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 LevelsThe 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 FoundThere 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 CategoriesWhen 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 ExposureThe 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