So it's not a virus

Having had allergy testing done last year is giving me huge insights into my "fibromyalgia/chronic fatigue" flare-ups and the "colds" that last for weeks.

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The last two or three weeks have been rather miserable. I would have blamed it on something nebulous, but then I realized: The maple trees in the back yard and the birch tree in the front yard were blooming. Yesterday I read in the newspaper that the period spanning the end of April and beginning of May is when tree pollen in our area reaches its all-time high for the year.

We got to go to the coast with the Malamute Rescuer family this weekend. We had such a wonderful time, and I felt great all weekend. Now that we're back home, I feel tired, grumpy and achy again, and my "cold" is back. Even though I got approximately the same amount of sleep last night as I've been getting all weekend, I slept restlessly and feel much more tired than I did waking up at the beach.

Tree pollen is winding down for the year, though. We should have a few weeks' reprieve before the grass pollen kicks in. Apparently our part of the country boasts the highest grass pollen counts in the USA--last year they were over 1,000 ppm (200 is considered very high) in a measurement taken within a half-hour or so of us.

When I had the allergy testing done, they said, "No wonder you don't notice much variation in symptoms from one season to the next. You react to allergens in every season!"

At least it's nice to know what's causing it. I'm seriously considering looking into finding a non-drowsy antihistamine or trying allergy shots.

We had a marvelous time at the beach. More on that later. Right now I have to get the kids ready for school and call the shellfish hotline to find out if it's safe to cook and eat the fresh live mussels we picked up on the beach (for DH and the older kids, anyway).

Intolerances deserve attention too

[Note: this was originally part of the post titled Allergy: I do not think that word means what you think it means. I've moved it into a separate section to make the original post more manageable.]

"True" IgE-regulated allergies are often thought to be more important and more deserving of attention and research than non-IgE regulated adverse reactions. I think the current approach is a bit unbalanced, and here's why:

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It's often said that intolerances are usually milder than allergies, and that allergies can occur to trace amounts of foods while intolerances are usually dose-related. But that's not necessarily true.

For instance, gluten intolerance can be triggered by extremely trace amounts of gluten, such as cross-contamination from foods processed on the same equipment as items containing gluten. Corn intolerance is another "non-allergy" in which it seems particularly common for trace amounts of highly refined corn derivatives to cause severe reactions even in people who test negative for corn allergy. That's certainly the case with Baby E and many others on The Avoiding Corn Forum.

There's a misconception that intolerances only cause minor symptoms such as indigestion. But non-IgE food reactions can have all the same symptoms as an allergy, or others just as uncomfortable.

The consequences of an IgE-regulated allergy can range from mildly annoying symptoms such as an itchy mouth, mild rash or runny nose to a severe, multi-systemic debilitating or even life-threatening reaction. Likewise, non-IgE reactions can range from mild to severe. A person may just get a stomach ache when they eat too much of a certain food (as is the case with many intolerances), or they may experience symptoms such as severe vomiting/cramping/diarrhea, internal bleeding, itching, rashes, headaches, difficulty breathing, changes in heartrate or blood pressure, malabsorption, failure to thrive, or even anaphylactoid reactions.

A truly life-threatening adverse food reaction is rare with both an allergy and an intolerance. An intolerance may be less likely to kill you, but a fatal anaphylactoid reaction will kill you just as dead as fatal anaphlyaxis will. Untreated autoimmune or metabolic food intolerances can certainly be fatal.

Intolerances may be mild more often than allergies, but a moderate to severe intolerance can make life just as difficult and uncomfortable as a moderate to severe allergy can. A severe intolerance can be more debilitating and difficult to manage than a mild allergy. Intolerances can be especially difficult to manage since some of the most common intolerance triggers, such as corn and MSG, are less well-regulated and labeled than the top 8 allergens are.

A lot of people get up in arms about people lumping together food allergies and other adverse food reactions. How dare anyone think an intolerance could be in the same class as a REAL allergy? It's touted frequently that, while maybe 15-30% or more of people experience some sort of food intolerance, only a very small percent (somewhere between 1% and 8%, depending on the reporting source and the age range) have "true food allergies." Food labeling laws and other policies are largely based only on the IgE-regulated reactions.

Intolerances are harder to study than allergies, but they affect far more people than allergies do, and their consequences can be severe.

Things like research, accurate labeling, education, and effective treatments are important for all types of adverse food reactions. For both allergies and intolerances, the primary treament is to avoid the foods triggering the symptoms. Pinpointing the trigger foods and being able to avoid them is equally important for managing moderate to severe reactions, whether technically they are allergies or not.

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.

Another day, another doctor

I've been thinking a lot about Baby E's food reactions this week. Since they don't seem to be IgE-regulated, that could be a very good thing. It opens up some possibilities that would be treatable, and that she would be much more likely to grow out of.

For instance, it's likely that the issue could be one with damage to her gut--perhaps something like an eosiniphilic disorder, where certain foods cause abnormal cells to grow in the esophagus, gastrointestinal tract, or elsewhere in the digestive system.

I'm not sure what the other possibilities are, but I know there are other things that can cause permeable or "leaky" gut--celiac disease is one we've already looked at. These things can be caused by adverse food reactions, but the gut permeability can also cause more adverse food reactions. We know she has higher than normal levels of candida and bacteria, which could also point to some underlying issue that's somehow weakening her digestive system.

The exciting thing is that if Baby E's reactions to some or all of the foods are caused by an issue with her digestive system, they may go away once the underlying issue is solved and her gut heals.

Someone from the GI specialist's office did finally get back to us yesterday. Our GI specialist, apparently, "has been very busy" for the last several weeks, which is why my phone calls were not returned until now.

An order for the "reducing substances" test was FAXed to the hospital lab, and I dropped off a lovely stool sample yesterday. So there's actually a chance the test results will get back before our GI appointment next week.

I saw my own doctor yesterday, too.

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I weighed in at a whopping 100 lbs fully-dressed. The appointment consisted mostly in a student taking a history and asking my symptoms (fatigue, dizzy spells, weight loss, low temperature, irregular cycles, digestive & swallowing issues, basically not feeling good, etc. etc.), asking me if I'd had my thyroid checked (I have), and asking why I'm there and what I think I want the doctor to do about my symptoms, since it's really nothing particularly new, only worse.

Then the doctor came in and asked me if I am anorexic or bulemic (again), to which I answered (again) that I am not, no I don't have body image issues (except that I know I'm underweight and would like to gain about 15 pounds), no I'm not purging, and yes I'm eating plenty of healthy food in normal-to-large quantities, but everything high-calorie is pretty much out because of Baby E's allergies (er, excuse me, adverse food reactions).

Basically, the verdict was "It's probably just your autoimmune stuff acting up and because of being underweight, and there's most likely nothing we can do about it. You just need to take care of yourself, eat right, get plenty of exercise, etc. etc."

They did send me for a few more tests and, depending on the results of those, my doctor said he may refer me to a rheumatologist to look further into the autoimmune angle. They drew blood to do a few more panels and are going to send me for a barium swallow.

Meanwhile, I'm supposed to be keeping track of everything I eat so the doctor can see exactly how many calories I'm taking in.

Deposits, but no return

We have apparently lost several more foods, including yogurt. That brings Baby E's total number of foods she can't tolerate to somewhere in the range of at least a dozen.

Today I made various phone calls between doing school with the girls, preparing meals and caring for a still-fussy Baby E.

I called allergist #1 to tell him about Baby E's most recent series of reactions and get his opinion. Of course he said he didn't think they were allergies.

So I guess it's official: Baby E has no food allergies.

Her consistent, reproducible, quick-onset GI symptoms, rashes, swelling, itching and general misery from specific foods are adverse reactions, not allergies. The tests say so.

Those first 8 positive skin-prick tests must have been false positives. Funny how she had "false positives" only to those foods which actually give her the not-allergic reactions.

I've called our GI specialist at the Children's Hospital at least four times over the past month or more, to ask three questions, and still haven't received a single return phone call.

The questions:

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1) Where did she send the orders for the stool test she ordered for Baby E, if indeed she sent them anywhere? Because none of the three labs we've used in the past has them.

2) Is it all right to switch Baby E to ranitidine (Zantac) instead of omeprazole (Prilosec) for her reflux, since she started getting rashes, itching, severe discomfort and diarrhea every time we gave her a dose of the omeprazole?

3) Could we please get the product code for the mask that was used for Baby E's endoscopy back in December, so the mask company can find out what was in/on it that might have caused Baby E's reaction to it.

The stool test isn't going to get done in time to get the results back before our appointment next week, we went ahead and switched Baby E's medication ourselves without the doctor's approval, and I'm not sure if we'll ever get the information about the mask, since we've been trying to get that since December with no success.

At least we already had a previous prescription from another doctor for the ranitidine--otherwise we would have had to choose whether to go for weeks with a reflux med that was causing increasingly severe reactions or no reflux med at all, which would also make Baby E miserable. Ugh.

I do really like the GI specialist, but we've consistently had a terrible time getting her to return phone calls. I've finally learned that we'll get an answer more quickly by making an appointment than by leaving a phone message. That could get real expensive real fast.

I can't help you.

I called the allergist Dr O's office today. I told the nurse about the not-so-successful trial with apples, and asked about the possibility of patch testing.

She said that Dr. O felt Baby E's reactions are not allergies, and recommended that we see a GI specialist as he didn't deal with these kinds of issues. He recommended the GI specialist we're already seeing, and the testing we've already done that came back negative. Meanwhile, she said, continue to avoid apples and the other foods that cause adverse reactions. Of course.

I asked whether patch testing might be helpful at all in identifying some of the foods that cause reactions. The nurse said that might be useful but we'd have to see a dermatologist for that, as Dr. O doesn't do it.

Finally, I asked if, when it came time to trial corn and soy, we could do an in-office food challenge. With immediate, severe symptoms including itching, rashes, GI symptoms and facial swelling to the smallest traces of refined corn and soy derivatives, I don't want to take a chance on doing those ones at home.

She said that, with the "true" serious food allergies, usually Dr. O. recommends that people do that type of testing themselves by parking in the emergency room parking lot to feed the food to their child. That way if the child goes into anaphylaxis, medical help will be right there.

Alrighty then.

Zantac-Zyrtec

I misspoke in my last post. It was Zantac, her reflux medication, that Baby E was taking when the allergy testing was done. Not Zyrtec, the allergy medation that is an antihistamine.

The only allergy medicine we have in the house that Baby E can take is the compounded Benadryl, and we avoided that for at least 5 days before the apopointment as we were instructed.

However, I just found out that Zantac is actually an antihistamine too. We did tell the allergist that she was taking Zantac twice a day when she was tested, and he didn't say anything about it being an antihistamine.

I'm going to have to call and ask about that today.

Better

Baby E is 19 months old. She's feeling much better today.

The apple trial was a bit like a flashback to September and October, when she was so utterly miserable. It's such a complete personality change. Her congestion also came back.

I suppose it's good to know that the extreme fussiness, behavior changes and congestion weren't just from the reflux and the aspiration.

I'm going through old posts again, trying to compile a list of the foods she reacts to and what symptoms we've seen with each. It was eye-opening to realize that the near-constant crying and non-sleeping was already going on by the time Baby E was a week old.

I sent a copy of my August 2005 notes to DH. He told me later, "I started reading through that stuff, but I had to stop because it was so depressing."

It is depressing to read.

I'm glad, at least, that we've made some progress in the last few months.

Now if only we can find a way to test the foods we need to test without seeing the miserable, antisocial, inconsolable and regressing Baby E arrive back again every time we test something.

I'm going to ask the allergist about the possibility of doing patch testing, and also whether Baby E's Zantac could have affected the results of her recent allergy tests.

I'm also going to ask the GI specialist about whether we should be considering the possibility of eosiniphilic disorders other than eosiniphilic esophagitis, the one they've already tested her for.

No more apples this week

Baby E is so extremely miserable tonight that we long ago passed the dividing line between normal fussiness and a major problem. DH got home and agreed that it definitely looks like a reaction. She's in a huge amount of discomfort. Benadryl did seem to help a bit.

We're going to remove apples again and try trialing them again probably next weekend to be sure whether it's the apples or something else she's reacting to. I'll see if I can get some untreated apples directly from a farmer if possible, although I'm pretty sure this applesauce was safe.

This is very much the same kind of behavior we were seeing before we cut out the foods she had positive skin tests to. Some things (corn, soy) she gets more immediate systemic responses including rashes and itching, and with others it seems to be just the more delayed GI symptoms with maybe itchy ears and a spotty diaper rash.

More questions than answers

OK, so the allergist says we're on our own figuring things out by trial and error, since he doesn't consider Baby E's previous positive skin-prick tests to be valid and his push-and-twist test and the RAST test came back negative.

He agrees that she has food reactions but he doesn't think they're likely to be allergies, although he can't say for sure one way or the other. Which is fine--I'm glad he admits it when he doesn't know something.

But if the allergist can't help us figure out what's causing her reactions or how to manage them, when they're clearly food-related and severe, then who can??

How can they be immediate food-triggered reactions with rashes, itching, facial swelling and GI symptoms, and go away with Benadryl, and NOT be allergies? If they're not allergies, what are they, and what's making them happen?

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Are they going to continue getting more severe, and happening in response to more triggers, like they've been doing? Is there a way to stop them from getting worse?

How do we go about testing the foods we think cause reactions, or caused reactions in the past, but we're not sure about now? How do we figure out how strictly to avoid the foods that cause only mild or delayed reactions?

What about medicines? How do we decide when the low-grade reaction is worth the potential benefit?

With her history of reactions that seem to get worse with continuing exposure, should we be trying to completely avoid anything that clearly causes a reaction, no matter how mild? Or does it just depend on the symptoms and severity in each case?

Are there even answers to these questions?

I just feel like we keep getting shuffled from allergist to GI specialist to pediatrician and back, and nobody seems to know what's going on with her but it's not THEIR area of specialty, so we're just on our own.

I gave Baby E more applesauce at lunchtime. She really loves it.

But then she had another not-really-normal stool within an hour or so. She was really gassy and had a lot of abdominal discomfort, too.

Now all afternoon she's been tired and fussy, clingy, needs a nap but won't nap, wants to nurse constantly but squirms, grunts and fusses while nursing. All common symptoms with her milder delayed food reactions.

I'm not sure how long I should I keep giving her the apples to be sure whether this is from the apples or something else. It's quite possible that something other than the applesauce is causing it. It could be completely unrelated to food.

I think I will probably give her apples for a few days, remove them for a week or two and see if this type of thing goes away, then add them again and see if it comes back.

What I need to figure out is how many times to trial things, and how often, before we can be sure it's a specific food causing specific symptoms.

The immediate rash/swelling/itching/severe GI symptom reactions she gets to a few foods are scarier, but at least they're easier to identify.

This kind of thing is much more murky.

I'm getting tired of having so many questions with no clear answers.

Confirmed

I'm not pregnant. :)

We started trialing apple with Baby E yesterday. It's a food we had never seen clear reactions to, and she tested only borderline positive to it, so we've been wanting to try it again. Even though the allergist didn't give me any help on exactly how to go about doing a trial, we decided to just go ahead on our own. We're using the "trial and error" method, as he recommended.

So far it seems she's not having any severe reactions or rashes. The applesauce seemed completely untouched by her digestive system, but DH unknowingly gave her another food that could have caused that kind of reaction last night, too. We'll keep trying the apples for at least a few days unless we start seeing obvious severe reactions.

School and life in general are plugging along.

Elemental Formula: now out of committee

The Elemental Formula bill passed committee at our state capitol. Unanimously.

It appears that it has a pretty good chance of being approved by the state Senate.

That's good news.

Allergy Frustration

Today Baby E and M&M saw the allergist, Dr. O.

Both had skin testing done--M&M for the top 8 plus corn and dust mites, and Baby E for a few new foods we've been suspecting, plus corn and soy (which we've been avoiding now for almost 18 months and 7 months, respectively). Neither set of tests showed any positive results.

As for M&M, he felt it likely she has reflux, especially considering that she had it as a baby.

He described the typical kid with reflux: "A kid with reflux might be small for her age, often doesn't gain much weight or grow very fast, doesn't want to eat, or is hungry often but then eats two bites and says she's full, might complain of tummyaches, could have throat and mouth pain, may snore or cough at night, and sometimes they can even have bad teeth from the stomach acid coming back up."

Sure enough, that sounds a lot like M&M.

Dr. O says that reflux is often hereditary and tends to be lifelong. He's going to write a note to our pediatrician to suggest that he look into the possibility

Dr. O is nice and seems down-to-earth. He wears things like faded jeans and a plaid shirt to work, which cracks me up. He believes me about E's reactions and doesn't act like he knows everything, He doesn't pretend that statistics are the end-all-be-all of diagnosis. He says that there is much we don't know about allergies and the immune system, and that symptoms trump testing.

But he also says he can't really do anything for us. Since the RAST test and his skin-prick tests were negative (even though previous skin tests were positive), we're just on our own trying to diagnose problems through trial and error.

He has an unusual method of doing skin-prick tests.

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Dr. O said he had never seen a reaction of 0 to even the negative control on a skin test, and that the normal response to the negative saline control should be a wheal of about 5mm, with a wheal of at least 3mm larger (8 or bigger) for a positive result.

I expressed surprise, saying that the other allergists we'd seen and everything I'd read said the reaction was supposed to be 0 for the negative control.

He said something like, "Supposedly. Everything you'll read says the negative control should be 0, but that's not really how it works. That's what other allergists will say, but I've been doing this for 20 years and that's not the way I learned it."

I figured out why when the nurse did the testing. She took each allergen extract on a multi-toothed plastic applicator and then pushed it in and twisted the points, rotating the applicator while pushing it down on the kids' backs to actually scratch their skin, instead of just pricking it.

"You have to get enough of the allergen in there to cause a reaction," Dr. O said. "Otherwise it won't be as accurate--you don't get a big enough wheal."

Of course you're going to get a larger wheal when scratching the skin and causing abrasions than when just pricking it to introduce the allergen. From everything I've read, the skin scratch method is considered less accurate and harder to interpret (and more prone to false positives) than the basic prick method the other two allergists used.

Dr. O thought Baby E's previous skin tests were invalid or negative because she had no wheal and no flare to the negative saline control (she did have wheal and flare to the positive histamine flare and to several allergens), and none of her positives were greater than 7mm even to the histamine control.

He said it was statistically 95% certain that Baby E did not have true IgE regulated allergies, but that she obviously did have problems with certain foods, although he didn't know exactly what or why. He said we should continue avoiding any foods that cause adverse reactions, of course.

He did say that he would recommend that we continue to avoid peanuts, tree nuts, fish and shellfish for E until she is at least 3, but that we probably don't need to worry about milk, eggs and wheat.

I told him that I was concerned about the fact that Baby E's reactions seemed to be escalating, and becoming more severe to smaller traces of allergens--particularly corn. It started out with just GI issues. Now we're seeing more itching, rashes and facial swelling in addition to the GI symptoms.

He said that generally allergic reactions don't get worse over time; they stay pretty much the same. Although they can occasionally escalate, that's rare. He said that since E doesn't have asthma we probably don't need to worry about the reactions being dangerous. It's the kids with asthma, he said, that end up having life-threatening anaphylaxis.

I asked what the likelihood was of E's facial swelling progressing into airway swelling and potentially becoming dangerous. He said, "None. Or as close to zero as it can get without being 100%, because nothing is 100%. You have the epi-pens around, so that's good. But unless she starts getting asthma you really don't need to worry about it."

He didn't really tell me anything I hadn't heard before, and didn't seem to think there was anything else he could do for us. I guess the common opinion among allergy communities that allergists aren't helpful for much besides doing testing and prescribing medications is pretty accurate. We're on our own trying to figure out how to test and live with Baby E's adverse food reactions.

Since the method of skin-prick testing used by the two allergists closer to home seems more accurate for us (at least Baby E tested positive to the foods we know she reacts to), we'll probably just go back to one of them if we feel a need for more testing in the future. It's not really worth driving all that distance just for testing that I don't trust as much. I do trust either of the other allergists closer to home to do testing.

Dr. O did give me a "to whom it may concern" letter to carry stating that Baby E has adverse food reactions and should be allowed to carry in her own food, in case we ever run into a problem with a restaurant not letting us bring in outside food. I wish he would have made it less specific to restaurants, but hopefully other establishments like sports arenas will honor it also.

He said that with true IgE allergies, typically it's very rare for a person to have allergies to more than one food family, and that typically allergies don't escalate with subsequent exposures the way Baby E's reactions have so far, so that's a point against allergies as a cause. That seemed strange to me, because the food allergy online communities are full of people with multiple allergies that seem to change in severity.

He also said that kids with eczema do often just get rashes that come and go, usually with no explanation. He seemed to feel that some of Baby E's rashes were likely just random or caused by something topical, and not necessarily from food.

He did agree that the fact we could get a consistent, reproducible, quick-onset reaction by feeding E specific foods was pretty clear that she was having food reactions, though, and that this would normally point toward allergy. He also said that the fact it goes away with Benadryl is another indication pointing toward allergy.

Other than that, he pretty much said that he didn't have a clue what was going on with Baby E, except that it was obvious she was having SOME kind of adverse food reactions, whether a true IgE allergy or not, and that we'd just have to figure it out ourselves with trial and error.

I'm not sure exactly what I was hoping for, but that wasn't it.

I doubt we'll be going back to any allergist again unless we have specific things we want to have tested and it's not something the regular pediatrician can order.

You know, I really don't care that much whether Baby E's reactions are officially Ige-regulated allergies or not. But I sure would like to see her get better. I'd really love to have a cure for whatever it is, but failing that I'd ideally like to have a doctor of some sort or another who could actually help us figure out how to best manage it.

At least avoiding the foods seems to be doing the trick. If only avoiding them (especially corn) wasn't quite so hard.

Just call me foolish

I sampled a bit of the whipped cream frosting I made for AJ's parsnip cake last night. When that started making me feel bad a few minutes later, I ate a little plain yogurt. I can usually tolerate small amounts of yogurt so I thought the cultures in it might help my body break down the cream.

What was I thinking?

I spent the night being horribly ill.

Since my symptoms with cream and yogurt are usually just generalized itching a few days later, and maybe a stomachache and lactose-intolerance-like symptoms, this caught me by surprise. I had eaten yogurt with no ill effects at all earlier in the week. I still haven't been sure whether I have an actual milk allergy or just lactose intolerance. Both cream and yogurt are low in lactose.

I can tell you this, though--I hugely regretted my decision to try the cream and yogurt this time. Hopefully this will squelch my cravings for dairy products for good.

I don't know for sure what's going on. I think my stomach is still sensitive after having that intestinal virus on Valentine's Day.

Still, 2 weeks of nausea does make a person wonder . . . especially in combination with this.

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The pregnancy test I took yesterday evening was negative.

I would have been happy either way, although we've been very careful to try to avoid pregnancy because of health reasons (my doctors were already suggesting weaning, and have told me it's important to avoid pregnancy for my own health right now).

If I was pregnant right now I would be really worried about the health of the baby, not to mention the decisions I'd have to make about weaning Baby E. There just aren't any vitamin supplements I've been able to find that I can take while nursing. But there are no formulas on the market she can have (expect possibly the one elemental formula that's HUGELY expensive and tastes terrible), and her doctor wants her to stay on either breastmilk or formula because she needs the nutrition.

My being underweight and on such a limited diet without being able to take prenatal vitamins would certainly not be optimal for a healthy pregnancy.

Still, part of me was a little sad when I saw the negative result on the test.

If ovulation took place around day 37, as looks possible from the chart (though very unusual for me--normally it's around day 14-16), AF should be arriving in about a week.

This morning I have mild generalized itching and I still feel pretty sick and have intestinal symptoms (though thankfully no more vomiting).

I thought about trying to take Baby E's Benadryl again (I tried to take some last night and couldn't keep it down). But it makes me so tired, and we're going to have about 15 kids here for a birthday party in 3 hours.

Bless DH, he is so sweet. By the time it became obvious I was in no shape to make the birthday cake last night, he said he would do it. The poor guy stayed up until 3:30 AM working on getting ready for the party while I was glued to the bathroom.

The cake smelled delicious with my water-extract vanilla in it. I just ground up the outer shell of a vanilla bean in the coffee grinder and simmered it in water for a few hours, then refrigerated the mixture. DH strained it and used the liquid in the amount called for in the recipe. It smelled very vanilla-y and DH said the bit stuck to the pan tasted great and that the cake turned out well. I'll make some frosting (with some of the vanilla seeds mixed in) and decorate the cake today.

We did end up giving up on making a cake Baby E and I could eat for the party. It's free of her actual allergens (as long as the King Arthur all-purpose flour is truly corn-free), but it has butter and eggs in it. We're just avoiding dairy products and eggs for the time being because they tend to be allergenic, not because she's actually allergic to them.

A crumb of the vanilla cake won't make Baby E sick if she happens to get one, and she can eat the leftover parsnip cake from last night. I'll make a gluten-free, corn-free, soy-free, egg-free, dairy-free cake for the family gathering tomorrow.

For myself, I don't think I'll be wanting any cake for a while.

Elemental Formula

The girls and I drove about 2 hours each way to the state capitol today. We went to show support for a bill that had public hearings today. If passed, the bill would require health insurance companies to cover elemental formula when medically necessary.

Every one of the feeding formulas on the market (including the "hypoallergenic" formulas) contains corn, soy or both. A child highly allergic to soy and corn, or either of those plus milk, has no options other than elemental formula if supplementation is necessary or if they for some reason can't breastfeed.

In some cases the child can't tolerate an element in breastmilk itself (something that can't be fixed by changes in the mother's diet). Without elemental formula, these children with multiple severe allergies would languish or even die.

The ultra-hypoallergenic elemental formula with no intact proteins is used for babies with severe allergies who can neither breastfeed nor tolerate other formulas, older kids in the same position who need some extra nutrition, and kids with eosiniphilic esophagitis.

However, the cost of elemental formula is astronomical. One family on a food allergy support group I take part in shared that her daughter's elemental formula costs about $800 per month. Obviously, many families simply cannot afford such a cost.

In many cases, paying for the elemental formula would be less expensive than paying the extra medical costs incurred by parents who, out of desperation, must continue feeding formula that causes health problems for their children. Yet health insurance plans in our state refuse to cover it--unless it's fed through a tube.

The formula is covered if fed through a tube, but not if fed by mouth. Medicaid covers it both ways, but not private health insurers.

I really hope the bill passes. So I wrote e-mails to all the senators and went to the hearing.

Unfortunately, between traffic and the weather on top of underestimating the drive time (thanks, mapquest), we got there just after the hearing ended.

At least we got to briefly meet some of the other kids and parents before they dispersed. And we got to see the capitol, which my girls found very exciting.

Our new best friend

While I slept away most of the afternoon, still recovering from the intestinal virus, DH took the kids shopping.

When they got home he said, "I bought strawberries, washed them and gave some to Baby E. She can have strawberries, right?"

"Oh, no," I groaned. "She's not allergic to strawberries, but they're some of the worst offenders when it comes to being treated with corn derivatives. They're almost always treated with citric acid. They're so porous you can't wash it off--it soaks in too deeply. And you can't peel them."

"Oh, rats. I'm sorry. I thought she could have strawberries."

"She can, in moderation--if we get them straight from the field and they haven't been treated with anything."

"Oh, no. I feel so bad."

"I've accidentally corned her plenty of times myself. We'll just have to keep a close eye on her."

"Look at her now. There go her cheeks getting red."

Sure enough, before long E had a bright red spotty rash on her cheeks. Then her face started swelling. She was fidgeting and crying, rubbing at her eyes as the skin around them puffed up and scratching at her reddened ears.

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So we gave her a dose of the diphenhydramine (compounded Benadryl).

Within 5 or 10 minutes the rash and swelling were gone. Her cheeks were suddenly clear. Her face looked better than it had in weeks.

She was still fussy and uncomfortable, but not nearly to the extreme she had been. The medicine definitely cut short and minimized the allergic reaction. She didn't even seem to have any significant side effects.

With the facial swelling and as miserable as she was, this was shaping up to be one of the worst allergic reactions she'd had recently. Even if it hadn't become dangerous, the misery and discomfort would have probably lasted all night--possibly longer. Even when her only symptom is a slight rash on her cheeks it normally takes hours to fade.

Antihistamine medicine is a most excellent discovery. I'm so thrilled to have it. I feel like writing effusive thank-you-notes to the person who isolated the drug, the manufacturer, the doctor who prescribed it, and the compounding pharmacist.

Knowing that the antihistamine works so well for Baby E gives me so much more peace of mind about the inevitable accidental exposures to her allergens.

As DH and I were saying to each other, "Wow! That was amazing. It looks like Benadryl is our new best friend. We're not going anywhere without this stuff."

The latest summary on Baby E.

Thanks to David for highlighting my blog. Since he linked to the 15-month-summary I wrote back in November, I wanted to post an update to link from that post.

When SIL, BIL and their family were here recently, SIL commented how different Baby E's entire demeanor is now than it was in December. She's so much happier, more social and interactive, energetic, and sunnier in demeanor than she was a few months ago.

Even though she still has a lot of reactions and symptoms--some of which we're unable to pinpoint the causes of--she's still doing so much better.

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In October and November she was screaming inconsolably at least 30 to 50% of the time. She was fussy, lethargic, grumpy and uncomfortable most of the rest of the time. Her truly good days were far and few between, and what would have been a relatively good day then would be a "not feeling well" day now.

The reflux medicine has made a huge difference for her. Even just having her off it for a few days when she started reacting to it, I've been seeing more of the short-fused, fussy, grumpy and uncomfortable baby again. I really don't want her to go back to that as the norm. Hopefully she will be okay with this new batch of medicine, or we will be able to control her discomfort with Zant@c instead.

Thickening Baby E's beverages has made a big difference too. She doesn't choke so often, and she no longer sounds congested all the time.

The other thing that I think has made a big difference has been raising our level of caution about incidental exposure to E's allergens. Everything--food, toothpaste, laundry detergent, craft supplies, toys, etc.--comes under scrutiny.

If it has even traces of E's allergens in it, it either doesn't come into the house or it gets treated like a toxic, dangerous substance that can't come near anything Baby E might touch. If we have people over, we provide the snacks or check labels as it comes in the door. Anything (especially anything crumbly or drippy) with corn, soy or coconut in it goes immediately back out to the person's car, unopened.

We've discovered the hard way that we can't just stick to a very limited diet with Baby E. If she eats any one thing too often, she's likely to develop an allergy to it. So we have to rotate foods and try different things more often than we might otherwise choose.

Anything that seems at all doubtful is being added carefully, one thing at a time and ideally not more than one item per week. But even with that precaution we get frequent mild reactions.

Sometimes it's something that has been safe dozens of times before, and this time we happened to get a batch with some kind of cross-contamination or an undeclared ingredient change.

Maybe this batch of organic carrots was washed in citric acid or came in contact with something that had been treated with soy- or corn-derived wax. Maybe the meat processor decided to start washing their machinery with a disinfectant made from one of E's allergens. Maybe that pear or tomato was ripened using corn-derived ethelyne gas.

We suspect that Baby E has one or more allergies that we have not yet identified--it could be a food, something environmental, or who knows what. Since she's had positive skin tests to at least 8 different things, but negative IgE blood tests to everything, it will be interesting to see what the allergist says as we further explore her reactions.

Since her severe face rash and swelling during the endoscopy in December, she now gets rashes on her face very easily. That has become a good indicator of her mild allergic reactions.

Most of the time now, Baby E sleeps through the night. She has a lot of mild to moderate reactions (including rashes, itching, occasional swelling, congestion and gastrointestinal symptoms), but hasn't had a really severe reaction for weeks.

She doesn't feel well sometimes--still too much of the time, we think. But generally she is happy, bright, energetic, interactive and loves life.

We don't have all the answers yet. There may still be other things unrelated to allergies (besides the reflux, aspiration, and anemia) that we haven't yet figured out.

The GI specialist wants to do another stool test to check for sucrose intolerance, but I'm guessing that will come back negative.

She isn't consistently getting any of the symptoms we were seeing from just eating normal amounts of unrefined sugars. The sweet-smelling malabsorptive-type stools seem to be connected to her low-grade allergic reactions, and to consuming certain foods (particularly plums, I think--which were probably coated with corn-derived wax that wasn't completely eliminated with washing and peeling). That's encouraging to me.

I've had to come to terms all over again recently with the fact that we probably will never get to a point where things become static and we can completely or almost completely keep E from having reactions. But I think I'm okay with that now.

I'm just glad she's so much better than she was.

It's interesting to look at the symptoms Baby E had when being regularly exposed to high amounts of allergens and dealing with a lot of discomfort from the reflux, etc.

She was losing skills, regressing in speech, becoming antisocial, screaming and flailing for hours at a time, sometimes sitting staring into space or barely responsive, being extremely picky about foods and textures, failing to gain weight, getting wildly upset by the slightest things, and sometimes engaging in repetitive behavior such as banging her head with her fist.

She still does those things if she gets a moderate to severe allergic reaction or is in a lot of discomfort. Otherwise she's perfectly social, interactive, bright, intelligent and very normal.

I have to wonder, though: If we hadn't been able to figure out that allergies and reflux were issues for her, what would have happened if we'd kept feeding her the problem foods and left the reflux untreated? Would she have descended gradually further into the withdrawn, abnormal behavior?

Even if we'd eventually figured out her issues, might some of the damage eventually have become irreversible? Would she have dropped so far in her development that she would have been unable to catch up? Or could the patterns of behavior have become so deeply ingrained that they became normal for her?

If we had been unable to figure out what was causing Baby E's discomfort and other symptoms, would she have been diagnosed with failure to thrive, autism, asperger's, sensory integration disorder, oppositional defiance or some other similar condition? Doctors were already starting to mention things like SID.

When a young child is experiencing intense uncomfortable sensations, it will show in their behavior--perhaps in unexpected ways. It's hard enough for an adult to function and control their behavior when in pain, itching, experiencing migraines, having allergic reactions, etc. What must it be like for a young child who doesn't understand what's going on, or perhaps has never experienced anything different?

I thank God constantly that we've been able to find so many causes and solutions to help Baby E.

The last week or so, I've been feeling that it's easier to divide my focus and energy between the various household and family needs. Baby E is still essentially a special-needs child, and her care, diet, etc. will probably always require extra energy. But most of the time, at least at home, I think we're able to give her a pretty normal life.

And I'm slowly learning how to meet her needs without making her too much the focus of the household. I'm finding ways to make time to homeschool AJ and M&M and focus on them, while still taking care of household tasks, cooking hypoallergenic meals, etc.

I still have a long way to go, but I think we're on the right track toward learning how to balance our life and family.

Unfortunately, at this point it involves getting very little sleep. :) Hopefully as I improve in my time management and balancing skills, that will improve.

I fluctuate between feeling discouraged and overwhelmed, and feeling hopeful and positive. But through it all God sustains me and gives me strength.

Today I'm feeling encouraged.

Just a normal day of research and reactions

Last night I bought some Florida's Natural grapefruit juice with calcium.

Since Baby E does well with the unenriched orange juice and the OJ with calcium is on the corn-free list, it seemed pretty safe. We've been drinking Florida Naturals orange juice for a long time with no adverse effects. Finding a safe source of calcium has been getting more urgent, since we aren't eating dairy products and I'm having more and more issues with my teeth.

I drank a glass of the juice before bed. It was good.

When Baby E nursed this morning, she got a spotty rash on her face. Then she had mild diarrhea. I was itchy and having the same kind of intestinal symptoms by then, too (hmmm--interesting!).

When I called the company, after quite a lot of runaround and being initially told it was corn-free, I finally got a straight answer.

The calcium citrate is a byproduct of citric acid production, made by a fermentation process. It may be grown on corn, they said, but it certainly wouldn't contain any corn protein and couldn't cause an allergic reaction.

Of course we know otherwise. It could be from the mold used in the process, from the corn, or both, but Baby E definitely reacts to citric acid derived that way.

The rash faded after an hour or two. When it was mostly gone I gave Baby E a dose of reflux medicine from the new bottle of Omeprazole.

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She's so uncomfortable without the reflux medicine that I felt it was important to, if at all possible, get her back on it as soon as possible. If I wait until she's not having any reactions to try it again, it could be days or weeks of unecessary discomfort for her.

2 hours after giving her the omeprazole, I still wasn't seeing a clear reaction. That was encouraging, since she had reacted within an hour or 90 minutes before.

After 3 hours her cheeks were moderately red and she was getting a bit fussy and gassy, and saying "ow" occasionally. But it was well within the range of normal, and nothing that couldn't be from some other cause (running around roughhousing with her sisters, being overdue for a nap, etc.)

Of course, her earlier reaction today could complicate things or make it harder to discern a reaction from the medicine. Now that I'm nursing her again before her nap, I won't be able to tell which trigger causes any new symptoms.

If she did have a reaction to the medicine at all, it was much milder than the reactions she was having before. But I don't think she actually reacted to it. Of course, I'll be watching her carefully after each dose for the next few days.

It does seem likely that she may not actually be allergic to the omeprazole and that the last batch just somehow got contaminated with traces of her allergens. The fact that she was taking it for months with no ill effects and then started having problems with the recent refill would seem to point that direction. I really hope that turns out to be the case.

Before I went to bed last night, I set up a suprise for AJ and M&M. I made breakfast plates for them with banana bread, rice cakes with sunflower butter, and sliced kiwi fruit. Those went into the refrigerator on a low shelf. I set out art supplies and paper. Then I wrote a note telling them that breakfast was in the refrigerator, and that when they had finished their chores they could make Valentines.

They were so excited to get a letter. They loved having breakfast artfully arranged and ready for them to eat, and couldn't wait to do the craft. I've rarely seen them do their chores so quickly and cheerfully.

While the girls were doing art projects I let Baby E draw with colored pencils. I'd heard on the avoiding corn forum that Crayola colored pencils were corn-free, so they seemed the safest option for her to use. I've let her use them several times under close supervision, and she seemed to be okay with them.

All three girls had a great time coloring.

Then I noticed that Baby E had red raised welts wherever the tips of the colored pencils had bumped her skin. They seemed awfully big, raised and red for just pressure marks, so I called the company.

It turned out that the colored pencils do not contain corn, but they do contain soy.

There's no coconut/palm oil in anything other than the oil pastels.

The crayons contain cornstarch in the glue that fastens the paper wrappers. The crayons themselves do not contain corn, soy or coconut/palm oil. They are made in a paraffin base, not vegetable or beeswax.

I am going to try taking off the wrappers and washing the crayons, and then letting Baby E use them. I'm excited that the crayons will probably be safe once washed. She greatly prefers crayons to colored pencils, and she's always begging to use the girls' crayons.

The welts faded pretty quickly, so I'm not absolutely sure they were really from the soy in the pencils. Then again, her rashes are often short-lived even when they are definitely and reproduceably a reaction. She does still have a few red marks where the welts were, hours later.

Anyway, it's nice to know which Crayola products do and don't contain her allergens.

I took some pictures of the welts. I kept telling her to "look!" and pointing different directions to get her to move her head so I could get a good shot.

She figured out pretty quickly what I was doing. She thought it was pretty silly that I was telling her to look at the ceiling or across the room when there was nothing there.

A little while later, I was trying to get her to at least taste a bite of her lunch. As I was holding a piece of meat and trying to get her to open her mouth, Baby E suddenly got a glint in her eye.

She pointed to the window. "Ook!"

As I turned to see what she was pointing at, she snapped her mouth shut, turned her head and batted the piece of meat away. Then she laughed.

This kid picks up on everything.

Monday Moments

• DH is feeling better and went to work today. The worst of it lasted only one night, and nobody else seems to be coming down with it so far.


• Baby E went to sleep without a 3-hour struggle for the first time in several days for her nap today. She's sleeping now. She has been increasingly fussy and short-fused lately.
  
  I can tell the reflux is bothering her a lot more now that she's been off the medicine for a few days. Sometimes I can hear her reflux, and then she'll start crying sharply. She woke up screaming this morning. She cries and says "ow" when I lay her down for diaper changes, etc. She's crying and saying "ow" a lot in general.
  
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  Our compounding pharmacist made up a few doses of omeprazole for her in a new batch, just so we can be sure it's actually the medicine and not some cross-contaminant that she's reacting to. If that doesn't work, I'll have to call the GI specialist to see if she can prescribe Zantac for us to try instead.
  
  I think those two are the only options for reflux medications that can be compounded free of Baby E's allergens, so I really hope one of them works. I'd hate to have to decide whether the pain and damage from the reflux or the mild allergic reactions are the lesser of two evils for Baby E.



• Speaking of compounding pharmacies, I spoke with the pharmacy that handled the Nystatin fiasco again today.
  
  They said that the reason they didn't disclose the glycerine and xanthan gum in the suspension was because they thought both the doctor and I were specifically asking whether there was glycerine or any other ingredients in the stevia itself, not in the entire medicine. So they didn't feel a need to disclose the other ingredients--even when I was calling trying to figure out why Baby E was reacting to it.
  
  That seems patently ridiculous to me. I did ask a lot of questions specifically about the stevia, but that was because they'd already told me there was nothing but water and stevia added to the nystatin powder. The pharmacist apologized and said it was a miscommunication. Ugh.
  
  At least she finally offered to refund my money.


• I e-mailed the company that makes the oxygen masks used by the children's hospital again. I hadn't heard anything more about what Baby E might have reacted to in the mask, so I wrote a follow-up e-mail.
  
  The medical supply company rep e-mailed back to say that she hasn't been able to get either the doctor or the hospital to return any of her phone calls. I'll have to call today and see if I can get them to give either the rep or me the product code so that the company can research it.


• It's amazing how much work, persistence and pushing it consistently takes just to get such simple pieces of information. Sometimes it seems the whole world is trying their best to make it difficult to deal with Baby E's allergies.


• After Baby E went down for a nap, I taught AJ and M&M their Bible lesson for the day. The lesson was about Adam and Eve, and the serpent in the garden.
  
  I had fun making my arm and hand into a snake and acting out the story with all the different voices. Two sets of eyes glowing, and the interest with which the girls discussed the story, made it the highlight of the day so far.

Ding-Dong, The Itch is Gone

DH is feeling slightly better today after a very miserable night.

Baby E is uncomfortable and fussy, and took 3 hours to go down for her nap again. Either the sugar or being off her reflux meds (or both), or something certainly seems to be bothering her.

We'll be able to pick up a fresh batch of the omeprazole on Monday. The pharmacist made up just a few doses so we can try that and see if we get the same reaction she was having to the medication we have here.

AJ and M&M are tired and grumpy, too. They've had a lot of activity and too many late nights lately. I think early baths, a nice long bedtime story, and an early bedtime are in order for them tonight.

Last night I was feeling like I might come down with what DH has, so I ended up staying up until almost 3 AM. I was trying to do the things that were most important to have done in case both DH and I ended up mostly incapacitated for a few days. At least I got the kitchen cleaned up, washed dishes, did laundry and got some small bits of meal preparation done ahead for the next few days.

I'm not feeling too badly at this point, but I hope Baby E will let me go to bed at a reasonable time tonight.

At least I'm not miserably itchy.

For years I thought that having generalized itchiness and dry skin was just normal for me, especially in winter. But after I cut out coconut and its derivatives, even in soaps, the itching went away (as long as I continued to avoid dairy products). It was great to not be so itchy for once!

Then, 2 or 3 weeks ago, I started itching again. Having it come back was frustrating. Once I knew I could stop itching, it was less tolerable than when I thought it was inevitable.

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At first I thought it was from trying some dairy products that week (which could have been the cause at first). But it lasted so much longer than it should have after I stopped eating dairy again. I couldn't figure out why it wasn't getting better.

Finally I figured out what changed around the time I started itching. I had used white distilled vinegar (the normal kind made from corn) in the few loads of mine and DH's laundry.

I've been making my own laundry soap out of olive oil bar soap, borax and washing soda. Since many recommend using vinegar in the rinse I had been doing that. But the rice vinegar or white wine vinegar is so very expensive.

So we decided that since DH and I aren't allergic to corn, and it's just topical, it would be reasonable to try using the cheaper corn vinegar on our clothes. Besides, it all gets rinsed out anyway, right? We'd save the expensive vinegar for Baby E's laundry.

Friday night it dawned on me that the vinegar in the wash was the only thing that had changed around the time I started itching again. I decided to try washing my clothes without it just to see if it made a difference. I washed two loads of laundry sans vinegar yesterday, with extra rinses just for good measure.

Less than 24 hours after switching to the freshly-washed clothes, the itching is already significantly better. I slept better, too.

I'm not supposed to be allergic to corn, but I do wonder. Looking back before I cut corn out for Baby E's sake, there are things that seem relevant in hindsight. For instance, I was wondering if hummus didn't agree with me, because every time I ate my favorite snack of corn chips, hummus and mango salsa I started feeling awful afterwards. I felt generally better after cutting out corn, too.

Both E and I got horribly sick when we took a trip to Mexico a year ago--when we were eating lots of corn almost daily. One of our worst spells was after having tamales for dinner--and nobody else "caught" that particular illness.

Corn was one of my "elevated negatives" (4/5 wheal/flare) on the skin prick allergy test. Of course, that was a negative according to my allergist, since I had a 3/9 to the negative control.

It will be interesting to see what happens when I wean Baby E and can try eating corn again after being off it for so long.