Adapting to AGS Part 1: Understanding Tolerance Levels

Alpha-gal syndrome(AGS), a potentially life-threatening allergy with delayed reactions to mammal products, is an intimidating diagnosis to be faced with.  Initially, the shock of giving up beef, pork, lamb and other mammal meat is upsetting, but it seems simple enough, right?  Unfortunately, after a little further research online it quickly becomes apparent to new patients that this allergy goes far beyond missing out on steak night. The alpha-gal molecule behind reactions is found in all mammal products including dairy products, lanolin and gelatin (among others).  Cross contamination(cross-contact), is also frequently a problem, and even reactions to carrageenan, a red algae extract containing a similar compound, are reported.  As a result, it isn't long before most patients encounter "shopping paralysis", a state in which one spends hours at the store staring at labels, having no clue how to know if a food is safe to eat, and coming home with next to nothing.

Tolerance Levels

The first thing to be aware of is personal tolerance levels.  Not everyone with alpha-gal syndrome needs to avoid every possible source of it as different types of ingredients have different concentrations and individual tolerance levels vary greatly.  In fact, a significant number of people with AGS only need to avoid pure mammal meat/organ products to prevent noticeable reactions, which is why most doctors try to avoid overwhelming new patients by suggesting that they only avoid red(mammal) meats like beef, lamb, and pork.  Those who react only to pure meat still need to avoid meat extracts, broths, flavorings and the meat itself, but these are relatively simple to shop around. The luckiest patients have no cross contamination reactions and can even continue to serve mammal meat to others; a few can even get away with lean red meat from time to time, but it is recommended that at a minimum all mammal meats and organs be avoided, even in those with especially high tolerance levels since one slab of meat to the next can have drastically different results. Sadly, some people really do need to avoid more than just chunks of mammal meat, so if you still have symptoms after removing just mammal meat from your diet, make sure you give your doctor feedback so they can suggest the next level of foods to avoid (and that they are aware you are among the more sensitive). It is well worth it to find your own tolerance level since the less sensitive someone is, the less they need to watch out for while shopping.  Even if your ultimate goal is to remove all potential alpha-gal sources from your diet and/or environment, starting out with the minimum avoidance necessary will make it easier to adjust, and give you time to learn more about managing the condition.  You can always tighten your avoidance later as you get a handle on things. For more on managing the chore of label reading, check out the rest of this four part series.

How Tolerance Levels Are Found

There are a few approaches to finding tolerance levels, and they are essentially the same as those used in finding rare allergies and sensitivities in general.  Food journaling and the 2 methods of elimination diets are invaluable tools.  The first method (subtractive) is to remove one category of food at a time to see if symptoms end.  The second (additive) is to eliminate all processed foods, and once reactions end, add products back in slowly while keeping a close eye on the ingredients in each.  Products that are less likely to result in a reaction are tried first to minimise the risk of a large reaction occurring.  When a reaction does happen, the ingredients in the offending food can be examined more closely and eventually the tolerance level will emerge. The subtractive method is usually chosen if reactions are very clearly linked to meat, while the additive method is better for muddled symptoms and relationships, or for cases with especially severe reactions.  Often a doctor will begin with the subtractive strategy and suggest removing all mammal meat, but then if severe reactions persist switch to the additive strategy.  Many will also suggest keeping a food and symptom journal from the beginning.  That way, if lesser reactions are still occurring despite halting anaphylactic episodes, they can still be detected by reviewing the journal and avoidances adjusted as necessary. Regardless of which technique/combination you end up using, be sure to get guidance from your doctor along the way to minimise the risk of serious reactions.

Tolerance Categories

When relying exclusively on the subtractive method, picking the next item to try avoiding was once a bit of a shot in the dark, but recently, thanks to support groups putting their collective experiences together and doctors becoming more experienced, a roughly consistent pattern has emerged.  Each item of avoidance tends to indicate the next level of sensitivity, and anything above it in the list usually needs to also be avoided once reactions to something below begin.  There are, of course, any number of exceptions, but the most inconsistent seem to be gelatin and carrageenan.  For example, some people react to meat and milk products, but not carrageenan and/or gelatin while others react to meat and carrageenan(and/or gelatin) but not milk products. The typical order of importance in avoidance is usually something along the lines of: mammal meat/organs, meat cross-contamination, carrageenan, gelatin and mammal rennet(some cheese), dairy, lanolin, dairy cross-contamination, trace source processed mammal products, carrageenan/lanolin cross contamination in food.

Reducing Environmental Alpha-gal Exposure

The most unlucky cases of AGS (usually after many tick bites and/or years of untreated/unrecognized reactions) may find that removing food products is no longer enough to prevent symptoms.  When all food and cross-contamination sources have been removed and symptoms continue, one may need to begin looking at other sources of alpha-gal.  Cross contamination is usually worst when it comes from ingesting food products, but sometimes it can come from other sources.  As long as the alpha-gal can find it's way into the body, it can cause a reaction, so when reactions persist it is worthwhile to examine other household products.  Reducing environmental exposure to alpha-gal may also leave a little more wiggle room for tolerating foods and medications. The following is our suggested order of non-food items to check and remove mammal products from ordered by most likely to cause problems/easiest to find mammal free versions of:

• Supplements and over the counter medications
• Personal care products that stay on the body like lotions and cosmetics
• Personal care products that are washed off like soaps
• Household cleaning products
• Other family members' personal care products
• Pet food and pet care products
• Only if absolutely necessary, prescription medication

The goal is to save any possible tolerance someone may have for use in taking vital medications by removing contamination from all other sources first.

Keeping Mammalian Pets

One of the most horrifying moments many alpha-gal patients go through is when they realize their beloved pet is a potential source of alpha-gal, and since we just mentioned pet care products we wanted to take a moment to address this.  Thankfully, it is extremely rare for someone to become sensitive enough to need to give up their mammalian pets (though adding new ones is not advised in the off chance that it does become an issue).  In almost all cases discussed on support groups, people have found that changing their pet's food to be mammal free (ie chicken) and using vegan grooming supplies end their reactions.  The main exceptions to this have been owners of livestock such as sheep and cows which seem to express a lot more alpha-gal in their skin than dogs and cats. Despite the fact that mammal pets can still be kept, there are a few precautions that are worthwhile if you are dealing with mystery reactions or wish to reduced all trace sources in the environment.  Aside from changing pet food and grooming supplies to mammal ingredient free brands/formulations, investing in a HEPA air filter to keep near where your pet spends most of its day will dramatically reduce any shed skin cells floating around with trace amounts of alpha-gal on them.  As hard as it may be, giving your pet its own bed to sleep in instead of sharing yours will keep those same skin cells along with oils out of your sleeping area and away from your mouth.  Washing areas that come in contact with pet saliva right away is highly advisable as contact with body fluids is the only commonly reported source of reactions from pets (though the diet change helps a lot with dog slobber dermatitis).  Some also make a habit of washing after petting their animals, especially oily coated dogs.

Airborne Sources of Alpha-gal

The most troublesome environmental source of alpha-gal is the airborne kind.  Not only can airborne alpha-gal redeposit on food and lead to indirect cross-contamination that way, but it can also cause small cuts and abrasions to turn red and irritated when it lands on the skin.  Surprisingly, very few people actually experience lung reactions to airborne alpha-gal such as that found in shed skin cells (this is one of the unique features of AGS), but suspended fat droplets from cooking are another story for more sensitive AGS sufferers.  If you are sensitive to cross contamination and encounter airborne alpha-gal, it is advisable to wash your face and hands as soon as possible to prevent it from migrating into your mouth.  Again, if you are not reacting to cooking fumes or cross-contamination, then there is no rush to address them. Some unlucky sensitive cases react to breathing in alpha-gal containing particles.  These reactions usually begin within 30 minutes, and the typical cause is smoke from burned mammal fat.  Airborne fat particles from frying are also an issue, and mammal fat based dryer sheets are a common complaint.  Because the alpha-gal is going in via the lungs, the normal delay is gone.  Thankfully, these reactions are not usually life-threatening unless the patient also happens to have asthma, but they can still be quite severe and unpleasant. Airborne reactions are very similar to pollen type allergies beginning with burning watery eyes followed up with major sneezing and coughing involved.  Many patients have reported extreme body aches and fatigue the day after airborne exposure as well, though it is not clear what mechanism is behind this.  Remove yourself from the area at the earliest sign of one of these reactions if at all possible, and if you have had one before, leave places where you can smell meat cooking to help prevent a coughing/sneezing fest.

Cleaning Out The Kitchen

In really bad cases of alpha-gal syndrome, it may be necessary to take extreme measures in removing all traces of mammal from the kitchen, but for most people with AGS this is an optional task that is performed to help leave more wiggle room in other areas of potential alpha-gal exposure.  If you are feeling overwhelmed, don't worry about rushing to get these things done.  Most patients never need to go these lengths. Ceramic, glass and stainless steel cooking utensils and vessels will come clean and do not need to be replaced.  They can even be switched between mammal meat and non-mammal use on the fly provided they are well washed.  The only exception to this is fancier designs that have air spaces or nooks and crannies that cannot be reached for scrubbing, but only the most sensitive cases have reported needing to replace these.  Any kitchenware with visible "ghosts" or residues that won't come off should be replaced, avoid the temptation to just wrap them in foil since when heated the ghost can partially vaporize, seep out, and redeposit back on food. Wooden, plastic, and heavily scratched cooking equipment is highly suspect for retaining trace amounts of mammal and causing cross-contamination.  Heavy cleaning may be enough to eventually detox them, but if you are sensitive to cross contamination and are jumping back and forth between cooking mammal and non-mammal, it may be better to get a second designated set for exclusive non-mammal use. Cast iron pans can be a constant source of cross-contamination, but they don't need to be replaced.  Numerous AGS support group members have reported success in stripping a current pan down completely and then re-seasoning it for use as an exclusive mammal free pan.  It isn't possible to prevent cross-contamination when a seasoned pan is used for mammal and non-mammal uses. Grills are usually beyond saving and may need to be replaced if cross contamination reactions are an issue.  Many families keep 2 grills, one for alpha-gal free foods and the second for other family members.  Charcoal can introduce it's own set of issues and contaminants, so a propane grill is preferred.  Since grilling can release airborne alpha-gal, it's best to keep the mammal free grill upwind from the one used for mammal meats. Ovens that have previously been used with mammal meats may redeposit and cause cross contamination.  Most ovens can be safely used again for mammal free cooking once all visible residues have been removed and the self-cleaning cycle has been run, but occasionally the most sensitive cases of AGS end up needing a new oven.  This is usually only the case for extremely old oven models with decades of residue trapped in the airy spaces that temperature sensor wires and the like run through.  It may be possible in some of these cases to open the oven up for cleaning and find success that way.  Alternatively, some people prefer to get a small toaster oven for themselves and keep the main oven for mammal dishes made for the family.  Since the oven situation is so difficult to manage, it should be at the bottom of the list of things to try when working to reduce remaining reactions.

Conclusions

By selectively choosing the easiest adjustments for reducing alpha-gal exposure first, it is possible to minimise the impact it has on one's life, and taking it one step a time makes AGS more manageable even when the end goal is total avoidance.  What small adjustment gave you your biggest benefit?  What advice would you give to someone newly diagnosed with AGS?  Have your experiences differed from the ones we discuss here?  Tell us about it in the comments.