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Meeting held on alpha-gal

A meeting about alpha-gal, a widely-spreading syndrome in the Heart of Virginia, filled the lobby of Centra Southside Community Hospital Thursday. Centra’s Gastroenterologist Dr. Bikram Bal provided information on the condition and took questions from audience members.

Alpha-gal is a condition believed to originate from lone star tick bites that create an allergic reaction to beef, pork, deer and dairy among other mammalian meats and byproducts. A lone star tick has a distinct white patch on its back.

The tick can transmit an antibody that causes the individual to become resistant to galactose-alpha-1,3-galactose (alpha-gal), a oligosaccharide, or molecule present in mammalian meat.

Reactions vary, and can range from hives, swelling of the tongue, abdominal pain, vomiting, bloating, diarrhea and even anaphylactic reactions, becoming unable to breathe, that can be fatal if untreated.

Bal estimates that his office diagnoses five to seven people with alpha-gal each week. This doesn’t include other doctors at the hospital or Centra Medical Group.

Bal described alpha-gal during the first 15 minutes of the meeting, its cause, symptoms and how it is diagnosed, which is often through a blood test.

For the rest of the meeting, he took questions from members of the audience. Others with alpha-gal in the audience also provided answers and suggestions.

Question included how long a tick would need to be on a person before the person contracts alpha-gal and if a vaccine is in the works to combat or treat alpha-gal.

Bal said a tick would need to be on a person for some time before the person contracts alpha-gal but that he didn’t have further information.

He said it’s likely that future, potential treatment would not be a vaccine, which are used for viruses, and alpha-gal is not a virus. He said there is the possibility of desensitization, which could desensitize people from other allergies. For now, he said people would need to protect themselves against ticks.

“The only prevention for alpha-gal is to prevent tick bites,” Bal said.

A few speakers noted that prior to their symptoms, they had been bitten by chiggers rather than by ticks.

One person in the audience said that tick larva may also transmit alpha-gal, and may look similar to chiggers.

Bal said there may be other carriers of alpha-gal.

Bal said developing other allergies through alpha-gal is possible and recommended allergy testing.

L.D. Phaup noted that cosmetics, including lipsticks and other kinds of makeup, can cause allergic reaction due to mammalian ingredients. Others have said there are gelatin-based or meat-byproduct coatings on medication and vitamins that can cause allergic reactions.

One audience member recommended vegetable-based capsules.

One person asked about dairy products. Bal said there are those with alpha-gal who can have reactions to dairy products, though not every person with alpha-gal reacts to dairy.

Bal said he wouldn’t recommend that those with anaphylactic reactions test foods to see how they would react, as anaphylactic reactions can be fatal.

A few audience members spoke about epinephrine pens, noting their high costs and that insurance companies sometimes do not cover the cost for them.

One person recommended asking a doctor for “epinephrine” rather than “epi-pen,” as “epi-pens” are a brand-name medication, and “epinephrine” is a generic medication that is a little less expensive.

Bal said he does not recommend people using epinephrine that has expired.

One audience member asked how those with alpha-gal can alert medical professionals or others that they have alpha-gal. Bal recommended telling their doctors all of their allergies.

One speaker noted that her husband has a bovine aortic valve. She said he has been having unexplainable symptoms and got diagnosed with alpha-gal after surgery, and wondered if the bovine valve could be affecting him.

Bal said there have been one or two case reports that examine the possibility of reactions from bovine implants.

One person asked about resources that can help identify mammalian products.

Farmville resident Deidre Westerhoff recommended a series of websites that can help people find products without beef or pork, called “Everything but the moo,” or “Everything but the oink.” Westerhoff has a website she created on alpha-gal, called alphagalatoz.com.

Others also recommended Facebook groups for those with alpha-gal.

Audrey Sullivan, owner of Red Door 104 in Farmville, is planning a support group at Red Door for those diagnosed with alpha-gal and encouraged people to reach out. The meetings will be held the last Wednesday of each month, beginning Wednesday, July 31, at 6:15 p.m. To learn more, call (434) 392-1405.

Sidney Pollard said he drove all the way from Portsmouth to attend the meeting. Like the Farmville area, he said Portsmouth is seeing a rising number of alpha-gal cases.

“There’s more and more,” Pollard said about the alpha-gal cases.