Faith's Journal: Histamines! Mast Cells! And More!

[faithberry]

It seems as though I have underestimated the significance and power of this disease (LC) due to both my lack of knowledge and inaccurate information from doctors. As my biopsy showed only mild infiltration and my loose stools resolved relatively quickly on a gluten and casein free diet along with limiting other intolerances, I thought I was home free. I believed what it says in several medical articles---that MC is a self-limiting, short term disease, and somehow missed the 'chronic' part!

In the past three years I’ve had several periods of serious C. The current one has lasted about a year with symptoms of gas, bloating, abdominal pain, serious weight loss, and more and more food intolerances. Now I can only eat a handful of foods.

My new G. I. doctor reviewed my previous colonoscopy and biopsy results, which indicated mild LC, but he told me this couldn’t be a recurrence because “those people have 20 bowel movements a day” not C. He said my weight loss is due to mental factors, gave me a motility drug (which I can’t tolerate due to the other ingredients, which he said is just in my mind too), and sent me on my way.

Thanks to Tex, I now know that it is possible to have C-Dominant LC, and I’m very likely having a relapse. Unfortunately, I now appear to be having malabsorption too. This was not the case when I was first diagnosed. My fecal fat score from Enterolab was well within the normal range. This suggests the LC must be getting worse, and may be effecting the small bowel as well. The small bowel biopsy was also normal when I was first diagnosed.

I’ve been warmly welcomed into the Double DQ1 club and learned that, “individuals with double DQ1 genes have multiple/many food intolerances, and typically have a much more difficult time achieving remission.” It’s a bit of a shock to realize that this means me and what I've been living. At the same time, it’s a huge relief to know what’s probably going on with my body and that there are solutions.

I’m extremely grateful to Tex and to everyone participating in this forum. This is definitely the place to learn about MC.

Before I had my eyes open to the possibility of C-Dominant LC, I thought I might have mastocytosis or mast cell activation disorder. I haven’t excluded the possibility that one of these might be a co-existing condition. Because of this, my first step is a trial of Gastrocrom (sodium cromoglycate) a mast cell stabilizer, if I can tolerate it. If it doesn’t work, then I’ll consider Entorcort.

Never let a doctor tell you that constipation does not indicate MC. There are a few studies to back this up, which can be found through a google search. Find a doctor who will at least give you the benefit of the doubt and give you a trial of appropriate medicine or another colonoscopy if you wish.

I don't know how often I'll be able to post in this journal, but if even this one entry is beneficial to someone, I will be very happy. My case is unusual so maybe it will resonate with someone one day.

[faithberry]

Here are my symptoms. The first set could be related to mastocytosis or mast cell activation syndrome.

From The Mastocytosis Society site:
Abdominal pain
Bone pain (infrequent, brief)
Cognitive difficulties; brain fog
Degenerative disc disease (undiagnosed)
Diarrhea (in the past before altering diet)
Dizziness, vertigo, lightheadedness (in the past)
Fatigue and drowsiness
Flushing (with certain face lotions; muscle gels)
Reflux
Rashes, pimples
Intestinal cramping and bloating
Itching
Headaches; some migraine like
Muscle pain
Nausea
Osteopenia
Peripheral neuropathies (burning, twitches)
Paresthesias (tingling toes & fingers)
Vomiting
----------------
Others:
Sneezing
Weight loss
Low blood pressure (90)
Constipation
Ocular migraines
Joint pain
Rapid heart rate (only under super stress like public speaking)
Heart flutters
Difficulty swallowing
Tinnitus
Hot flashes
Fibroids; removed in 2001 (seems common to mastocytosis and MCAD)
Reactions to drugs: morphine, EDTA, No-Doz, Tylenol, Xanax, 1 antibiotic

Most symptoms are triggered by foods, fragrance, odors, environmental chemicals, cold, too much sunlight, or mold. A few others are ongoing.

Many of the symptoms could be systemic expressions of the LC and a few others could be connected with reduced glucuronidation due to Gilbert's Syndrome. Then there's also the question of Histamine Intolerance, inhibition of the diamine oxidase enzyme, which can be connected to IBD, and which could cause some of these symptoms. And then there's the possibility of mastocytosis or mast cell activation disorder as well, which is very difficult to diagnose.

Several of these problems are not acknowledged by traditional doctors. So it's a little tricky to see the forest for the trees.

[faithberry]

Today I had a blood test for serum tryptase, a marker of mast cell activity, and for a few other ones I need periodically. I wanted to give the mast cells something to act up about without making myself too sick. Here’s my menu of forbidden foods that generally do not cause severe reactions.

I took two antihistamines yesterday (morning and evening) and will take two today as well (Xyzall 5 mg. each time) for protection.

Dinner last night
Quinoa
Carrots
Zuchhini
Rice/Chestnut flat bread (no other ingredients except salt)

Breakfast today
Basmati rice (white)
Carrots Zucchini
Rice/Chestnut flat bread (no other ingredients except salt)
One small orange (this is a true mast cell degranulator)

None of these foods, except the orange, are mast cell degranulators. However, in mast cell activation disorder, just about anything can activate the mast cells. It varies from person-to-person.

I did have mild reactions, like mild-moderate abdominal pain at 3 AM, among others, but I was able to get back to sleep and the pain was better when I got around 6 AM. Histamine is at it’s high point in the wee hours of the morning so this may explain why I often have abdominal pain in the middle of the night. I also had a little rash on my chest in the night, but it was gone at 6 AM. I was surprised that the reactions were relatively mild, and this must be due to the anti-histamines.

I had a whole juicy, delicious orange this morning, first thing. I haven’t had an orange in eons. It’s strange that I haven’t had any particular reactions yet and it’s early afternoon. I do have the puffiness under my eyes, I look a little worn, and I have a little pain in one arm from using the computer but no other big problems. Generally, I get itching and burning from fruit. It must be that the anti-histamine help, or I don’t have an issue with mast cells or I can suddenly eat all sorts of food (LOL). But histamine does seem to be some sort of culprit since the anti-histamines help!!!!

The anti-histamines are possibly a double-edged sword. They remove the symptoms, but they don’t stop the mast cell degranulation. That would be OK and necessary if I didn’t also need to consider the LC. By removing the symptoms, I may not know which foods are causing problems. Since I have chronic C how can I ever know if it's a food I eat due to LC or mast cells playing havoc with the nerves? I have it all the time. The Gastrocrom stabilizes the mast cells instead of just alleviating the symptoms so it should give me a clearer picture of what I can really tolerate…if I can tolerate it! Hope to start it next week.

[faithberry]

My magic bullet for C is Colosan. It is oxides of magnesium that release oxygen in the colon. The powder version doesn't contain any additives like citric acid, which is a histamine liberator and causes me problems. The capsules do contain other ingredients. I use the powder version!

I take a little more than 1/2 tsp. every night in water and I have a good BM the next day. A full tsp. will cause me to have looser stools.

[faithberry]

The diamine oxidase enzyme has been released in the U.S. as a food intolerance supplement under the name 'Histame'. This is for people who have trouble with histamine foods, possibly because of low production of this enzyme due to damaged villi or for other reasons. You can find the link to the research article on 'Histamine and Histamine Intolerance' here, as well as my discussion about it with Tex.

www.perskyfarms.com/phpBB2/viewtopic.php?p=60172#60172

When I tried the German version of this product (DAOsin) it gave me true gut problems, probably due to the long list of 'other' ingredients.

[faithberry]

Histamine information from www.histame.com

This list of foods that may increase histamine levels differs slightly from the Vickerstaff Histamine-Restricted diet found here:

http://www.urticaria.thunderworksinc.co ... tamine.htm

I've never seen two lists that are consistent. This list includes kiwis, bananas, and pears - all a problem for me. They aren't on the Vickerstaff list, which is an older list. So, here's the information from Histame---

Histamine levels will vary based on the maturation process and the degree of freshness. The longer food is stored or left to mature, the greater its histamine content and the more problematic it can be for individuals with food sensitivities and intolerance.

Fresh meat contains no or very little histamine. However, when meat is processed further, the maturation process results in the accumulation of biogenic amines.

The same is true for fish. Fresh fish contains no or very little histamine. However, fish spoils very easily and this leads to a rapid accumulation of histamine due to bacteria. Further processing, which includes salting, smoke-drying, marinating and preservation, may increase the histamine content.

Examples of foods/substances that may increase histamine levels resulting in symptoms including digestive problems, headaches and skin rashes are:

* Alcohol, particularly red wine and champagne. Also white wine and beer.
* Aged, smoked, canned fish and fish sauces. Tuna fish, mackerel, sardines, anchovy, herring, catfish, salmon.
* Pizza
* Smoked and processed meats such as salami, ham, bratwurst and bacon
* Sauerkraut
* Certain vegetables: tomato, spinach, eggplant, avocado, mushrooms and canned vegetables as well as commercially prepared salads
* Certain fruits: strawberries, bananas, papayas, kiwi, pineapple, mango, tangerines, grapefruits, red prunes, pea
* Red wine vinegar, balsamic vinegar
* Soy sauce
* Cheese
* Mustard
* Ketchup
* Sunflower seeds
* Chocolate/cocoa
* Coffee, black tea
* Some fruits: citrus, bananas, strawberries, red prunes, pears, kiwi, raspberries, papaya
* Bread and confectionery made with yeast
* Peanuts, cashews, walnuts

Drugs/Substances that may block intestinal DAO

* N-Acetyl Cysteine
* Cimetidine
* Amino guanidine
* Isoniazid
* Alcohol

[faithberry]

I developed two mouth sores after that delicious orange. One 1.5 days later and one another 1-2 days later. It was a good experiment for the purpose of the blood test, but I'm not going to be eating another one soon! Unless I do the h.pylori breath test, which requires orange juice.

[faithberry]

Food Allergen Cellular Test, Genova Diagnostics Europe

http://www.gdx.uk.net/index.php?option= ... v=doc&id=4

Tests reactions at the level of white blood cells, including reactions that occur due to the release of mediators from different cell sub-populations, including mast cells.

To get the full information download the pdf called 'test description' and the pdf call 'FACtest Deconfusing Allergies," which can be found by clicking on 'additional information.'

I want to check this out once I start eating more foods again. Now it would just tell me I'm reacting to everything.

[faithberry]

There is another excellent article on Histamine Intolerance by a nutritionist at Vickerstaff Health Services:

www.allergynutrition.com/faq.php

This is the FAQ page. Click on 'Histamine Intolerance', then 'Question' and then click on the 'Answer.' At the end of the question there is an opportunity to download a pdf called 'Histamine Intolerance,' which is the terrific 4-page article.

I learned in this article that lectins can trigger histamine release without an antibody-antigen reaction.

Vickerstaff-Joneja is the nutritionist who developed the histamine restricted diet posted at the International Chronic Urticaria Society site.

[faithberry]

From Mastocytosis Society Yahoo Group:

Yes, most protein powders, vegetable protein or broths (as in most canned tunas), are hydrolyzed... another word for msg in the sense that msg is made from a hydrolyzing process and release histamines; and other additives, such as autolyzed yeast, are also hydrolyzed... you can even make an 'msg' from long cooking of meats to release the proteins through the breakdown of the protein matter. As one who is highly msg sensitive, I can not eat anything from hydrolyzing, including modified food starches or even corn starch, or citric acid which is made from hydrolyzing corn (yes!), or artificial or natural flavorings as they are all made from a soup of hydrolyzed chemicals... hydrolyzing does release histamines ... even hair perms have hydrolyzed components, so again, a no no from anyone who is msg sensitive. When you think about it, almost everything in a can or box is made from breaking down and then remixing. Most pills have a binder so I have reactions from them as well. When I was at my worst I couldn't even have concentrated juices, now I can.
Judy

[tex]

are hydrolyzed... another word for msg in the sense that msg is made from a hydrolyzing process

FWIW, unless I am misreading this, the author seems to be a bit confused about how MSG is made, and exactly what hydrolyzed means. From a chemistry viewpoint, the definition of hydrolysis simply refers to the use of water, to split a molecule, in order to form a different compound, or compounds. No other processing is required, in order to fulfill the requirements of that definition. IOW, the material is simply added to water, (or vice versa), and the transformation occurs, (though in actual use, of course, other processes are indeed often involved, though not necessarily in the same step).

That is not how MSG is made, however. True, up until about 40 years ago, it was made by hydrolysis, but since the 1960s, commercial MSG has been, (and still is), produced by the fermentation of starch, sugar beets, sugar cane, or molasses. Prior to the 1960s, MSG was prepared by the hydrolysis of wheat gluten, and that's presumably why many celiacs believe that they cannot safely eat MSG. Obviously, that's an obsolete belief. That's not to say, of course, that all celiacs can safely use MSG, because they may be intolerant of it for reasons other than gluten.

Probably, what tripped up the author, in addition to the obsolete belief that MSG is made from wheat gluten, is the fact that MSG, in its pure form, undergoes a hydrolysis process in the human body, after it is ingested. When dissolved in water, (or saliva), MSG splits into sodium cations and the anionic form of glutamic acid, which, of course is a naturally occurring amino acid).

Also, even if MSG were actually made by hydrolysis, that would not confer any "license" to redefine the process of hydrolysis, to imply that any process involving hydrolysis, is in any way equivalent to "making an MSG" - that would be a pretty broad stretch of the imagination.

That doesn't imply that everything the author said is without merit, it simply calls into question her understanding of what actually is going on with MSG.

Tex

[faithberry]

Started Gastrocrom today with one ampule mixed in water. The instructions are to start with one vial and then increase by one vial every two days. No mega reactions. It tastes like water with just a tiny grainy taste. It does leave a very mild taste in the mouth, which lately feels salty. That's OK with me.

I recently learned that I was exposed on several occasions to a floor maintenance product that contains toxic ingredients and was not applied properly, with the required safeguards. This explains a lot because whatever you breathe, you swallow. The gut can be a target organ for toxic chemicals, as can just about every system or organ in the body. One of the ingredients of this stuff is an immunotoxicant, so it can alter immune function. With my lymphocytic colitis history, my immune system would already be primed for quick action, and I am probably more vulnerable than your average healthy person. I believe I had another toxic exposure prior to this involving high sulfur heating oil, which made me vulnerable as well, then, I think, a bug triggered the LC. That's how it works with autoimmune conditions, there's a genetic propensity and then an environmental trigger, whether it's a bug, a toxin, etc. LC is not yet determined to be an auto-immune condition, but that's one theory.

I'm so grateful to know this so now I can get the right treatment! I feel my health has already been slowly turning around by minimizing my exposure and by listening to my body and eating very simply.

[faithberry]

The Gastrocrom did not go well. I had many more reactions, but nothing mega like a migraine. I'm giving it a break and considering whether to try a smaller dose.

Since it contains sodium naturally it's going to increase stomach acid, which means histamine release, and I'm not able to take H2 blockers. So of course I had some reactions!

I don't really know what my illness is, and I would be much happier not taking drugs if at all possible. Wondering if I can just do this with food. I see my gut is much more damaged than I ever thought, more than when I was diagnosed with MC and took my Enterolab tests. Maybe it's the chemical exposures. I need to reflect on this more. But for the moment I really get what Tex says about it taking a long time to heal the gut and see I need to eat very digestable food.

[faithberry]

Started my homeopathic medicine to treat the toxic chemicals. It contains napthalinum and petroleum! My previous exposure to toxic chemicals was heating oil, another petroleum hydrocarbon. My health fell apart during the period I lived in that home, but it was the 'bug' that triggered the huge decline, starting with the D, abdominal pain, nausea, etc. That exposure (to the heating oil probably not vented properly) likely made me more sensitive to the petroleum hydrocarbons and is why this next exposure has really taken a toll on me and actually made me super chemically sensitive.

[Dee]

(I Have 2 Symptoms Out Of Them All..)
From The Mastocytosis Society site:
Abdominal pain
Bone pain (infrequent, brief)
Cognitive difficulties; brain fog
Degenerative disc disease (undiagnosed)
Diarrhea (in the past before altering diet)
Dizziness, vertigo, lightheadedness (in the past)
Fatigue and drowsiness
Flushing (with certain face lotions; muscle gels)
Reflux
Rashes, pimples
Intestinal cramping and bloating
Itching
Headaches; some migraine like
Muscle pain
Nausea
Osteopenia
Peripheral neuropathies (burning, twitches)
Paresthesias (tingling toes & fingers)
Vomiting
----------------
Others:
Sneezing
Weight loss
Low blood pressure (90)
Constipation
Ocular migraines
Joint pain
Rapid heart rate (only under super stress like public speaking)
Heart flutters
Difficulty swallowing
Tinnitus
Hot flashes
Fibroids; removed in 2001 (seems common to mastocytosis and MCAD)
Reactions to drugs: morphine, EDTA, No-Doz, Tylenol, Xanax, 1 antibiotic