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.

Allergy Friendly Dog Treats

In honor of National Dog Day, I'm going to share a couple of "recipes" (more like directions) for dog treats I make for this guy

He has been known to have digestive issues from liking his snacks a little too much. So, this first recipe is for those who want to have their treats and eat them too.

Pumpkin Dog Treats

1 can pumpkin

flour

Really, that is it. I put one can of pumpkin in the mixer. I add flour (for us, a blend of whatever GF I have on hand) until the mixture is able to be rolled.

Roll out thinly, cut into squares (or whatever shape) and bake for 20 min at 375. Flip and bake for another 20 min.

These can be stored at room temperature.

A photo posted by AllergicRevolution (@allergicrevolution) on Apr 23, 2016 at 2:50pm PDT

Liver treats

This one is for people who buy their meat in large quantities and so end up with offal. Or, those who don't mind handling offal for their dogs.

Ingredients

Beef Liver

Yup, that is it.

Cut the liver into small pieces (this is much easier if it is still partially frozen). I have a dehydrate setting on my oven but if you don't, you can set your oven to 200. Put on parchment paper on cookie sheets. I dehydrated it for a total of 2 hours, flipping at the 1 hour mark. That was not long enough and they are still sticky. I would recommend flipping every hour and dehydrating for at least  4 hours. I will update when I try this.

Especially because they are not completely dry, I am storing this in the refrigerator.

 

Is this it?

We traveled to New York last month for James's 20 month follow up with Dr. Li. I really have no new blood work results to report, because, on paper, his testing is perfect. His improvements, even from last July, when he had already made a huge number of gains, are incredible. With that in mind, my first query to Dr. Li was:

"Is this it?"

James's quality of life has improved so significantly since beginning treatment, combined with the difficulty of tapering his Allegra down further, made me think that perhaps we had reached the end point of his treatment - and I was ok with that.

Dr. Li felt he still could go farther.

Her first recommendation was to have him have a food challenge, still on Allegra, and at most half the normal dose for a food challenge, eating that amount regularly. One of the benefits of seeing Dr. Li each day was that I could relay this to James's local allergist and have a response while still in daily contact with Dr. Li. Many times I have wished I could get them both in the same room to hash things out - this was the next best thing.

James's local allergist did not outright say no, but definitely expressed concerns. His first concern was that if James was still taking Allegra, minor symptoms might be suppressed and any reaction might be more serious before noticed. To combat this, the allergist said we would have to admit James to the hospital for the challenge and have an IV put in.

The allergist's second concern was with EoE. I know this is a controversial subject. I am reporting his concerns, not adding commentary because I think the research is still out. He felt that OIT had an increased risk of EoE and not doing a full challenge was too similar to OIT. Challenging when we weren't sure that James's immune system was fully healed could put him at a higher risk.

So, ultimately, the ball was in my court. James's allergist was willing, but ... Dr. Li recommended it.

I asked Dr. Li if it was even possible for James to develop EoE; his blood work shows 0% eosinophils in his blood. She said that yes, he could. Eosinophils can be in tissue and not blood.

I will be honest, EoE terrifies me. James has had digestive problems in the past (and to some extent, continuing) and I don't want to tip the scales. It seems the ultimate jumping out of the frying pan into
the fire.

And so, we decided to wait.

Inadvertently, we seem to have started James's Allegra taper again. Last Tues, the pills got stuck in his throat and he threw them up. This Tues, he forgot to take them. Unless I hear otherwise, I'm going to drop his Tuesday dose since he's gone two weeks without it with seemingly little effects. October will be a year since we began the taper. My goal now is to be done by next October!

Goal Setting

When James started treatment, my goal was pretty clear: I didn't want him to be allergic anymore. The allergy seemed the mountain to be conquered.

What I didn't know was how ill he had always been. Having been told, "this is normal," what I didn't hear is: "This is normal for him. This is not life threatening."

The food allergies were obviously not normal and obviously life threatening, so they became the enemy.

His health improvement was so fast and so nearly complete that it quickly became obvious that his previous struggles were not normal, not even normal for him. It became clear how completely they were affecting his daily quality of life. Since it had always been that way, none of us knew.

He had a brief, slight regression and seems to have recovered. I realized that his allergies were no longer the main mountain we were climbing.

I want to clarify our goals while seeing Dr. Li this month:

• Can he maintain his gains (or improve more)?
• Will he be able to maintain them even when eventually weaned from treatment?
• Realistically, should we be planning on food challenges or should we be focusing on getting him healthy, without attempting to introduce the foods he's allergic to?

Protocol Update:

Currently James is taking:

• Digestion Tea 2 (in tea form, not capsules. Most of the teas he takes are in capsules. There's one herb in the capsule version he cannot have, so he gets the drinkable version). We give 1/2 a packer of 6 different herbs mixed together in hot water twice a day
• Shu Chuan Tea - 6 capsules twice a day
• Shi Zhen Tea 1a - 6 capsules twice a day
• Good Mood Tea - 5 capsules twice a day
• Niu Bang Zhi (2 packets), Huang Bai (2 tsp), and Shi Zhen (1 capful) mixed together in his bath once a day
• Cream 3vb once a day

His focus in treatment has shifted to focus more on his GI problems and keeping his skin clear.

Misdiagnosis

Allergies are particularly prone to misdiagnosis but, the truth is, as you can see in the infographic below, misdiagnosis is a common problem.

Part of this, I believe, is that doctors play the game of statistics. They are looking for the ordinary, what they see most frequently. In general, they get it right (19 out of 20 times). But, what if you are that one?

James was diagnosed by his first pediatrician with lactose intolerance, based on symptoms and statistics. Once he had that diagnosis, it was used by every doctor he saw to explain his frequent diarrhea and cramping. I was obviously not being careful enough with his diet. Eventually, I couldn't stand it anymore and removed all dairy, in all forms, from his diet and discovered for myself that lactose intolerance was not the problem.

Unfortunately, his gastrointestinal problems are returning. In talking to Dr. Li, explaining to her why he was misdiagnosed for so long, she said, "But of course you were careful enough!"

And truly, I was. Not that I can't make mistakes, but I didn't make nearly a decade of mistakes. I should have advocated, both for myself and for James, to get more testing and intervention sooner.

And honestly, I need to keep this in mind, because I am not convinced we have reached the end of his diagnostic tangles.
Adventist University of Health Sciences

Raw Truth

I wrote this last week.

I'm tired. A lot has nothing to do with James's protocol, but when life wears me down, it is an added "too much."

And, I worry. I worry that his health seems to be backsliding. He has improved so much since first starting with Dr. Li, but some of the old issues are starting to resurface - GI problems, complaining about breathing, tonsil stones.

And did I mention, I'm tired.

I'm frustrated that we can't successfully remove his antihistamines even though he's been down dosing since October.

Logically, I know he has been taking antihistamines for a decade. It's not surprising it would take some time to remove them.

But, I'm tired of his body being so sensitive and I'm tired of feeling like I'm playing whack-a-mole with problems.

And, that's my raw truth.

I let it sit. Posting on a low is tougher than posting on a high.

I had my consult today. I was reminded of what I already know: he has come so far. This is not a straight line treatment. His immune system is being rebuilt. There is progress he hasn't lost. Now, his treatment needs to change direction to support his digestion.

Am I still tired? A little. Would I like an easy solution? Hell yes!

But, what I have realized with a couple steps back health wise is that the progress made is precious. Even, dare I say it, enough. This is not to stay we're stopping. We're not done yet. But, I am going to stop looking at the endpoint as passing an oral food challenge. If he could eat all his allergens, but had daily hives and diarrhea - what is point?

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!