Chronic Urticaria and Low Histamine

I have played with a low histamine diet for James, as it is a fairly common on-line (read: not doctor) recommendation for those with chronic urticaria. And then, last week there was this article:

"A Popular myth – low-histamine diet improves chronic spontaneous urticaria – fact or fiction?"

The points I felt most significant were:

1) they were on the diet for 3 weeks (which truly, is a very short time)
2) 75% of the participants had some improvement
3) 61% reached the endpoint goal of the study

The specific diet they used in the study is not mentioned in the abstract. I would love to see it. Part of my halfheartedness in using a low histamine diet exclusively is that there is so much on-line information, and a lot of it does not agree.

The other issue I have had in completely embracing low histamine is the mental effects. For an already food restricted teen, having to lose more food for a more nebulous health reason (that is, more nebulous than a clear food allergy) is distressing.

Here is how I have handled it:

1) No leftovers. I am trying to adhere to this as strictly as I can. I was a huge leftovers fan. With only three of us, it was easy to cook a meal and then use whatever was leftover in a meal later in the week. James had what we think was a histamine type reaction (leftover tuna, spinach, and blue cheese in a salad) and Dr. Li specifically advised against leftovers (and limiting blue cheese, which we have been fairly successful with).

2) Emphasizing the foods he can eat, trying to add in more of those foods which are low histamine rather than eliminating all the high histamine ones. My thought with this is that if he is full of low histamine foods, he will be not eat as many high histamine ones.

I have been using this list because I like how it is organized. Dr. Bowdish kindly replied on twitter with this option 

.@hollysjoy I've used a variation of this list from Allergy & Immunology Associates of Michigan https://t.co/eUufyigd6x

— Matthew Bowdish MD (@MatthewBowdish) September 17, 2016

It's one I also like because of it's clarity and limited nature (ie. not every food you eat is listed as high histamine).

These two reasonable steps are working for us. If this article had been posted when James had active and severe chronic urticaria, I would have done a stricter version, at least for three weeks to see any results.

At this point in James's life, I try to make any dietary changes or limitations part of teaching him how to eat as an adult, not that far away. In some ways, his diagnosis was the best thing that happened to him, because he had no idea one could eat without, in particular digestive, pain.  He is learning to listen to his body and eat accordingly. And this will serve him much longer in life than if I forced a certain diet.

Back to Camp

I had really hoped to skip camp this year. I had every reason to believe that not only would it not be necessary, but we could even stretch our visits out to a year, avoiding the expensive summer season.

Life laughs.

In addition to his atopies, James has Tourette Syndrome. It was, comparatively,  minor by the time we saw Dr. Li and had been for some months.

Since James has been reducing his medications (both Allegra and melatonin), his tics have increased exponentially. At 10 years old, his tics were bad enough that he asked to be medicated. He tried but the side effects to the medication were intolerable. His tics have increased to that point, perhaps beyond.

Dr. Li asked about increasing both Allegra and melatonin. I explained my hesitation at increasing either, but particularly Allegra. We will not e able to do any food challenges if we can't remove him from Allegra. She concurred and we met in the middle. His Allegra will remain the same, his melatonin will be increased. She is making a custom herbal formula for him. Hopefully, he will see some improvement. She asked him to try acupuncture locally, which I am in the process of arranging.

And, we are going back to camp.

Last year, I was in the position of advocated for camp and Darren and James were more reluctant. This year, they are the enthusiastic ones and I am ... worn. Darren and I spent a day re-arranging travel plans. We have a family trip scheduled, also Back East, for the week following camp. Planes needed to be changed, hotels booked, logistics figured out. But, it is done.

What I'm doing differently this year:

1. A full kitchen, not a microwave, mini-fridge, cook in the bathroom combo. I couldn't face that again this year.

2. Gulp. A red eye flight. We couldn't find anything else (using airline points). Anyone want to wager that this will be my 'never again' point next year?

3. Not make any plans of tourist things to do. What we see is fine, but, I found last year, James needs rest after acupuncture. Often, by the time he had the energy to go out and see, it was night. Not that there isn't a lot to see at night!

Baby Steps

"You have done wonderful work."

Typical of Dr. Li, ever modest, this was her response to James's blood test results.

As I suspected, not much has changed in every day life. James needs to be off of his Allegra to move forward, so that is the next step. Since he has a history of chronic hives and has been using a daily antihistamine for a decade, this will be a long process.

Dr. Li is also going to send herbs to help with viruses, hopefully eliminating any viral hives. When he is no longer taking Allegra, he will be able to start with his local allergist, to do skin testing, and hopefully food challenges.

While this definitely is not an exciting update, it is the behind the scenes of what happens next (for us). While we would love blood testing to be accurate enough to get results and start eating the food, that is not reality. It tests my patience, but not my thankfulness.

Results

But not what you think ...

October 23rd, James had a cyst removed from his forehead. I went in thinking it was no big deal, right up until the dermatologist said, "You'll have the biopsy results in two weeks," - not the words you want to hear.

I kept this mostly under my hat, but Wednesday, the dermatologist called with the results - benign. Everything else I'm sharing had paled in comparison to having that behind us.

Hives

They're back. The disappointment is huge. We are not talking about a serious case - a few on his lower leg that resolved on their own. But, the implications are vast. I never did get to try to reduce his Allegra - that would have been this Saturday. No food challenges will be possible until he has no hives without Allegra. I'm grateful we will be returning to see Dr. Li in December.

Blood test

It's drawn, this Monday. I am hoping to be able to report some good progress, whether or not we are able to challenge. Hopefully, next Monday we will have results. I had a hard time deciding what to test for this round. James has some allergens tested that are possibly false positives and I questioned whether or not to include them. 

As it turned out, I had an (insurance) limit of 25 allergens. It sounds like (is) a lot, but included environmental. He has nine environmentals tested, peanut, wheat, soy, lentils (that's 13). Running a tree nut panel (minus Brazil nut because that would be one too many) fills up the 25 limit. I excluded melon and mango (OAS related) and pea and white bean. James's allergist feels the legumes are likely false positives. I included lentil as a representative of the class as it is the one he has had GI problems with the longest (his whole life).

Hopefully, early next week I will be able to come back with positive results!

Making Progress

The Good News

James is still free of hives. If he continues hive-free this month, Dr. Li will have us begin to lessen his antihistamine dosage.

We have now "graduated" to every other month phone consults. My excitement is not at less contact with Dr. Li, but at the knowledge that she feels James has made enough progress to need less contact.

Dr. Li has switched from Mei Huang 4 to Mei Huang 5. James has used varying doses of Mei Huang 4 (and 3). At his highest dose, he was taking 20 pills two times a day. With Mei Huang 5, his ultimate dose will be only five pills two times a day. Currently, he is taking three because he felt nauseous with the higher dose. This has happened with his pills before and as he becomes accustomed, he is able to take more. So, while the dosage will increase slightly, few pills has meant a lower cost. We have gone from $1200 a month to $900 a month.

The Bad News

James had a minor reaction this week. I am not sure to what. He complained of throat itchiness and knew it was a reaction. It resolved with Benadryl.

All he had had was chicken and OJ. At first I thought perhaps his OAS now included oranges (although juices usually are pasteurized).  The pollen family his other OAS foods fall under is grass and orange is commonly listed in the cross reactivity lists. However, he has since had the same juice with no problems.

So, I turn to the chicken, which was a Costco rotisserie chicken. We picked it up on the way home from a museum and not from our normal Costco. It leads me to wonder if this Costco was not careful in preparing it, leading to cross contact with nuts from their bakery department. If this is the case, it was a very minor reaction and shows a lot of improvement from his previous cross contact reactions. And I will be more careful in the future questioning the stores before buying a rotisserie chicken.

Where's the Easy Button?

Recently, I wrote how James had an accidental ingestion of soy. James's local allergist, Dr. L, had suggested both a soy and a wheat challenge last year, just prior to our first visit to Dr. Li. She requested we wait. At this seemingly successful tolerance, Dr. Li agreed that he could proceed with the soy challenge.

Not so fast, mom!

Dr. L, rightly, had lots of questions regarding James's ingestion. And two were particularly relevant to whether the challenge should go ahead or not in this case.

1. Any delayed reactions? Although I hadn't considered it at the time, James did complain the next day of shortness of breath, similar to (in his words) "when he has an OAS reaction." Since we were walking and in NYC, I chalked it up to humidity and pollen. 

Dr. L also did not seem concerned with this, but it did put the thought in the back of my mind.

2. What form of soy did he ingest? As it was soy flour, it turns out that this is not the most allergenic form of soy. Much like baked egg or milk, soy proteins change in a baked form from that of raw soy, as one would find in soy milk or tofu, which is used for a challenge.

So, while it was a good sign he had not reacted to the flour, it was not a clear ingestion either.

But wait! there's more (stumbling blocks)

Dr. L requested that James be weaned off his Allegra - and stay hive free - before undertaking any blood work even to see if he would be ready for a challenge (see information on OFC and CU here). Dr. Li, the day before, had specifically told me not to adjust James's Allegra schedule, until he had been hive free for six months. Then, she would work with us to wean him from his Allegra.

This is one of those cases - neither doctor is wrong, both have solid reasoning for their orders behind them, and if they were both in a room, I have no doubt they would discuss it and decide the best course of action. But they aren't. So, it's up to me to play a stressful game of telephone. And it's up to me to make the final call.

After talking it out with an amazing support system, I realized that our long term goal is health and healing. Ultimately, do we want to challenge foods, successfully? Of course, but we don't want to rush and possibly set back his current gains.

And so, we wait. Soy will still be there in 6 months, when hopefully, he is even healthier and hive free without antihistamines.

One Month Post-Camp

What are the long term expected outcomes expected from TCM camp?

I had this excellent question posed to me shortly after I posted our experience, and the truth was, other than giving Dr. Li a better sense of James and his condition (in many ways, huge), I wasn't sure what, if any, the long term physical outcomes would be. We are only a month out, but I feel confident enough to give an update.

Hives

He simply hasn't had any. His last set of hives was at my mom's right before we went to see Dr. Li and, for a month, he has been hive free. This may seem like a small milestone but, considering he had his first hives at three years old, and now at 13, he has never been hive free for an entire month unless specifically medicated. After the first three years, most of his hive episodes were mild and self-resolving, but relentless. Once or twice a year, he would have head to toe hives that took a week to a month to resolve, with varying degrees of medications.

Our last day with Dr. Li, we told her, a bit shocked, that James hadn't had hives for the entire week. Dr. Li suggested that, based on other patients, this might be the starting point for being hive free for a month.

"Well," I said, "I'll take it a week at a time. Actually, I'll take it a day at a time."

That we are here, at the end of the month, with no hives, is astounding to me.

Sleep

Acupuncture made James tired and more calm, so sleep was not a problem in New York. Usually, he takes a melatonin at night to help him sleep. I had made it a goal this summer to eliminate any melatonin, slowly over the summer. We realized returning from New York, that he had not taken any melatonin while we were there. So, taking advantage of a two week break, an established sleep pattern, and the time change, we continued not giving it to him.

This has been a moderate success. He has had some days he has taken melatonin; he couldn't get to sleep as he's gotten used to the time difference. This has happened maybe once a week. He's had other days he's stayed up later than I would like, however, that was the case with melatonin. 

He has used melatonin for years, so being able to sleep regularly and without drama is huge progress.

The Roller Coaster Ride

The Ups

Is he ok?

Yeah, he coughs like that when he runs or exercises. I told his pediatrician. She says it's normal.

That is not normal. Tell her again.

A conversation I had with a friend of mine, a nurse, last August. James was coughing, bringing up mucous, like he always did after he ran or played with his friends for any period of time outside. He often would cough so hard he would throw up, He often would not participate or take frequent breaks so he wouldn't end up doubled up, coughing helplessly.

Then, in April, he met his friend at the park, and as we were leaving he said, "You know what was weird, mom? I could run as much as I wanted and I never had to cough."

His friends wanted him to take a soccer class with them and, with reservations, I signed him up. He went on Monday, and never coughed. An hour of running, kicking, playing - freedom - and not a cough. He did say he had a slight burning in his lungs after, but no coughing.

For him to be able to play and breathe without worry is a priceless gift.

The Downs

The very next day, James had a patch of hives on his arm after being hive free for nearly a month. I was hoping for bug bites, but as we watched, the changed shape, came and went and came again - not bug bites. It was a small patch and didn't spread. The next day, he had no more hives and so far, has been hive free again.

My Thoughts

James has severe problems with environmental allergies. His cough never occurred when he played hockey, inside. So, the lack of a cough is a sigh that his environmental allergies are improving and I'm so thankful.

His hives are also likely caused by environmental allergies. Although he hasn't had an episode as long lasting as he did this Spring, he has had hives every Spring for the past three years. And the hives on his arm the day after soccer could have been cause by his exposure to pollen while at soccer (and actually, we spent the entire day outside for a field trip).

And here is my dilemma. By not limiting his exposure to pollen, I am causing his body to constantly react, to reinforce his allergic response. But, I do not want to rob him of his present in order to prefect his future. And being active and being outside is extremely important to him.

So, those of you with children with extreme environmental allergies who are in treatment, how do you balance this?

Chronic Hives

James's First Atopic Condition

As I mentioned here, James's first atopic condition was not food allergies at all, but chronic idiopathic urticaria (CU), or chronic hives, the cause was unknown. He was three at the time, and after a round of prednisone, the hives were still not well controlled. I can still remember taking him to his swim lesson, warning the instructor that he was: 1) in a very bad mood from the prednisone and 2) he may get hives during the lesson and not to worry about it. You could watch them spread over his whole body throughout the lesson and I was told, by a teenaged swim instructor, that she "really didn't think this was something not to worry about." 

After six weeks of the hives being fairly uncontrolled, we were sent to an allergist, who told me there was really nothing he could do. James would likely outgrow it. He told me to give him Claritin two times a day, twice the amount recommended for his age. And was not happy when I made him write it on a prescription pad. I was fairly certain James would overdose and we would end up in the emergency department with only my, "But the allergist told us to," as an excuse. As it turned out, he was on this dosage for three years. The only ill effect (which we didn't realize until he was off the medicine) was bedwetting. Every 6 months we would slowly take him off the medicines, only to have the hives return. 

Even when he outgrew the chronic urticaria, he still was prone to hives for other reasons: sap on his hands (making tree climbing a bummer), wet grass (I am guessing the pollen would stick to his skin, but it is only a guess), and hot water. He seemed to be outgrowing this last cause, however, this past couple of weeks it hives have recurred and so has the detective work. We are currently hoping for a virus.

What I've learned about Hives

As any parent whose child is James's age will tell you, the internet has changed radically the amount of information available for those suffering from a chronic illness (or, I would imagine any illness). When James first suffered from CU, there was a yahoo group, but valid information was sparse and access to research practically non-existent.

To begin with, 20% of people will suffer from hives in their life, and there's a variety of causes. People tend to assume an allergy (like food) when they see hives, but this is often not the case. As I mentioned earlier, viruses can cause hives (and it is, in my house, a hoped for cause). Allergic hives generally (not always) appear quickly from their trigger and so can be clearly identified.

There are various causes for chronic hives (beyond idiopathic). These include:

• Pressure/Scratching (dermographism)
• Cold urticaria - caused by a low temperatures
• Cholinergic urticaria - caused by a higher body temperature, from hot water, anxiety, exercise, even sweating
• Solar urticaria - caused by exposure to the sun
• And rarely, aquagenic urticaria, hives caused by water or any temperature. This is skin only. People who have this can consume water without any issue.

There are also more treatments. James is currently taking not only two adult Allegras but 2 Zantacs a day (Allegra is known as an H1 antihistamine and Zantac is known as an H2). He worked his way up until the hives were (mostly) controlled. He still has very minor breakthrough hives directly before he is to take his next dose. If someone is not controlled with these medicines, Zolair has begun to be used in some cases.

Link to Other Diseases

There has also been research linking CU to other autoimmune diseases. Thyroid disease is the most common autoimmune problem linked to CU, in some studies up to 40%. It's not something I worry too much for James, as he has no symptoms that are concerning. Somewhat more concerning is the link to celiac. James tests positive in his RAST to wheat and negative on his skin test. His current allergist feels his symptoms are more indicative of celiac than an allergy. However, gluten has to be in your diet for a celiac test. So, until he is cleared for a wheat challenge (we will re-visit the idea of a challenge in Oct after his 1 year blood test with Dr. Li), this will be an unanswerable question.

Emotional Toll

I have a true visceral response to hives. The way that James feels, and reacts, to any of his food allergens is how I feel about hives. It's not logical or reasonable. The hives can be controlled well with medications. James is not bothered by them, except if I make a fuss. And, he scratches his skin off. But, I remember. I remember the stares as the hives covered him and I did nothing. The judgement. The sitting with him in my lap with a phone in my hand trying to decide how bad things had to get before it became an 9-1-1 type emergency.

I'm an old pro at hives now. And all of it bothers me a lot less, except for the pit of my stomach that remembers. And does not want to go back.