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Alpha Gal 101 And Histamine Intolerance Mast Cell Mastocytosis Linked? Mystery Reactions For An Alpha Gal Child

Green building and off grid modern prefab house blogging this week have been superseded by the health issues of our child, who was just diagnosed with Alpha Gal
In the ER eating the only thing she could
eat: organic boiled potatoes.
Yet 24 hours later, she couldn't
eat potatoes.

In the past week we have been to the ER four times, mystified more doctors than you can imagine, have taken more bloodwork and tests than you ever want to know, but are finally (finally!) starting to find answers. 

I am devoting this week's post to Alpha Gal (also referred to here as alpha-gal, as people use both) and high histamine intolerance in the hopes that it might help others. If you are suffering from Alpha Gal there is a great Alpha Gal group I recommend highly, much of the following alpha gal information was sourced from there.

Alpha Gal
What is Alpha Gal and how do you get it? Most medical professionals look at me blankly when I tell them our child was diagnosed as alpha gal, but as I begin to explain, they quickly recall reading articles about "that tick borne allergy to meat..."
Are you a medical professional? This is a must-read on alpha gal.

We love the outdoors!
And somehow encountered alpha gal.

With Alpha Gal, your body becomes extremely allergic to carbohydrates found in mammals and dairy, often reacting to the point of anaphylactic shock.  Unlike other food allergies, reactions are usually not immediate but delayed, often by hours, so people may not take it seriously when finally reacting vs. "I ate a peanut, my throat is closing, call an ambulance!" food allergy reactions.

In order to provide proper nutrition with dairy and beef / pork / lamb etc. removed, it makes sense to eat healthy foods like beans, spinach, other high protein vegetables and seafood, to embrace gut-enabling fermented foods, and soy. However, our child was reacting left and right to foods not within the Alpha Gal umbrella! Her face flushed and spots appeared over her joints and near her mouth to things that did NOT make sense.

I understood to avoid dairy and mammals. But why was she reacting to homemade bread? Fish?

Looking back, I believe it was a combination of Alpha Gal triggers that were "hidden" in food and medicine, paired with another reaction: high histamine intolerance / a mast cell issue. 

Reacting AGAIN, terrified AGAIN,
back to the ER... AGAIN.

The healthy foods you gravitate towards in order to be nutritious while avoiding Alpha Gal triggers, ironically are high histamine foods. So for a subset of sufferers, there IS a tie in with Alpha Gal to histamine reactions, too.

Here's what I did. In trying to decipher my daughter's mystery reactions, I decided to put foods into categories.  I knew she had Alpha Gal. But what of the mystery reactions? So I wrote down what you can't eat, by categories, and then to what foods she reacted, to see if it somehow matched up. The list of foods was so long (basically: everything) that after two weeks of fear and frustration it is much easier to write down what (kinda) worked. And even then she reacted, just not strongly enough to rush to the ER:

I also think these mystery issues started much further back, then came to a head- she was diagnosed with asthma three years ago, lyme disease two years ago, cat scratch fever a year ago... and I wonder if it's all related. Until now (and even now, testing) she has no food allergies. She is allergic to mold and sulfites, and now, alpha gal triggers.

Back in the ER and what does grandma
show up with? A purse full of
McDONALDS to feed this
organic, non-processed farm family.
True story I can not make that up!
Poor grandma.
She tried.

Check it out: beware hidden triggers in food and medicine!
*NO*: Do not eat! ALPHA GAL TRIGGER:
-NO mammals / dairy: (here's a good animal-avoidance list of hidden triggers)
-flu vaccine: She had a flu shot in December.
"The sugars found in meat from mammals is also in toothpaste, lotions, sunscreens, antibiotics and in some cases, vaccines. The flu shot, for instance, has gelatin in it, which comes from mammals.
'We have to order a special flu vaccine,' Powell explained. 'I just had to get permission from the state to have Will immune from having to take a booster immunization shot because it had a pork product in it.'”
So make sure you check ALL ingredients on shots, and ask how it is created- some are grown via chicken, some are via DOG KIDNEYS.
-NON VEGAN sugar, flour, rice (often processed via cattle char / bone char to bleach, which is charcoal made of... ANIMAL BONES.)
-GELATIN found in *medicine,* desserts: is bovine!
-GLYCERIN (= animal usually)
-Tricalcium phosphate can be bone ash
-Natural flavorings = often beef broth
-Most soy contains casein = cow
-Lactose, glucose, any -ose (also: heparin = porcine)
-Carrageen: inflammation
- magnesium stearate is usually bovine unless it says vegetable-based
- vitamin D3 - unless they say fish-based, it's mammal
- mono and diglycerides can be bovine...
- Sodium casinate = dairy
-Almost all prednisone contains dairy. Ask for compounding pharmacy to make liquid
-Avoid cats (I have thought about this one a lot. I suspect it's because cats lick themselves all over, constantly)
-Calcium/Calcium lactate = dairy
-Poultry sausage often has PORK casings! Get skinless and check all ingredients.
- Water filters! Often the charcoal is bone char!
-A lot of people who have alpha gal then react to any **sugar** not just meat carbohydrates
-Beware "plumping" of meat with injected additives, often animal based
Pip 2 takes Asmanex. I don't know WHY it took me this long to research it (maybe because we've been in crisis these past weeks after being diagnosed?) but yes, Asmanex contains dairy, the milk protein Anhydrous Lactose.
-School children: Check school supplies- many adhesives / art supplies are made with animal byproducts, including crayons.
- COUNTRY PEOPLE / Gardeners: Beware fertilizers, biosolid applications on fields, spraying! Contains MAMMAL. Much less the poison!
-DRYER SHEETS usually have mammal
- Plastic cups / Food containers!
"... Some of my worst reactions were to safe foods that I had put into gladware containers as leftovers. So, it took me a while but then I recalled an article I had read about animal fat in plastic bags to make them slick. I called gladware and they confirmed there may be animal fat in their plastic. So, the placing of the warm leftovers into the plastic was leeching the animal fat into he food and causing a reaction. I've since changed to all glass storage containers and have had no further issue. Red Solo cups also have animal fat in them. The company confirmed this but did also confirm it was "food grade"."
-SEAFOOD must be wild caught because otherwise it is fed... you guessed it: mammal gross agricultural by-products
-Note that most grocery store bread contains dairy! One safe brand (but always check) is Dave's Killer Bread.
-NON-ORGANIC FOOD: Oh gracious you had no idea that often they coat vegetables to keep them glossy and fresh -and- that meats are coated and injected with alpha gal triggers did you? Yep.

Beginner’s Guide to Hidden Mammalian/dairy ingredients in food to help with label reading 
(please note this list is not everything – you need to do your own checks as well – if in doubt, phone the manufacturer’s customer service line):

Gelatin/gelatine : rendered animal bones, tissue and skin. Mostly from beef and pigs.
Glycerin: also called glycerol or glycerides (mono, di, and triglycerides) –is present in all natural lipids (fats), can be from animal fats or plants. Also used in cosmetics.
Lard, suet, tallow, tallowates from animal fat.
If you see any of these terms in an ingredients list: oleic (or oleinic acid), palmitic, stearic, palmitoleic, linoleic and myristic acid. you may be looking at a substance sourced from animal tallow and it would be wise to contact the company to find out the ingredient’s origin.
Magnesium stearate: fat from cows, pigs and other mammals. Can be obtained from vegetable sources buy mostly from animal sources.
Lanolin: found naturally on sheep’s wool. Also known as wool wax or wool fat, it is a soft, yellow, waxy substance secreted by the sebaceous glands of sheep.
Lecithin: Phospholipids from animal tissues, plants, and egg yolks
Pepsin: Enzyme from pig’s stomachs (used in cheese)
Rennet: An enzyme made from calves’ stomachs.
Bone char: Derived from animal bone ash. It’s used to process white sugar and can be used to whiten salt.
Glucose (dextrose): Animal tissues and fluids (glucose can also come from fruits)
Derived from dairy: casein (milk protein) , caseinate, whey, milk solids, Lactose (saccharum lactin, D-lactose) also called milk sugar; lactin or lactic acid (an acid formed by bacteria acting on the milk sugar).
Albumen: Made from eggs, milk, and animal blood.
Methionine: Essential amino acids made from eggs or cow’s milk.

Other: (best to check with manufacturer)
Disodium inosulate: almost always derived from animal origin but mostly derived from chicken
Vitamin B2: (Riboflavin, Lactoflavin) -: mostly “chemically synthesised but a few companies still produce it from a beef or animal extract
Vitamin D2 (Ergocalciferol) : usually derived from plants or yeast. Can also be derived from animal fats
Vitamin D3 (cholecalciferol): mostly from animal sources like lanolin, milk, egg yolk and fish liver oil. Can also be derived from microbial or synthetic sources. Please note: synthetic vitamin D3 can have an animal ingredient as their starting raw material.

Beware microwaves and ovens in other people's homes / office! Rife with cross-contamination opportunity. Thnk of all the bacon they'e been splattering in the microwave each morning, the hams cooked for hours in the oven! Bring your own pan/utencils/ spatuala / etc. to help stay clean.

Read more advice on foods here, by Tim Opiela:
The following is the beginning series of Alpha gal shopping guide I am working on as part of a project. As always to improve my work, I encourage your feedback! This is not the complete guide to theProduce Department but a thumb nail sketch of my project. Alpha gal Allergy/ Syndrome series Ultimate Food Shopping Guide:
The Produce Department:
General Rule of shopping/Thumb:
Choose organic if and when your personal budget permits. Note the State of California has the nations strictest laws regarding the use of pesticides. So Look for the CA as the origin of the Fruit or Veggie. The reduction of pesticide exposure when the alpha gal activity reactivity is high will assist your gastric motility to function in a less taxing manner.
Nightshades more specifically Solanine & Tomatinc (an alkaloid merged with sugar). These include Tomatoes, White potatoes, Peppers and Egg plants.
(My note: I don't think the reaction to night shades are alpha gal as much as HIGH HISTAMINE INTOLERANCE triggered by alpha gal.)
Tobacco: Is considered one of these nightshades. So just another reason to quit smoking/ chewing.
Potato Pesticides Fact:
To remove over 90% of pesticides on a potato one must rinse it for 15 minutes in cold running water!
Alpha gal Friendly choices:
Sweet potatoes, yams, cauliflower, blueberries, grapes ( green over red), oranges, and melons ( Watermelon,cantaloupe, Honey Dews), Kiwi, Bananas ( unless you gastric motility is slow).
Super Veggies:
Cauliflower, Broccoli, Peas
Super Fruits:
Kiwi, Papayas, Star Fruit, blueberries, strawberries
Alpha-gal Friendly Mushrooms: Baby & Portobello, shiitake,
Avoid: White Button
Buying Leafy products? Look for biofilm on non organic heads including Romaine, Kale, and Collard Greens
What is Biofilm?
It is a clear preservative that has mammalian by product which is sprayed on to heads of leafy products.
How can I tell if what I'm buying a product that is covered if biofilm?
Take a single leaf from the head and break it half way up the steam. If you see a thin clear plastic looking layer, you are looking at biofilm. Be sure to wash your hands! (Note: organic does not have biofilm.)
Many Produce departments carry a variety of nuts. They are a great AG safe source of protein! Keep it simple stay with raw and unsalted nuts and trail mixes. (My note: Beware nuts with coatings! They usually use GELATIN to get them to stick to the nut! Or the coating also has triggers.)
The importance of the Produce department to someone with alpha gal is simple. It is a key natural source of sugars and proteins essential to an active, healthy Alpha gal Free Lifestyle.
It's not just about making sure your food and medications are trigger free.
Here is a starter list of things to replace with plant-based or synthetic alternatives: 

Toothpaste / Shampoo / Soaps / Detergents / Deodorant / Shoes / Socks / Clothes (no leather or wool) / blankets 

Thankfully, these days safe items are easy to find in CVS / Target / your grocery store. 

Here are some helpful resources to consider in your apha gal arsenal, as many of us with alpha-gal have inflammation, joint, reflux/stomach and nutritional issues:
  • I always start with the in-house organic brand of where ever I am shopping. Then I check anything questionable with the Is It Vegan? app.
  •  The facebook group is a great resource to search on safe recommendations for items by using the search bar on the left ex: anti-inflammatory
  • Vegan Vitamins (make sure all meds / vitamins are vegan so you don't get triggered by additives & capsules/coatings!)
  • Quercetin is an antioxidant / anti-inflammatory
  • a probiotic that helps lessen histamine like Probulin
  • Holy Basil is an anti-inflammatory 
  • I always travel with oregano oil as we travel so much, in case I need an antibiotic and can't get anything safe where I am (but of course see a doctor and find a compounding pharmacy that can make you a safe med!)
  • Barnivore: a site where you can check beer / wine / spirits to see what is safe
  • Traveling? Consider your "go to" the closest grocery store that is aimed at organic rather than putting yourself through cross-contamination risk eating out. You can always get distilled water and safe food at a grocery store! If you are meeting a group in a restaurant just eat before or discreetly bring something safe and nicely and apologetically say something to the manager about your allergy. 
We also switched our pets' food to chicken and not beef or lamb and that made a big difference. But we are very careful to play with them outside and not snuggle them too close!

For some, alpha gal brings on high histamine intolerance. So...

No foods that are...
See those knees? Bright red on joints
was another sign of reacting.

Fermented, aged (cheese, leftovers), pickled, smoked, or contain vinegar, shellfish/crustaceans, beans (Latin American RED beans and SOY), nuts, chickpeas, peanuts, citrus, pineapple, wheat germ, black tea, benzoate, sulphites, nitrites, glutamate, food dyes, ketchup, eggplant, spinach, pumpkin, mushrooms, canned veggies, egg white, cocoa, cinnamon, chili powder, curry, nutmeg, paprika... complete lists herehere and a handy dandy food chart here.

I have found the food intolerance list extremely helpful- because initially you might want to avoid everything, but eventually you can add back in nuts, certain beans, fruit, etc. Our daughter did very well adding things back in s-l-o-w-l-y.

I also wonder how many people finding themselves with high histamine issues are also asthmatic. Something to research. Is it a true alpha gal subset -or- a reaction *to* the asthma medications?

Overlapping with high histamine food avoidance but even more stringent: a complete list of foods can be found, here. Think: whole foods, but without dairy, gluten, GMO's, soy or corn and low sugar only from fruit.
NO yeast foods (is that why she suddenly can not tolerate bread?) but nutritional yeast is ok- it's the *process* of fermenting with yeast that causes histamine, not the yeast itself.

SUCCESS: (note: everything organic)
Looking at her reactions, she was definitely overflowing in her histamine bucket! A lot of items that were "safe" on histamine lists she still reacted to and I found they were often in the "no" on mastocytosis lists- like potatoes, bread...
She was able to eat sweet potatoes and chicken cooked 2 hrs without skin, at first. Later it didn't do so well. Less successful but tolerable were slightly unripe bananas, plantains that I sliced thin and baked ("Just like pita chips!"), apple sauce with *nothing* added like sugar or whatnot, cooked cabbage and watermelon. I was successful in baking plantains and zucchini (both very thin) in a sheet with a touch of unrefined coconut oil to make "chips." Homemade kale chips did well. Northern beans (cooked well) did well. If you are reacting oddly to things that do not make sense, check out that Mastocytosis Diet, we found a lot of the odd things she was reacting to were on that list. Also note rice and corn are inflammatory, and a lot of people have issues with gluten. Also quinoa is on the high histamine list, too. Rice, corn, and quinoa are staples for her when she's well. But if your bucket is full, maybe avoid.

Vegan probiotics and prebiotic is the big key to our gi not giving us too many issues...
Soak in a bathtub w/ baking soda and Epsom salts- it will draw out a lot of toxins-for 2x a week because it really helps.. add some lavender oil to the bath....... lavender is used for fighting allergens too... but only if you feel comfortable using it.
For all ok and not ok foods go here.)

Mast cell / Mastocytosis / Histamine are all linked.
Even organic flour is not created equal.
Make sure it is vegan to avoid cattle char!

"As with cancer cells, mast cells do not die, disappear, or cease to function, on their own. Unlike cancer cells, mast cells are normally good cells. But it's a case of having too much of a good thing. That can be just as damaging and life threatening as a malignancy. Every time a patient encounters a trigger, they risk their mast cells mutliplying in number. Too many mast cells will increase their suffering and eventually could potentially shorten their life span. So it is vitally important for patients to avoid triggering mast cell degranulation to both lessen their suffering, and preserve their quality and length of life."

Regarding chicken: we initially cooked it in a pan (with no oil, nothing, just a little water so it wouldn't burn) but she eventually started reacting to it... a friend said her son can only eat chicken if it is boiled two hours, without skin. I tried it and it made a difference. Also note that organic chicken is important because otherwise meat these days is "plumped" with solutions to add taste and juiciness that are made of solutions that are alpha-gal triggers!

Antihistamines are important for treatment of both alpha-gal and mastocytosis. HOWEVER after a few days on Zyrtec (we were breaking the capsules with a knife and telling her to lick the cutting board so that she wouldn't ingest the capsule to avoid reacting to gelatin in case it was animal-based) she was so depressed... so they switched her to Allegra. The UNC doctors recommend Zyrtec and Claritin. By now I had been steeped in medical research and knew to look at EVERY ingredient so when magnesium stearate caught my eye...  that too can be bovine! I called Allegra and it is vegetable based. But Alpha Gal sufferers warn others to regularly call the medicine companies to make sure product ingredients have not changed. Both Zyrtec and Claratin have alpha gal and high histamine possible triggers, make sure you call them as their inactive ingredients can change.

Alpha-gal sufferers also note that they can be affected by shampoos, soaps, etc. even the water they drink (well vs. tap) so do note that as well.

If you are suffering from high histamine / chest / breathing reactions, ask for a Peak Flow Meter. This has helped our child immensely as she endures panic attacks when her body starts reacting- she can check and document her peak flow daily so when she worries her body is reacting she can then check her peak flow meter and tell herself, "You're OKAY." You can get them from your allergist and even at local pharmacies.

BRAT diet approach vs. Changing Things Up
At first, scared, we tried to just feed her a food that would "work." Rice seemed fine, so I joked, "Maybe you'll just have to eat rice a few days until your body stops reacting!" So it was rice for breakfast, rice for lunch, rice for... and then, she started reacting. Tightness on her throat, stomach pains, splotches...

I tried potatoes. Seemed fine a day, then reactions. Kidney beans, same thing.
So then I decided that instead of feeding her one safe food, to switch it up so that no safe food was repeated within 24 hours.

From Healing Histamine:
We're *all* reseraching this! 
"An increasing number of doctors I have spoken with believe that strangling the supply of dietary histamine may cause the body to release more to make up for the shortfall. Why? Because histamine is an integral part of the immune system response, helps wake us up in the morning, gets digestion going, plays a role in our metabolism and is a neurotransmitter affecting serotonin, dopamine and GABA (and therefore our mood) [1]. You can read about histamine’s role in depression here and in schizophrenia here.
Just because you react to a food today, doesn’t mean you will tomorrow, next week or forever. One of the biggest  mistakes I made was not constantly challenging my body to accept a healthy food back into the rotation. In cases of moderate to severe reactions it is essential to work with a medical practitioner in doing so. Things change, the body heals and the inflammation bucket empties. Conversely, tolerating a food now is not guarantee you won’t react if you eat double the amount, or eat it later that day, next week or next year. As outlined in the aforementioned WHO report, histamine reactions are dose dependent, so if you’re dealing with pre-existing inflammation caused by prior histamine food ingestion you may have a reaction one day, but not on another when you have not been consuming high histamine foods or dealing with excess inflammation. 
There are many histamine/mast cell triggers other than food. Stress hormones can cause mast cells to release histamine thereby causing reactions. "
Food intolerance guide
for histamine foods.

There is a lot of sense in this.
However, we might have switched it up too much.
We are back to starting with two "safe" (for now) foods- sweet potatoes and chicken boiled without skin over 2 hours. But each day I add a well cooked (to break down protein) "safe" food like carrots or broccoli or (uncooked, slightly unripe) banana to keep it mixed up.

Are you traveling? Must eat out? Here is a list of restaurants who are more sensitive to those who suffer with food allergies. But more than anything I recommend eating in vegan / vegetarian restaurants so that you don't react to fumes.

I have a bunch of traveling tips / eating out ideas I wrote down here.

Alpha Gal Reading Club For Your Doctor And You:

Today I am grateful for homeschool. If we were in "real" school, due to a 2+ week horrible cold that hit our family last month, the weather, holidays, and now, food allergy emergencies, Pip 2 at this point would have easily missed a month of school. Instead, because she continues to do school when she is well enough and wants to each day, she is still, even with all this ruckus, two weeks ahead of even our "regular" annual education timeline to finish our school year by April! In homeschool we can also better monitor her and more safely feed her, as often it takes me hours to fix her a meal, because what worked yesterday might not be working today, and because each food takes so long to cook, then try.

I am grateful for homeschool because she can do school wherever, whenever.
Here, she is feeling better, it's 8p.m., and I know she's feeling well because instead of listlessly watching a movie she wants to do... math.

Funny story: (because we ALL need a funny story after this right?)
As we were in the city to see doctors, with multiple panicky Emergency Room visits, and just generally freak out, we were also trying to keep her mind off things. What a great idea to go to our favorite art museum with a favorite pal! What a great idea to see the Jasper Johns Edvard Munch exhibit! So off we went.

Maybe it wasn't the best exhibit for her to see.
Kinda depressing. Probably not what a
kid who is having panic attacks and
depression over her ailment should
probably see, not exactly uplifting...

Oh look! It's The Scream!
Nothing like The Scream to lift her mood!

Here's a picture of dead bodies and skeletons feeding
a tree that's feeding a pregnant lady.

Oh look. We just left the ER and she is reading...

Oh, look. All these people DYING. Nice!


Two weeks later, her body seems (knock on wood) to be finally, slowly stabilizing, as we stick to low histamine foods and completely avoid alpha gal triggers.
There are doctor appointments and more test results coming in.

We hope to return this week to our normal life off grid, hugging equines and enjoying the modern prefab house.

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At 1/23/17, 5:53 PM , Blogger Unknown said...

Prayers for you and your family. I hope you find a diet that works for her. I honestly don't know how I could take watching one of my children suffer that way. God bless you all.

At 7/6/17, 1:09 AM , Blogger Jennifer said...

My husband has had masto for years and just got diagnosed with alpha gal. Your strength in the time of challenge is remarkable and it's comforting to know that there are people out there like you who are sharing in the experience despite it being so difficult. I've almost lost my husband on many occasion and the new light that has been shed on his disease(s) has brought new hope in that at least we know have the power of avoidance. I wish you and your lovely family well. Your research is very helpful for us - so thank you and please be well. Your beautiful child is so sweet if I could, I'd take a few episodes off her hands (I say the same for my husband) - it's so hard to watch the ones you love suffer- may you be blessed and may she live a joyful, long, happy life. Jen Gambino

At 7/6/17, 8:11 PM , Blogger Passive Solar Prefab Homes said...

Jennifer and Lee,
Thank you so much for your kind comments. Months later, our child is "stable" but what that means is that every day she is still up and down, just not triggered to run to the ER. Jen, as you know, the alpha gal + high histamine + mast issues makes it especially tricky. Both of your comments lifted us all, thank you and sending you all love and blessings.
Kind regards,
The Casatis


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