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 Post subject: Histamine Intolerance
PostPosted: Tue 06 Sep , 2011 2:55 pm 
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I've been on a gluten free diet for a year now, and I keep getting zinged by what I thought were micro quantities of gluten. Foods I thought were gluten free would cause a reaction and yet have no apparent similarities so I couldn't pin down another food and say, OK, I'm also intolerant to this. And this.

Sure, I knew I had a problem with chocolate. And coffee. And tea. But what do those have in common with tuna, and tomato based products and citrus fruit. And carrot cake, for goodness sake!!!

I'd had problems with all these foods, and yet I persisted in trying to fit it into the gluten intolerance model, by insisting that extreme micro quantities of cross contamination of gluten were causing my pain.

After my last episode of painful bloating after daring to try a gluten free restaurant, my older daughter tried to convince me it was psychosomatic. I insisted it couldn't be, but the next day my boss started saying that it couldn't be as simple as gluten intolerance. Maybe I was having some issues with complex proteins? I said that couldn't be, or else how could I be perfectly fine eating as much beef as I do? He told me it just wasn't reasonable to assume that ever increasingly small micro fractions of gluten could be causing a reaction this strong. I pointed out again how awful I'd been feeling before going gluten free and obviously the diet was helping. That I just wasn't being good enough about keeping ALL gluten out of my diet.

And I went back to my desk.

And began to think again. It's been a while, I guess. ;)

What's the most obvious reaction I've been having? Tuna salad. Every time I eat tuna salad (which isn't often, I grant) I have a strong reaction. So, I googled, "tuna intolerance". Silly, huh?

I found a page about histamine intolerance. Here's one: http://www.allergyuk.org/fs_histamine.aspx

Some people have trouble with foods that contain a lot of histamine. They lack enough of the enzyme necessary to break down histamine, and the result of this is a near allergic reaction that will not show up on allergy tests! It's dose related, not incident triggered, so it isn't a true allergy. I can eat small quantities of histamine containing foods and not be affected..... but if my meal contains several foods that are high in histamine, I'll have the normal unpleasant reaction I've been dubbing my gluten reaction for a year now.

The various web pages do not agree completely on what foods to avoid, but many of them do list wheat- which is why a gluten free diet helped me so much. But there are also a lot of other foods out there that can cause me just as much trouble, and now I know why! It isn't the gluten in wheat that was bothering me. It was the histamine!

How do I know this? Well, an experiment was in order. This weekend, I bought some rye flour which has some gluten, but is very low in histamine. And I made some biscuits. And I ate one. And I've been fine. A biscuit made half of rye flour has enough gluten in it that if gluten were the problem, I'd have been in agony.

But I wasn't.

SO, it isn't gluten that's the problem! And that's a good thing! Because the gluten intolerance model just wasn't working! I was still getting hurt by my food every few weeks or so. Now all I have to do is keep in mind the longish list of histamine containing foods and make sure I don't get too much in any one meal. And I can even, theoretically, take an antihistamine if I do start to have an intolerance reaction when I push the limits and exceed my quota.

I bet I could even sneak a bite or two of PIZZA and be OK... :) You know, just to remember what it tastes like, instead of avoiding even touching a slice because it might transfer a molecule or two from my hands to what I was eating and contaminate me! I can't eat much pizza, though, because it has too many ingredients on the *bad* list: Yeast, wheat, tomatoes, sausage, cheese, mushrooms.... it's just chock full of histamines! On second thought, perhaps I won't risk that!

Anyway, this is my retraction and apology.

I misdiagnosed myself yet again. Of course, most people go through years of misdiagnoses with doctors before arriving at a diagnosis like this, so at least I've saved myself all those doctor bills! :roll:

Histamine Intolerance.

It explains all the holes in the gluten intolerance theory.

But this time I'm going to keep my brain awake and continue looking for more answers if there are holes in this theory. I'd been trying to make the data fit the gluten intolerance theory and that's just embarassing. In hindsight, it's obvious something else was going on.


Last edited by MariaHobbit on Mon 30 Jan , 2012 6:53 pm, edited 1 time in total.

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PostPosted: Tue 06 Sep , 2011 4:24 pm 
The Grey Amaretto as Supermega-awesome Proud Heretic Girl
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:( Don't be embarrassed! It seemed like a very good theory, and you were seeing it work (at least most of the time).

I asked on FB about taking antihistamines on a regular basis. What do you think of that?

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PostPosted: Tue 06 Sep , 2011 6:03 pm 
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I don't think I could take the mind numbing effect of regular antihistamines. Maybe once in a while to interrupt a reaction, but not all the time.


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PostPosted: Tue 06 Sep , 2011 7:04 pm 
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Do you have that issue with the newer antihistamines (Loratadine and Cetirizine)?

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PostPosted: Tue 06 Sep , 2011 8:02 pm 
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I haven't tried them. Ever since I had a bad reaction to pseudoephedrine (tacchycardia) I've avoided anything but bendryl and only then for the worst poison ivy rashes.


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PostPosted: Wed 07 Sep , 2011 12:44 am 
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Well, that's good news! It should be easier to avoid histamines than to avoid gluten (I think).

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PostPosted: Wed 07 Sep , 2011 2:28 am 
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Well, pseudoephedrine is quite the different drug from antihistamines! I mean, pseudoephedrine is like taking speed.

Benadryl is the gold standard of antihistamines, obviously, but it does cause profound sleepiness (in most people). It might be worth it for you to try one of the newer, non-drowsy antihistamines. Zyrtec tends to make some people sleepy; it doesn't seem to bother me, but I take it at night anyway. Loratadine doesn't seem to work as well for me, so I don't take it.

The one thing I've found to be true about antihistamines as a class of drugs is that they work differently for different people. It does take some experimentation to figure out what works for you. For example, chlorphenimarine maleate throws me for a loop; it's like drinking 3 margaritas. It gives Katie hallucinations. Sarah is fine with it. :shrug:

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PostPosted: Wed 07 Sep , 2011 3:33 am 
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Most antihistamines now bring on a migraine for me. It is not, thankfully, a "true" migraine in that I don't get that ghastly headache, just the aura and the blindness and a mild headache/nausea. I find that Novopheneram (not sure of the spelling) is about the only one I can take and I take a very tiny dose of it or I still get the migraine.

Maria, I'm following this with great interest. My cousin is gluten-intolerant and it seems to be her actual issue. But I'll pass this information on to her.

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PostPosted: Wed 07 Sep , 2011 5:08 am 
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Um, guys, antihistamines like Benadryl aren't little molecular sponges that wipe up histamine wherever they find it. They're more like molecular road blocks. They counter-act the immune response in an allergic reaction by blocking histamine receptors on nerves, blood vessels, and immune cells. What Maria's talking about is a food intolerance. She can't digest histamine in what she eats. That's something totally different and antihistamines are highly unlikely to do jack shit in her situation. If there's a pill for this problem, it's a pill that'll replace or boost the digestive enzymes responsible for breaking down histamine.

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PostPosted: Wed 07 Sep , 2011 1:25 pm 
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:salmon: to River for being so reasonable and educated.







;)


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PostPosted: Wed 07 Sep , 2011 1:44 pm 
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Yeah, sheesh. :rage: I think the molecular sponge idea is a good one, so we should go with that.

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PostPosted: Wed 07 Sep , 2011 3:22 pm 
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I kind of suspected that about histamines and antihistamines. Little pacman-like nanobots that drive through the system scarfing up little histamine molecules would be optimal!

They do have a pill, and it does supplement the enzyme that breaks down histamine, but most sites I've read are still undecided about the effectiveness. And they are expensive, of course. Not something to use every day.

Jude wrote:
It should be easier to avoid histamines than to avoid gluten (I think).

:LMAO:
Sorry. :oops:

Well, not really, since wheat is merely a subset of the whole histamine intolerance issue. So, not only do I need to continue avoiding everything made with wheat, I get another whole list of foods to add to it. And the web pages I've found don't agree on that list, either. :suspicious: Just for fun last week, I consolidated the various lists to come up with my master list of forbidden foods.

It's ridiculously long:
Alcohol
Anise
Apricot
Artificial colors
Artificial flavors
Avocado
Bacon
Baking mix
Bananas
Beans, red
Beans, soy
Beer
Blue Cheese
Bratwurst
Buttermilk
Cake decorations
Candies, commercial
Cashews
Champagne
Cheese
Cherry
Chicken
Chickpeas
Chocolate
Cider
Cinnamon
Citrus
Cloves
Cocoa
Coffee
Confectionary
Cranberry
Currant
Curry
Date
Drinks, carbonated
egg white
Eggplant
Fish
Fish, canned
Flour, bleached
Gelatin, flavored
Gherkin pickles
Grapefruits
Ham
Icings, ready made
Ketchup
Kiwi
Loganberry
Mango
Margarine
Meals, prepackaged
Meats, leftover
Meats, processed
Milk, flavored
Mincemeat
Miso
Mushrooms
Mustard
Nectarine
Nutmeg
nuts
Olives
Orange
Papayas
Paprika
Parmesan Cheese
Pea
Peach
Peanuts
Pears
Pineapple
Pizza
Plums
Preservatives
Prunes
Prunes, red
Pumpkin
Raisins
Raspberries
Red Wine
Relish
Salads, commercially prepared
Salami
Sauerkraut
Sausage
shellfish
Soy sauce
Spinach
Strawberries
Sunflower seeds
Syrups, flavored
Tangerines
Tea, all
Tea, black
Tofu
Tomato
Tomato Ketchup
Tomatoes
Vegetables, canned
Vinegar, balsamic
Vinegar, red wine
Walnuts
Wheat
Wine
Yeast
Yogurt

After I finished making that list, I just kind of threw up my hands and decided total avoidance was impossible. I'll try to keep suspect foods down to one per meal (which seems to be working out OK) and completely avoid the foods I know cause problems.

It's a dose related issue, so as long as I don't get more histamine in a meal than I'm capable of breaking down, I'll be fine. Once I cross that line, though, that's when the trouble begins.


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PostPosted: Wed 07 Sep , 2011 4:30 pm 
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:( That's insane. You'd be better off making a list of foods that you can eat. It's probably shorter than your forbidden list. :suspicious:

But if you can approach it from a dosage standpoint that may be doable.

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PostPosted: Wed 07 Sep , 2011 5:46 pm 
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It's kind of silly, I agree. Who could follow all those *don'ts*?

The biggies, though, are fermented products, which is why bread is so bad for me. Yeast raised products are the worst, I guess.

There's a gluten free doughnut that Kinnikinnick makes. I can eat a couple of the little vanilla glazed ones just fine, but the cinnamon sugar ones bother me.

I suppose I can conclude that just the yeast in two of those is below my threshold, but if you add cinnamon, then it becomes Too Much.


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PostPosted: Fri 16 Sep , 2011 1:53 pm 
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I've been pushing the limits the past few days, and yesterday I finally exceeded mine. This morning I feel like I have a slight cold- stuffy nose, sore throat, itchy eyes- and of course the beginnings of the GI symptoms.

Since I don't think I really have a cold- just the start of a histamine intolerance reaction- my response is to skip breakfast. Since digesting food produces histamine, skipping the next meal seems to work as far as cleaning up the excess histamine goes. Limited resources are better utilized in cleaning up yesterday's mess when they don't have to deal with more histamine today. :)

I've been keeping a food/symptom journal for the past few days, and I will get a handle on exactly what it takes to keep under my tolerance level.

An oatmeal cream pie obviously wasn't the best decision yesterday. :P At least not on top of the other foods I had that day. :shrug: Or maybe it was the allergen load.... or the lack of exercise..... The journal should point out a pattern after a month or two. It's a bit of a juggling act.


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PostPosted: Fri 16 Sep , 2011 4:52 pm 
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:hug: I hope you can figure it all out soon.

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PostPosted: Fri 30 Sep , 2011 5:20 pm 
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I think I've got it figured out now- at least well enough that I've been to restaurants once or twice a week since the last post. Without incident.

I even bought a bag of wheat flour and have been baking a few things. I've found that stuff made with partial wheat flour is not an issue, but if I try to eat something made completely with wheat flour, the reaction builds up over several days. So, if I make something just with wheat flour, it's a once in a while thing.

To reduce my daily exposure, I dropped the wheat flour from the mix I use to make pancakes and waffles this morning and combined and rye flour for the first time.... and it turned out tastier than the oat and wheat flour ones! Or the oat and gluten free ones. I didn't realize rye tasted good. Every time I've had rye bread in the past, I really didn't like the flavor, but there must be something else in the recipe that causes that distinctive flavor. I think the bread is called pumpernickle? Maybe? I tried it once long ago and hated it and never got it again. And thus I was dubious about using rye as a flour, but it turned out well this morning. :)

I just hope I never run across any contaminated by ergot! :Q


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PostPosted: Fri 30 Sep , 2011 5:47 pm 
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Rye bread often contains caraway seeds. Is that the flavour that you don't like?

Sounds like your food world is getting better!

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PostPosted: Fri 30 Sep , 2011 6:16 pm 
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Well, there's pumpernickel and rye bread, including light rye and dark rye.

But now I'm curious, so I'll look that up.

http://en.wikipedia.org/wiki/Pumpernickel

Fascinating. "Devil's fart?" Wow. :uhoh:

http://en.wikipedia.org/wiki/Rye_bread
mind

I love all of these types of breads. (In fact, I just had two large slices of dark rye for my lunch. Yes, just the bread with nothing else. We were in a hurry.)

So it looks like pumpernickel in Germany is different than American pumpernickel. All are made with rye flour of varying amounts. And Americans like to add caraway seeds. I don't mind them. (I add them to an Irish bread I make around St. Patrick's Day.) But you can buy the bread without seeds. It's yummy either way.

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PostPosted: Fri 30 Sep , 2011 8:28 pm 
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Looks like I edited a word out earlier that I didn't mean to. :oops:

It's oat and rye flour together that make such good pancakes.

I don't know what flavor in the pumpernickle was so bad before, because yeast is still pretty much the most toxic thing I can eat- so I won't be experimenting with yeast raised anything.

But it's nice that I can go back to whole grain pancakes and waffles after a year of near tasteless gluten free ones.

It was kind of weird in the buffet restaurant today, though. It took some doing to pick out a harmless meal- and the dessert was near impossible. Last time I had a piece of pecan pie and didn't eat the crust (still yummy) This time, the only thing in the dessert section I could eat was some soft serve ice cream and some pecan meats sprinkled on it!

Coconut pie was out- can't do coconut. Pumpkin pie and apple pie and carrot cake were not OK because of cinnamon. Chocolate anything was out. Citrus anything is bad. The cobblers were of fruit I can't eat, cookies were wheat..... I actually felt kind of silly slowly going up and down the dessert section- bound and determined to get SOMETHING sweet to eat- and finally opted for the soft serve "ice cream". I'm not sure if it actually has milk in it or not, but I took a lactaid just to be on the safe side.

I managed it though. A completely *safe* meal. :) To make up for the pushing of the limits I've been doing earlier this week. Any other week I might have been OK with what I ate, but we were doing hay almost every day, and there are enough allergens in that to make me sneeze a little. Oh, boy. More histamines.


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