Management

A Guide to the Management of Alpha-gal Syndrome

Update

When this website was created, there wasn’t an up-to-date, comprehensive guide to the diagnosis and management of alpha-gal syndrome. Now two have been published, both written by leading experts. If you are a healthcare provider, or even a patient with a more than casual interest in alpha-gal syndrome, you will want to read these papers. Although this page draws heavily from both publications, it is not a substitute for them.

Commins SP. Diagnosis & management of alpha-gal syndrome: lessons from 2,500 patients. Expert Review of Clinical Immunology. 2020 Jul 9:1-1.
Platts-Mills TA, Li RC, Keshavarz B, Smith AR, Wilson JM. Diagnosis and management of patients with the α-Gal syndrome. The Journal of Allergy and Clinical Immunology: In Practice. 2020 Jan 1;8(1):15-23.

Is There a Cure for Alpha-gal Syndrome?

Currently, there is no cure or treatment for alpha-gal syndrome.
People with AGS need to avoid foods and other products that contain alpha-gal in order to prevent allergic reactions.
Exactly which foods and products you need to avoid depends on your individual tolerance level.
Since additional tick bites can make AGS allergic reactions worse, avoiding the ticks that can trigger AGS, like the Lone Star Tick, may help keep your reactions from getting worse.
If you avoid additional tick bites, with time, your reactions may become less severe or even go into remission, but there is no guarantee of this.

Can Alpha-gal Syndrome Be Prevented?

Alpha-gal syndrome can be prevented by avoiding tick bites. In the U.S., you need to avoid the bite of the Lone Star Tick and possibly other species of ticks.
It is not enough to do tick checks and remove ticks promptly. Once the tick has bitten you and has ejected its saliva into the bite, you are at risk of developing AGS.
If a tick does bite you, it is important to remove it correctly. If you remove it the wrong way, it may eject more of its saliva into the bite. This could increase your chances of developing AGS and other tick-borne illnesses.
More information about ticks and how to protect yourself from them is available in the Ticks section of this website.

Click here to learn about research to find a cure!

What about My Symptoms? Can They Be Managed?

Yes, the symptoms of AGS can be managed, as with any other allergy.
Because many people with AGS experience life-threatening symptoms, if you think you might have AGS, you need to see a doctor as soon as possible.
Even if you don’t think you have AGS, if you are experiencing allergic reactions–especially anaphylaxis– you need to see a doctor.
Your doctor can advise you about medications and strategies for managing your symptoms.
Your doctor may recommend antihistamines, steroids, or other medications.
Most, or possibly all, people with AGS need an epinephrine autoinjector, like an epipen.
If your doctor gives you an epinephrine autoinjector, it is very important that you learn how to use it, follow the directions your doctor gives you, and ask your doctor for a rescue plan.

“I was bitten in 2000. It has not “gone away” but my reactions are nowhere near what they were in 2000!”
—Tracy Gaskins

“People tell me the same 3-5 years thing. Okay, but seriously, I’m going on probably at least 12–15.”
—Crystal J. Norton

All the information on alphagalinformation.org is provided in good faith, but we, the creators and authors of the Alpha-gal Information website offer no representation or warranty, explicit or implied, of the accuracy, adequacy, validity, reliability, availability, or completeness of any information on this site. Under no circumstances should we have any liability for any loss or damage incurred by you as a result of relying on information provided here. We are not physicians or medical professionals, researchers, or experts of any kind. Information provided in this website may contain errors and should be confirmed by a physician. Information provided here is not medical advice. It should not be relied upon for decisions about diagnosis, treatment, diet, food choice, nutrition, or any other health or medical decisions. For advice about health or medical decisions including, but not limited to, diagnosis, treatment, diet, and health care consult a physician.
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DISCLAIMER:

All the information on alphagalinformation.org (“here” “this site”) is provided in good faith, but we, the creators and authors of the alphagalinformation.org website (“we” “us” or “our”) offer no representation or warranty, explicit or implied, of the accuracy, adequacy, validity, reliability, availability, or completeness of any information on this site. Under no circumstances should we have any liability for any loss or damage incurred by you as a result of relying on information provided here. The user assumes all risk of using information provided here.

We are not physicians or medical professionals, medical or scientific researchers, or experts of any kind. We are laymen with alpha-gal syndrome with no medical or scientific expertise. The information provided by us on alphagalinformation.org is provided for general informational purposes only. It may contain errors and should be confirmed by a physician. Information provided here is not medical advice and is not a substitute for the advice of a physician or other medical professional. It should not be relied upon for decisions about diagnosis, treatment, diet, food choice, nutrition, or any other health or medical decisions. For advice about making medical and health-related decisions, consult a physician.

Alphagalinformation.org may contain links to other websites, embedded information from other websites, links to apps, or other sources of information belonging to or originating with third parties. We do not investigate, monitor, or evaluate information provided by external links or embedded third party features for accuracy, adequacy, validity, reliability, availability, or completeness. We do not warrant, endorse, or guarantee the accuracy of such information. We will not be a party to or in any way responsible for monitoring any transaction between you and any third-party provider of products, services, or information. Under no circumstances should we have any liability for any loss or damage incurred by you as a result of relying on third party information provided here. The user assumes all risk of using information provided here.

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