Archive | Uncategorized RSS feed for this section

It’s Been a Crazy Week

7 Feb

Sometimes taking care of patients takes priority over my own self-care. I find myself up reading lab results at 11 p.m., and then waking at 5 a.m. to scroll through medical records for the day. Patient care doesn’t stop when I leave my practice at night; it follows me home and sometimes steals me away from time with family and friends. I knew this would be my life before I graduated medical school, and for the most part, I’m really happy to fill my time helping others. This week has been extra challenging. We’ve had a little outbreak of illness at work, and it has taken down 3 of my nurses and my office manager. With my physician assistant out on vacation to start the week, I’ve had one heck of a time keeping up with everything. On weeks like this, I just keep my head down, keep moving forward, and try to visualize my next vacation!

Back to self-care; I’ve definitely neglected my diet, exercise and sleep routine this week. I try not to let it show during clinic, buy my patient advocate pointed out to me that I’m definitely not my usual chipper self. Tonight I’ve decided to practice some good self-care. I’m going to make a healthy dinner, and I’ll try to really take my time and enjoy it. After, I might try and do some light reading, drink some hot tea, and leave the TV off. Maybe a little quiet evening at home will wrap this week up in a nice little bow.

So, do you practice self-care? Now more than ever, a little self-care in your daily or weekly routine can help you keep a positive outlook on life, and help you through your alpha-gal diagnosis. I’m going to share my quick dinner idea for tonight with you. Maybe you can have a healthy dinner along with me.

Easy Weeknight Healthy Dinner

Baked potato-I use the microwave to cook it, then I usually add my favorite salsa, salt, pepper and a squirt of lemon or lime; you could also use Italian dressing, vegan butter, turkey bacon crumbles, olives-you really can’t go wrong. When I’m feeling really adventurous, I’ll coat the potatoes in olive oil and kosher salt, heat it up in a cast iron pan (that has never seen beef or pork) until the skin starts to crisp just a bit, and then place the pan full of potatoes in the oven to bake. They are amazing this way.

Salad– I buy the pre-mixed, pre-washed lettuce. I add a vinegar based dressing because I’m unable to eat dairy. I like to add green onions, cucumber, mushrooms, boiled eggs, baked chicken, artichokes, and olives to my salad.

“Buttered” Bread-I like to use plant-based buttery spreads, add a bit of diced garlic, and salt. I use my toaster oven to crisp it up. My patient advocate, Michelle, has been raving about Kite Hill spread-it’s vegan and made of almonds, and she swears it’s very nearly cream cheese tasting. I plan on giving it a try next week with bagels.

 

Helpful Websites

29 Jan

Alpha Gal allergy can be an extra challenge, because unlike other illnesses that require a lifestyle change in order to get healthy, this syndrome forces the sufferer to go through immediate changes to their diet, instead of a gradual one. On top of that, eating something that you shouldn’t if you have high cholesterol or diabetes might not immediately or severely impact your life like it will for an Alpha Gal patient. That vigilance can be tiring, but it’s important for your ongoing health.

Having Alpha-Gal and also being a physician may give me a unique perspective on this subject, but it doesn’t really give me an advantage. I still have to be extra careful with my restaurant orders, and very vigilant that my cooking ingredients at home don’t trigger my symptoms. My staff can attest to my sensitiveness, as I’ve recently developed symptoms when someone in my office microwaves beef or pork for their lunch.

I wish that when I first developed this disease there was already a support group and resources in place to  help me navigate it, but I’m one of the first physicians to recognize and research this illness, and I developed symptoms before there was a name for the problem.

If you’re a recently diagnosed patient, you are a little more fortunate. So many people and organizations are on your side. More and more physicians are recognizing the symptoms of  this illness, and there are countless blogs, websites, and apps out there that can help you navigate your new healthier lifestyle. I’m going to list a few that I find helpful; I am not paid by any of these websites, and I do not endorse any of their agendas. I hope this helps someone who needs it.

Facebook *There are many Alpha Gal support groups on FB, such as Alpha Gal Arkansas, The Alpha Gal Kitchen, Alpha Gal Encouragers-NW Arkansas, NWA Food Allergy Family Support, Alpha Gal Support Non-Public, Camping with Alpha-Gal/MO, AR, KS, OK, Alpha Gal of NWA, The [NEW] Alpha Gal Support Group, and many others you can join according to your region.

PETA *I realize that suggesting PETA can be controversial, as they have their own agendas to forward that don’t necessarily align with my beliefs, but there are many great articles and lists of vegan products.

Devanutrition.com  *This website sells supplements and vitamins that are certified vegan. Very helpful for those that are wanting to take supplements but cannot verifiy that the vitamins sold OTC are safe.

Kirkman Labs   *This is another supplement website that has vegan options.

Barnivore.com  *Do you enjoy beer, wine, and spirits? Well, this website lists vegan and vegetarian safe drinks.

Cheese.com/vegetarian  *For those of you that can still tolerate dairy (I’m unfortunately not in this group) this is a good resource. Some cheeses are started/cultured in rennet, which is made from the stomach tissue of a calf. It’s important you know your cheese is safe, or if you have a reaction, don’t immediately discount cheese as the cause of your problem, even if you’ve tolerated it before.

Tickwarriors.com  *This is a website created by Jennifer Platt, PhD, who contracted a tick-borne illness in 2011. Her personal experience led her to start Tick Warriors, and on this site you can buy natural and environmentally friendly alternatives for personal defense against ticks, as well as sprays for your yard.

There are many more websites out there to help you navigate your new lifestyle. I hope that this list serves as a starting place for you. Again, I do not receive any compensation from the above mentioned sites, nor do I endorse any personal or political beliefs connected to them. I wish your good luck and health in your journey, and know that you have support.

Prevention

21 Jan

From the moment of your Alpha-Gal diagnosis going forward, you became your family and friends’ best advocate. Your own Alpha-Gal numbers can change for the worse if you don’t take personal precautions. Here is what the Mayo Clinic has to say about prevention:

  • Cover Up. When in wooded or grassy areas, wear shoes, long pants tucked into your socks, a long-sleeved shirt, a hat and gloves. Try to stick to trails and avoid walking through low bushes and long grass. Keep your dog on a leash.
  • Use insect repellants. Apply insect repellent with a 20 percent or higher concentration of DEET to your skin. Parents should apply repellent to their children, avoiding their hands, eyes and mouths. Keep in mind that chemical repellents can be toxic, so follow directions carefully. Apply products with permethrin to clothing or buy pre-treated clothing.
  • Do your best to tick-proof  your yard. Clear brush and leaves where ticks live. Keep woodpiles in sunny areas.
  • Check yourself, your children and your pets for ticks. Be especially vigilant after spending time in wooded or grassy areas.
  • It’s helpful to shower as soon as you come indoors. Ticks often remain on your skin for hours before attaching themselves. Showering and using a washcloth might remove unattached ticks.
  • Remove a tick as soon as possible with tweezers. Gently grasp the tick near its head or mouth. Don’t squeeze or crush the tick, but pull carefully and steadily. Once you’ve removed the entire tick, dispose of it and apply antiseptic to the bite area.

With Alpha-Gal, avoidance can cause your numbers to decrease, and in time (many years) it may be possible to recover from this, making it an utmost priority to avoid reinfection by ticks.

Quick Dinner Idea

16 Jan

When I’m in a hurry but I want something homemade, this is my go-to dish. You can add chicken or salmon if you like, or even olives and capers. Make it your own. Enjoy!

Easy Lemon Pasta

Cook angel hair pasta as directed, drain. Add back to pan.

Add fresh lemon juice, olive oil, and preferred seasonings to taste.

Viola! Quick, easy, and delicious.

 

The Basics of Alpha Gal: Foods to Avoid

9 Jan

Knowing what to avoid after an alpha gal diagnosis is key to living you best life. Here is a basic list of foods to avoid:

  • Beef
  • Beef stock or broth (caution with chicken broth; (“natural flavoring” can be mammal sourced)
  • Bison
  • Buffalo
  • Brown gravy (made with beef broth)
  • Gelatin-when made from byproducts of meat and leather industry
  • Certain vaccines (see Children’s Hospital of Philadelphia educational material)
  • Gummy Candies (unless VEGAN)
  • Some ice cream and yogurt
  • Gelatin Desserts
  • Marshmallows
  • Altoids brand mints
  • Gelatin Capsules (vitamins, supplements, and RX meds in gelatin capsules)
  • Medications that contain pre-gelatinized starch
  • Goat
  • Lamb
  • Lard (some refried beans contain lard)
  • Pork
  • Venison
  • MAGNESIUM STEARATE in pills
  • tic-tacs *some have pork derivatives in them

Avoid contact in a few extreme cases:

  • Lanolin (sheep)
  • Leather (shoes, couches, coats)
  • pets/animal contact/inhalation can trigger cough

ALLOWED:

  • Chicken
  • Turkey
  • other birds
  • Fish

 

I’m Back!

9 Jan

Wow, six years since my last posting. I have to apologize. Life has happened since then!As you may know, I’m a physician living in Northwest Arkansas, and although my deep passion is researching and learning more about alpha-gal syndrome, I treat many people on a daily basis with other intricately complicated diagnoses. My life is hectic and my days are full, but everyday is a gift.

I personally suffer from alpha-gal. I carry a food allergy card that I give to my server at restaurants, and I wear a medical alert bracelet to let first responders know I have an anaphylactic allergy to red meat. I keep an epi-pen close at hand. Everyday life involves extra steps; avoiding meat products in my medicines, my foods, and even my beauty regimen.  It can be daunting, but I’ve had this diagnosis for many years, and I believe I was actually suffering from alpha-gal much sooner than I was diagnosed; before we in America knew what alpha-gal was.

Alpha-gal syndrome is an acquired mammalian meat allergy that is usually caused by a tick bite. In America, the Lone Star tick is the culprit. Because the allergy symptoms are usually delayed for several hours, the direct link to the allergy can be hard to determine at first, unlike the almost immediate reaction an allergic person may have to shellfish or peanuts, for example.

If you think you have alpha gal syndrome, please consult a physician. There is a test that can be done to determine if you have alpha-gal syndrome. A good start is to see an allergist. There you can be tested for beef and pork, and positive tests may warrant getting a test for alpha-gal. This is not a full-proof diagnostic tool, because it can take months to years for your test to come up as positive, even though your body is showing all the classic symptoms.

I try my best not to let my alpha-gal diagnosis define me. I am so much more than that-I’m a woman, a mother, a friend, a daughter, a physician, and an advocate. I have a multitude to be thankful for, that I would be doing a disservice to myself if I chose to let my illness overcome my personal happiness. I hope that this blog is insightful and helpful; I’m going to do my best this upcoming year to stay up-to-date with this forum. My patient advocate, Michelle, has been working hard surfing the net to find the best tips for enjoying your best life living with alpha-gal, and she’ll be updating the posts often with helpful tips.

The Alpha-gal

26 Aug

Are you allergic to beef and pork?  You may be allergic to gelatin too.

It was just a cheese burger, but Mary awoke 4 hours later, with severe itching.  She went to the bathroom, and took a shower, but within minutes she was dizzy, and threw up.  She ended up on the bathroom floor unconscious.  Her husband called an ambulance, and she had several doses of epinephrine (adrenaline) and steroids before she improved.  Allergic reactions to beef and pork were described over 20 years ago in Australia.  They thought the allergy was related to tick bites from ticks on bandicoots (they look like a mouse).  In Bentonville, Arkansas, a patient died from an immediate reaction to a cancer medication, made from an antibody made from a mammal.  Dr. Tina Hatley Merritt in Arkansas and Dr. Thomas Platts-Mills in Virginia developed a test to evaluate these allergic reactions.  Researchers at Imclone determined the reaction to the cancer medication was from an allergy to a sugar-protein called galactose-alpha-1,3-galactose, abbreviated Alpha-gal.  A landmark article was published in the New England Journal of Medicine, describing this new type of allergic reaction to a sugar plus protein.

A short time later, Dr. Platts-Mills was bitten by several baby seed ticks in Virginia, and had an increase in his IgE (allergy antibody) to Alpha-gal and developed an allergy to beef, pork, and lamb.  Dr. Barrett Lewis in Missouri also noticed an increase in beef and pork allergy in his area.  Then Dr. Platts-Mills and Dr. Scott Commins at the University of Virginia published an article about red meat allergy related to Alpha-gal, and how this can be caused by tick bites, and mostly occur in the mid-south.  The symptoms range from hives and diarrhea to life-threatening allergic reactions with breathing problems and a drop in blood pressure.  The other unique finding is that these reactions can be delayed, up to 6 hours after eating red meat.

People who have allergic symptoms to red meat, may also be allergic to milk and gelatin.  Gelatin that is derived from mammal products can cause similar allergic symptoms.  The symptoms include rashes if gelatin is in a soap or lotion.  If in a medication capsule, can cause stomach aches and even severe allergic reaction.  Gelatin is in several vaccines, and could cause immediate reactions (See Children’s Hospital of Philadelphia Educational Material).  Glycerin may also be derived from lard, but may be from plant sources as well.

All mammals except humans and apes have Alpha-gal.  (Humans do express Alpha-gal in the trophoblast phase of development).  Exposure to pets and farm animals may increase allergy to Alpha-gal.  In a study in Arkansas, all of the patients with allergy to Alpha-gal had previous tick bites, and most of them had exposure to pets.  There is a test available to measure IgE to Alpha-gal.  It is performed by ViroCor-IBT laboratory in Lee Summit, Missouri.  An allergist can also do skin testing for beef, pork, and milk.  The treatment is strict avoidance, but it appears that after 3-4 years of avoidance, the allergy decreases.

Tina Hatley Merritt, MD

The Allergy & Asthma Clinic of Northwest Arkansas

Email: Allergy@safetysend.com
Updated 8/25/2012

Alpha-gal allergy (Mammal glycoprotein)

Avoid:

Beef

Beef stock or broth

Bison

Buffalo

Brown gravy (made from beef broth)

Gelatin-when made from byproducts of the meat and leather industry

Certain vaccines (See Children’s Hospital of Philadelphia educational material)

Gummy candies

Some ice cream and yogurt

Gelatin dessert

Marshmallows

Altoids brand mints

Gelatin capsules

Medications that contain pre-gelatinized starch

Goat

Lamb

Lard (some refried beans contain lard)

Pork

Venison (deer)

Avoid contact in a few extreme cases:

Lanolin (sheep)

Sometimes leather (shoes, couches)

Contact with pets/animals-inhaled can trigger cough

Allowed:

Chicken, turkey and fish are not mammals, and do not contain Alpha-gal.