergy.
Since, to some extent, the interpretation of test results and symptoms is subjective, the patient may get completely different answers from two different allergists. One doctor may believe the patient has a potentially dangerous allergy, while another will diagnose them as having no allergy at all.
Baby E's case is a good example of this difficulty in diagnosing allergies.
The first two times she had allergy testing done, starting when she was 11 months old, her skin prick tests had a combined total of 8 positive results.
As time has passed, it's become clear that to a couple of those foods (corn and soy) Baby E gets immediate reactions (within 5 to 90 minutes) to extremely trace amounts of even highly-refined derivatives. These reactions can include rashes, itching, facial swelling, congestion or runny nose, GI symptoms including stomach pain and diarrhea, loss of appetite, and extreme behavioral changes such as repetitive head-banging, regression in speech and other skills, screaming and flailing for hours or days at a time, becoming antisocial, and acting lethargic and unresponsive.
Since Baby E is only 19 months old, it's hard to tell exactly what she's experiencing, but it's obvious she's miserable. Dosing her with Benadryl significantly reduces her discomfort and makes the rash and swelling disappear within 10 minutes or so. Without antihistamine treatment the reaction may go on for hours.
The other 8 or 10 foods that cause adverse reactions for her seem to trigger primarily GI symptoms, often accompanied by behavioral changes such as those noted above. These may happen within minutes after initially consuming a small amount of the food, or may require a few exposures for a reaction to build up over the course of a day or two. Benadryl doesn't help as much with these reactions.
Baby E's various reactions can be tested multiple times by adding and removing the food, with similar results each time. We are by this point pretty sure that she reacts to all of the foods to which she tested positive, plus a few more. When not exposed to a triggering food, she is a completely different child. Thankfully, that's most of the time now.
We've now had two allergists tell us that Baby E does not have allergies.
The first allergist felt that all or most of E's positive skin-prick tests were "false positives" because her clinical symptoms did not match his definition of allergy: she didn't get asthma, wheezing or systemic giant hives. Her positive results had relatively small wheals (none more than 7mm larger than the negative control) and her rashes seldom appear over her entire body at once. In his opinion, that's not a real allergy.
The second allergist seemed to feel that her reactions were serious allergies, and even prescribed a second set of epi-pens because he felt we needed more than two readily available.
Then we did the ImmunoCAP blood IgE test. When everything came back negative on that, he did his own brand of skin-scratch testing using a different method than the previous two allergists had done. When that also came back negative, he decided E's previous tests were invalid, told us that E did not have allergies (although he diagnosed her with eczema), and said he couldn't help us since he didn't deal with non-allergy adverse food reactions.
I asked him what things other than IgE antibodies could mediate an allergic reaction, and he said, "None."
In both cases, the allergists agreed that Baby E had severe and complicated issues of some sort, but were not willing to continue treating her or trying to help us figure out and manage her food reactions. We were simply advised to figure it out on our own via trial and error and avoid any food that causes adverse reactions.
If Baby E truly doesn't have allergies, I would have thought the initial skin-prick tests would have been negative, or she would have had no symptoms to the foods that tested positive. Apparently I don't understand as much about allergies as I thought I did.
Skin-prick or RAST tests are considered fairly accurate in diagnosing IgE regulated reactions. But with non-IgE reactions they are basically useless. In the absence of an accurate test, researching and learning about other adverse reactions is much more difficult and probably less appealing to scientists.
There seems to be very little understanding of how non-IgE adverse reactions are mediated. For most of them, nobody really knows what causes them or how to treat them. There don't seem to be many people interested in trying to find out.
For the most part, it seems intolerances are minimized or thought to be relatively unimportant. That really frustrates me, as I discussed here.
I'm still not sure which category Baby E's reactions fall into. After the first allergist said Baby E's first reactions weren't really allergies, I was convinced he was wrong. So I got a second opinion. Now that two board-certified allergists have agreed that Baby E does not have allergies, I don't know what to think.
So far Baby E has tested negative for celiac disease, eosiniphilic esophagitis, and the other possibilities the GI specialist has considered. We're seeing the GI specialist again this week. The naturopath has some other ideas yet to try, too.
Whether the reactions are actual allergies or not, for now all we can do is try to identify and avoid the triggering foods.
Labels: allergies
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Posted by purple_kangaroo at 1:40 AM[Permanent link]
13 Comments:
Hi PP,
I do have some understanding of your frustration, I think.
I'm going to say that the reason that I labour the point about the difference between allergy and intolerance is because, in the UK, we have fewer clinical allergists than you do in some single hospitals in the US. It is almost impossible to get a referral to a consultant allergist or a dietitian in the UK: the dietitians that are seeing young people are complaining that they are swamped by young people who believe that they have dairy or wheat intolerance when they have neither.
I don't think that we can easily talk about the comparative quality of mild and severe allergies/intolerances. The bad and unpredictable thing about allergies is that you can not predict when they will move from mild to severe/life-threatening.
Labelling does need to be much better: that is undeniable.
Regards - Shinga
Hey PK, I thought this was a good post. Particularly since we are looking into Kenzie problems being food intolerances as well. I did notice when I checked out the link that it did say "Oral food challenge—which should be done in a medical setting because it can induce severe vomiting, diarrhea, dehydration, or hypotension". Apparently the allergist hasn't read this. I think that is scary. Thanks for writing it though I thought is was a good post as I said and if you can I would love to see any other information you have dug up about food intolerance since I am having a hard time finding much information that doesn't pretty much blow it off as something little. Kenzie like Baby E is frequently uncomfortable (just more able to comunicate since she is older) after eating certain foods but I am having a hard time breaking it down to just what food might be causing it. We have to redo the lactose challenge since we all ended up with the flu the weekend we were supposed to give dairy to her after taking her off of it for a week. I do think it is more then just dairy though, but like I said I just don't know how to break it down to specific foods. Especially since she is in school and I don't always know if she is eating something at school different from what we are having at home.
Shinga, I think that both of our allergists felt we were wasting their time. But with that set of symptoms, to me it makes sense to at least do allergy testing.
It's really too bad that there's such a lack of adequate care in the UK, and that probably does make triage more important. Don't the GPs educate people about the usefulness of keeping a food diary or eliminating and then reintroducing suspected foods, before they decide whether they need to see an allergist or not? That would seem to be a pretty basic first step.
If the person DOES have consistent, reproducible symptoms beyond just gas, bloating, etc. when consuming a particular food, it seems it would make sense to see an allergist.
Most specialists would expect that screenings rule out more cases of a disease than they confirm, wouldn't they? I mean, nobody is going to fault someone for going to a specialist for a mammogram when they find a lump, even if, as is most likely, it turns out to be something completely benign.
If a person has symptoms that could point to a certain condition but the tests show that they don't have the condition, were they unfairly wasting medical resources to get it checked out? I don't think so.
We just had allergy testing done for my 4.5 year old because she has been constantly experiencing stomachaches and diarrhea, coughs and snores frequently at night, gets frequent runny noses, and occasionally complains of her mouth itching. Since I haven't been able to pinpoint specific causes and we were in for Baby E anyway, it seemed sensible to at least do a round of allergy testing to see if anything showed up.
In a situation where resources were so much more limited, as in the UK, I probably would not have taken her in for testing before doing more detailed record-keeping and maybe adding and removing a few foods to try to pinpoint causes. It's difficult, though, because so many resources advise that people not remove foods from their diet without seeing an allergist first, and yet that simple step might eliminate the need for some of those evaluations.
My4kids, here's a pretty good article about food allergy vs. intolerance that talks about keeping a detailed food diary to help identify triggers. Here's another that talks about elimination diets.
Thought-provoking post, as always, PK!
That's a real shame, PK, because you were doing the right thing in taking her along and not eliminating, all by yourself. I think that rule-out testing in your circumstances is essential, rather than an optional extra.
No, in the UK, it is unusual for a GP or Practice Nurse to feel confident enough to advise you on how to implement an elimination diet - particularly if it might take a year or so for you to obtain a referral elsewhere. We've also had a few notorious cases in the UK where a GP did try to manage challenge testing and the child died.
Thanks for the links - I'll take a look.
Regards - Shinga
Kanga,
I have to wonder if your allergists were "just" allergists or the more reliable allergist/immunologist. The second group is familiar with non-IgE mediated allergy and test for both. The first, not so much. I'm beginning to think that is the difference between the "good" allergist and the "not-so-good" allergist.
I know my allergist is both. Board certifications should say they rotated in both. Now, they tend to specialize in one or the other - most immunologists end up supporting transplant surgery, AIDS, or doing research related medical care. (Immunological disease is very complicated.) Allergists tend to be community based physicians who have ongoing relationships with their patients. I realize that I'm lucky in that 3 different allergists have confirmed my corn allergy in some form or another (all IgE mediated). My problem is always with non-allergists.
Also, though I say I'm allergic to alcohol - that's technically impossible. I have an extreme chemical sensitivity to ethanol and ethyl alcohols which cause hypotension, nausea, and flushing - when I'm lucky. Why is this a chemical sensitivity? There are no proteins in alcohol. The most basic way to explain the difference between these are protein reaction or not a protein reaction.
An allergist/immunologist knows this. I have to wonder at the quality of medical personnel you are dealing with. In my neck of the woods you have been tested for EVERYTHING else before it is considered allergy. It really is supposed to be a diagnosis of last resort - belonging to what DB or DB's Rants calls the long-tail.
I know this is not something a lot of people want to admit, but, true IgE mediated allergy, and even anaphylactoid reactions affect less than 3% - 5% of the population. It is one of the reasons that ERs are so bad at dealing with those of us who have the symptoms. Think about this, I have had only 3 anaphylactic episodes outside of a doctor's office - and one of them was when I was on a date with a doctor so I didn't end up in the ER. I've been dealing with my allergies for over 20 years. This should give an indication of the rarity of the event - let alone the disease. There is a reason anaphylaxis and anaphylactoid disorders are on the orphan disease list.
On the brighter note, AIDS research has led to some amazing breakthroughs for ALL immunological diseases. The problem is most people - including doctors and nurses - don't know how to follow the more unusual threads of research. A good librarian or researcher can help with that. There is also the ranking of research which can make or break your case.
I think I'm going to post on my own blog about how to do research effectively. This post is already getting way too long :-).
Good Luck in finding out what is really wrong with Baby E.
Pax,
MLO
Thanks, Liz.
MLO, all three of the allergists we've seen (the second, Dr. "nobody is allergic to rice" saw us once while allergist #1 was out on paternity leave, and did some testing) are all board-certified allergists/immunologists, and seem quite well-qualified to me. They're also the only allergists/immunologists in the area who treat children as young as Baby E.
I came across some interesting PubMed articles about reactions to alcohol while browsing around recently. You've probably already seen them, but I found them fascinating:
Alcohol, IgE and allergy.
Ethanol as a cause of hypersensitivity reactions to alcoholic beverages.
Urticarial reaction caused by ethanol.
There are a number of other related articles linked in the sidebars on each of those pages.
Shinga, the NHS is a mystery to me. Is the main problem that people think they have food intolerances when they don't, or that GPs are suggesting food intolerance or allergy when it's not a likely cause for the given symptoms, or that GPs and the public in general aren't educated enough about these things?
MLO, you said, "I know this is not something a lot of people want to admit, but, true IgE mediated allergy, and even anaphylactoid reactions affect less than 3% - 5% of the population."
That's just the food allergies, though . . . anaphylaxis is not common, but it's much more prevalent than that. Most cases of anaphylaxis/anaphylactoid reactions are caused by medications and contrast mediums. I'll probably do a post on anaphylaxis statistics soon.
This is Katia but I don't know my password anymore cause it's been so long. I have my own thoughts on this subject. I think the difference between a alergy and an intolorance is that often alergy's are something that is life long and intolorances can get better or change from time to time. Sometimes worse sometimes better. They can be more suttle sometimes and their long term effect can sometimes be just as effective as the shortime healthwise although with the immediate obvious effect people find treatment quicker and learn quicker what foods to avoid but with slow or sporatic effect then it's harder to keep track of just what food caused it and most people don't think of food propblems they just blame it on sickness. Well with my younger girls I had problems with constant diarehea and found it got better when I gave them goats milk instead of cow's and eliminated wheat and processed foods and excess sugar from their diet. It took about a year before I started laxing on the diet. At first they took a while to have good bowels then little slip ups on the diet would give them problems again. Now I let them have snacks and things when others give it but I keep their meals healthy and therefore keep their bodies in good condintion to where they can wash out those things that their bodies don't like without getting diarehea. So my theory is that food intolorances can be worse when people fill their bodies with foods their bodies don't like and less severe when they have undergone a cleanse and their body has no trouble just washing out the food. I have arthritis and I don't think I will be as lucky as my kids. Almost anything makes me hurt it seems. I have to live my life close to the cave man diet (look the cave man diet up on the internet) to get rid of my arthritis and keep it away. It's a struggle in a world of overly processed foods. But we eat brown rice noodles instead of flour noodles and oatmeal instead of malt-0-meal. I am struggling right now because I just hand a baby and my arthritis went away so I cheated on my strick diet quite a bit gained too much weight and am back to square one. So I am in pain and trying to be really strick with what I eat. Some days I get worse again and wonder what it is I have to still eliminate. besides what I mentioned I also can't eat tangerines, oranges, grapefriut, white rice (which might not be an alergy but it is an intolorance), spelt, hotdogs, bananas. I only have apples and grapes but in very small amounts. When I loose weight and get my arthritis under control then I can tolorate some of these to a small extent. But now I have to be strict ack it's killing me. I write here because I feel like this site gives me some support in it's way to hear others stories. Thanks for all your stories.
I won't go into all of the details but I have twins that have anphylaxis and left school in an ambulance several times lastyear do to nut exposure. They are identical 1 tests positive for allergies one tests negative been to 3 top specialists East and West coast. This is the book and the Dr. that sorted it out. Understanding and Managing your childs food allergies. Scott H. Sicherer, M.D. I also test negative but, have severe food allergies. Tryptase levels do not always move with food allergies and Ige are complicated, have you checked the c compliments?
Scanned through your blogs re:baby e, possible fructose malabsorption, etc.. Just wondering if you'd ever solved her problems with eczema and abdominal pain because my 10 month old son also has both and can't seem to tolerate any foods, including when I was just solely breastfeeding the first 9 months and doing an elimination diet down to white rice and fish, then rice and meat, then even meat and veggies only.
I am having a very similar experience with my third baby who is now 17 months old- the symptoms, the experience with medical professionals, everything. I am so happy for you that your daughter is better now, was just wondering how the allergies resolved? Can't find any follow-up posts to this.
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