Sep 18, 2011

Gluten Free Brand Name Products and Chain Restaurants

There are many brands that only make gluten free products, but sometimes those can be hard to find or more expensive than "regular" brand name products.  Here are some of the more common brand name products you may have in your local food store, that just happen to be gluten free.  Just because a brand is mentioned (i.e., Hershey's) doesn't mean that ALL Hershey's products are gluten free.  Check the links for the individual product lists.

All Boar's Head meats, cheeses and condiments are gluten free!

General Mills is one of the world's largest food companies and they have been a leader in recognizing the needs of gluten free consumers.  They even have a website for their broad array of gluten free products.  There are lots of recipes and meal ideas on the site and if you sign up for their e-mail list, they will e-mail your coupons for their gluten free foods:  
Some of the General Mills brands that have gluten free products are:
Betty Crocker Frosting
Betty Crocker Gluten Free Cake Mixes
Bisquick (they came up with a gluten free Bisquick - the regular Bisquick is NOT gluten free)
Chex cereals
Green Giant frozen veggies
Fruit by the Foot, Gushers, Fruit Roll Ups & Fruit Shapes
Progresso Soups & Broths
San-J Terryaki, Tamari and Soy Sauces

Many of the Hormel brands have gluten free products (Chi-Chi's, Hormel, Jenny-O)

Some of the Nestle brands have a few gluten free products (Carnation, Toll House, Nescafe, Wonka, Nestea brands)

Many Heinz brands have gluten free products too (Heinz, Smart Ones, Costco and Sam's Club products, Jack Daniels BBQ sauce)

Many of the Campbell's brands have gluten free products (Campbell's, Swanson, V-8, Prego, Pace's) 

Many Del Monte products are gluten free (FYI... creamed corn is NOT gluten free)

Some of the College Inn soup flavors are gluten free

Many of the Edy's Ice Cream and fruit bar products are gluten free 

Ben & Jerry's has several gluten free flavor

All Kozy Shack puddings, flans and gels are gluten free.

Frito Lay has many gluten free products

Sweetheart Candies by Necco (those little valentine hearts with words on them)

Here's an extensive list of gluten free candies (Hershey's, Tootsie Rolls, Starburst, etc.)

There are many more gluten free products in your regular foodstore, including all fresh fruits, vegetables,  raw un-marinated meats, eggs and plain dairy products.

Gluten Free Options For Dining Out
Even if the individual food product is gluten free, you still have to be be careful about cross-contamination in the back of the kitchen or with shared ice cream scoops.  This is more so for people who have true Celiac Disease, for which there is no "safe" amount of gluten they can consume.  People like me, who don't have Celiac but are just very sensitive to gluten, can probably get away with a little cross contamination now and then without getting sick.  Just ask the server if the kitchen is able to cook the food in separate pots and pans or if they can use cleaned ice cream scoops.  Fried foods are often fried in the same oil as foods with gluten, so be extra careful with ordering those items.  Here are some of the chain restaurants that have gluten free menus:

Ben & Jerry's
The Outback
Boston Market
Ground Round
P.F. Chang's
Ruby Tuesday's
Olive Garden

Gluten Free Food Shopping
Regular foodstores are now carrying more gluten free products than ever!  In the past year, all of the foodstores we use have started to have a gluten free section or aisle, which makes it easier to find the gluten free specialty products.  If your local foodstore doesn't have a gluten free section, ask them to start one.  They will respond if enough consumers as for gluten free items.

Trader Joe's has a long list of gluten free items is sells, and any of the trader Joe's branded products that are gluten free have a little "g" logo in a square to signify if they are gluten free.

Whole Foods - each store has its own list of gluten free products.  Here's where you can look up your local store and here's the gluten free product list from my local store so you can see the brands listed.  Many Whole Foods stores also have a green tag on the shelf under gluten free items, although I noticed that many items that were gluten free did not have a tag in the two Whole Foods stores I have been to recently.

Safeway also uses tags on store shelves to identify gluten free items.  The tags are reddish brown and say "gluten free" on items the manufacturer has identified as being gluten free.  I do not shop in Safeway, so I'm not sure if the stores really keep these tags updated and accurate, but it's worth checking out if you have a Safeway near you.

Shop Rite maintains a list of gluten free products it sells.

Waldbaum's has a good website explaining the basics of Celiac Disease and gluten and they carry many popular gluten free specialty brands like Glutino and Schars.

Stop and Shop has a long list of it's own brand products that are gluten free, as well as it's Nature's Promise product line.  The Stop and Shop stores near my house usually have a large section of gluten free specialty foods.

Of course, if there is a gluten free product you are looking for and they don't have it in your local foodstore, you can always get it online from one of the many gluten free websites.

Sep 16, 2011

What I wish someone told me the day I was diagnosed with POTS...

If you or a loved one are newly diagnosed with POTS, you are probably not sure what to do next.  You've probably already been through so much, just trying to get a diagnosis for all those wacky symptoms you were having.  Here's what I wish someone had told me the day I was diagnosed with POTS.

First and foremost, you are not alone.  There are an estimated 500,000 people diagnosed with POTS in the United States, and many others around the world.  POTS researchers estimate that another 500,000 people in the US have POTS and have either been misdiagnosed or not diagnosed at all.

You may find comfort in talking to other POTS patients.  There are several POTS related support groups on Facebook (POTSRecovery, POTS, NY POTSies, etc.).  I have learned so much about POTS from talking to other patients on these groups.  The groups are very supportive and you can ask whatever questions you want, no matter how awkward or sensitive an issue.  If you are having a really weird symptom, chances are, lots of other POTSies are having it too.  If you can't find these groups on Facebook, it's because some of them are hidden to protect the privacy of the members, since not every member is comfortable letting everyone on Facebook know they have POTS.  The private groups require an existing member to add you to the group.  You can leave me a comment below with your e-mail address, and I will get in touch with you if you'd like me to add you to  any of these groups.  I will not publish your e-mail address on this blog or use it for any other purpose.

There are also other POTS blogs, like The Dysautonomiacs (a bunch of funny teenage girls), POTS (an adult woman's story of POTS recovery) and so many more.  There are also POTS patient videos on You Tube and many of those patients have their own blogs too.

Some doctors think all POTS patients just need more fluids and high doses of salt.  That may be true for many POTS patients, but not all, and for some, this can do more harm than good.  The main "sub-types" of POTS are Partial Dysautonomic POTS (mostly involving some dysfunction or damage to the autonomic nerves and normal to low blood pressure) and Hyper POTS (mostly involving an overproduction of adrenaline like chemicals and high blood pressure).  Some other types that have been named include post-viral POTS, and hypovolemic POTS (low blood volume).  Here are two journal articles that discuss the different types of POTS.  You may want to bring this to your doctor and ask them to help identify your type of POTS so you can best target your treatment plan.  Hyper POTS is treated very different from the other types, and giving large doses of salt to a Hyper POTS patient who already has high blood pressure can be dangerous.

POTS patients from all over the world complain that they can't find a doctor who is really a specialist in POTS or autonomic issues.  There are some good ones out there, but certainly not enough of them to treat all 500,000 people in the U.S. diagnosed with POTS.  Probably the best POTS doctors in the country are at the major autonomic research centers - Vanderbilt University's Autonomic Dysfunction Center in Baltimore, Maryland; Cleveland Clinic in Cleveland, Ohio; and Mayo Clinic in Rochester, Minnesota. Dr. Blair Grubb in Toledo, Ohio and Dr. Chemlinsky in Cleveland, Ohio have a loyal following of POTS patients, as do Dr. Mark Pecker and Dr. Louis Weimer in New York City.  To find a doctor near you who has a clue about POTS, you may want to check out the DINET physician listing, or the American Autonomic Society member listing.  These are not always updated and just because a doctor is listed on one of these sites is not a guarantee that they will be helpful in treating your POTS.

I have seen several self professed POTS experts, and to be honest, they didn't know much more about POTS than I did.  I have read every journal article I could find on POTS and other forms of dysautonomia.  I have read everything I can about the various drugs used to treat POTS.  I have made myself a semi-expert on the autonomic nervous system.  I have exhaustively researched all of the known causes of POTS.  I have even done some of my own research, however unscientific, by tracking my own bodies response to various treatments, dietary changes and fluid volume changes.  Don't let your doctors tell you to stop researching on the internet, or to stop asking questions.  If it wasn't for my own research on the internet, I would not have been diagnosed with POTS.  If it wasn't for my own persistence in finding the underlying cause of my POTS symptoms, I would not have been diagnosed with Sjogren's Syndrome - the autoimmune disease that is causing my POTS symptoms.  Just because you don't have a fancy medical degree, doesn't mean you can't understand this stuff.  No one knows what's going on with your body more than you do, so you should try to become your own expert.

I'm not saying don't go to the doctor, I'm just saying don't just take what your doctor says at face value, since chances are he/she is not a POTS expert.

If you are bedridden from POTS, you are probably thinking, "yeah right, I can't even get up to pee, how am I going to exercise?"  Don't think of exercise like a Buns of Steel workout video. Think of exercise as movement and activities that cause you to engage your muscles and bones.  If you are bedridden, here are some exercise tips that may help you:

(1) keep those joints moving so you don't get as many aches and pains from stiffness and lack of use

(2) stretch, stretch and stretch again, gently - you need to avoid getting stiff, because that only makes your aches and pains worse.  Plus, stretching increases blood flow to areas that are stagnant if you have been laying down too much.

(3) get your legs and core as strong as you can - you can start by doing leg lifts while laying down on your side, then laying on your back and writing your name or the alphabet with your toes in the air about 1 foot above the bed/couch.  Doing imaginary bicycle kicks in bed, and eventually moving up to a real reclined/recumbent bicycle.  If you can kneel on your knees and put your arms down in front of your knees, and put your leg straight behind you (planks) that is really good for your butt and core and thighs. Try wearing 2 lb. or more leg weights on each leg, and then doing leg lifts.

(4) retrain your body to be upright - if you are starting flat on your back and are really bedridden, try propping your head up with pillow for a few hours a day, then try sitting up for a few minutes at a time, and longer and longer until you can sit up almost all day.  Then try standing for a few minutes at a time, until you can stand longer and longer - and something important to know - it's usually harder for POTSies to stand still than to walk or keep their legs moving while standing, so try marching in place next to you bed, so you can lay back down when it becomes to much.  I used to watch TV all day, since I was stuck in bed.  When I started to retrain my body to be upright and walk again, I would stand up and try to walk baby steps during each commercial break.  That would give me severe tachycardia and shortness of breath and dizziness, so when my show came back on I would sit down again, and by the time I recovered form the last bout of tachycardia, there was another commercial and I had to get up again.  I know all of this sounds silly to those of you who are healthy and not bedridden, but you have no idea how hard it is to regain your ability to stand upright until you have lost that ability.

(5) once you have moved out of being completely bedridden and stiff, the best exercises to help with POTS are those that strengthen your lower legs, and those that give you a good cardio workout without setting off your POTS symptoms. For most patients, the exercises that can help with this are recumbent bicycling, rowing machines, swimming and weight training that can be done sitting or laying down.  Yoga can help strengthen and energize you, and there are plenty of positions that include sitting or laying down, or positions that can be modified to your abilities.

I plan to write a full blog post on exercises that have helped my POTS symptoms, including those that helped me transition from being bedridden for almost a year to able to walk again and spend am occasional day at the beach with my friends.

Some POTS patients have very high BP, but most have bouts of low blood pressure or nearly constant low blood pressure.  This depends on the type of POTS you have, but most people have the Partial Dysautonomic type of POTS that is associated with normal to low BP.   If you can increase your blood pressure to a healthy level, you may notice less tachycardia, less dizziness, less shortness of breath - so this is worth a try:

1) Try to drink and/or eat 2-3 liters of water per day.  A liter is 2 regular sized Poland Spring bottles for those of you who don't use metric.  You can get this fluid from drinking water, juice, milk, decaf tea, decaf coffee, soup, sauces, watery fruits like melon, wet veggies like steamed spinach and mashed cauliflower, etc.  Keep track for a few weeks until you have gotten used to consuming that much per day.  It is not always easy, especially if you have GI and swallowing problems, as many POTSies do.

2) Get 8-10 grams of sodium per day.  That's 8,000-10,000 milligrams of sodium.  Not 10 grams of salt (sodium chloride), but 10 grams of sodium.  Since you can't eat raw sodium (it explodes in air!) you will be eating salt and sodium that is contain in foods.  I prefer sea salt, because it has lots of trace minerals and because table salt has added iodine which gives me hives.  High salt foods/drinks include pickle juice, soy sauce, terriyaki sauce, chicken/veggie broth, cheese, potato chips, pretzels, etc.  At first, you may think your food tastes gross with this much salt in it, but your mouth will get used to it and after awhile it won't taste as salty to you anymore.  In fact, when I eat foods without salt, like salad, I start thinking... hmmm, would this taste good with salt on it?  Usually the answer is YES!  Sea salt on lettuce or arugula is delicious.  Salt is also good on chocolate dipped strawberries, brownies, and anything sweet.  Salt on watermelon - yum!  A wedge of cheddar cheese pressed into crunchy sea salt is great too.  I even threw a little dash of salt on my soy milk - not enough to taste it, but just enough to accent the sweetness of the soy.  Salt opens up your tastebuds, which is why it makes most foods taste better.  That's why junk food is loaded with salt - it doesn't actually taste good until they load it up with salt.

3) Get your self a pair of full length medical compression pantyhose.  They have these for men and women.  If you get a good brand, they are comfortable.  I prefer Jobst Opaque because they are the softest and seem to last longer than the sheerer types.  They come in beige, white, black and sometimes you can find colors.  You probably want at least 20-30 mmHg of compression if you are trying to increase your blood pressure and prevent blood from pooling in your legs.  If you're legs turn red when you stand up and sometimes hurt in your calves from standing, you will really like compression stockings, because they prevent that from happening.  I wear mine from the moment I get out of bed in the morning, to the moment I go to bed at night.  On days when I skip them, I can really feel the difference.  A tip I learned from another POTS patient, you can cut out the cotton crotch area, without cutting the seams, to give your lady parts some fresh air.  Some people who wear them all the time get yeast infections, and cutting out the crotch prevents that.

4) Exercise increases blood volume, which increases blood pressure.  See exercise tips above.

5) Increasing the head of your bed can increase blood volume and helps minimize acid reflux, which many POTSies get.  Put cinder blocks, bricks or some large books under the legs at the top of your bed.  The blocks should be 6-8 inches high, at least.  When laying down, your hips should be above your feet, and your head should be above you hips.

6) If you feel a faint coming on, pump your fists Jersey Shore style, to engage as many arm and chest muscles as possible.  Also, you can flex and contract your lower leg muscles for a quick BP boost as well.  There are certain positions called "counter maneuvers" to prevent low blood pressure attacks.  Google it and watch some videos of it on YouTube.

7) Try going gluten free and/or dairy free.  Many, many, many dysautonomia patients have problems with gluten.  Some have Celiac Disease, but many others test negative for Celiac but still feel much healthier when they stop eating gluten.  Do no be intimated.  It is not hard to try and it doesn't have to be expensive.  Give it a month or two before you decide if it's helping or not.  There are many websites and books about eating gluten free, and I have another post on the POTS Grrl blog about it.  Many people respond the same way to dairy, so try going dairy free for a few weeks to see if that helps.

It probably took you years to get diagnosed with POTS, and your doctors probably told you it was "idiopathic" or of an unknown origin/cause.  Sometimes it is of an unknown cause, but is wrong for doctor's to label POTS as idiopathic until you have been checked out very thoroughly for every KNOWN cause of POTS - and there are literally hundreds of known causes of POTS.  It is important to try to identify the cause, because then you can tailor the treatment plan to the underlying cause - and certain causes are lifelong diseases that can cause damage mush worse than POTS, so the sooner you identify one of those lifelong disease, the better chance you have to prevent even more long term damage.  This is where becoming your own expert comes in really handy.

For example, I was tested for SS-A and SS-B antibodies, which are associated with Sjogren's Syndrome, and autoimmune disease that can damage your nerves and cause POTS.  When those blood tests came back negative, my doctor told me I didn't have Sjogren's.  They ran a few other tests and when everything came back normal, they said my POTS was "idiopathic." A year later, I found out that only 40% of people who have Sjogren's actually test positive for the SS-A or SS-B antibodies, and that a lip biopsy is considered the definitive Sjogren's test.  I had a lip biopsy, and sure enough, I did have Sjogren's.  If you can, go see the best POTS doctors in the world.  It's probably a trip to Vanderbilt, or Mayo or Cleveland, but for many POTS patients, it has resulted in life changing information pertaining to their diagnosis.

Also, keep in mind that POTS itself is not a disease.  It's just a list of symptoms that commonly appear together.  There is a problem with your autonomic nervous system - maybe some of your autonomic nerves have actually died off. There is always a cause for this.  Maybe you had a viral infection or Lyme Disease, maybe you have a severe vitamin deficiency or an accumulation of heavy metals in your body, maybe you have an autoimmine disease, maybe you had a trauma to your head or neck.  Nerves just don't spontaneously combust.  It's just a matter of your doctors and you working really hard to figure it out.  Modern medicine does have it's limits, so not everyone will figure out what is causing their POTS, but it is sure worth a 110% try if you are as sick as most POTS patients.

If you can think of other things you wish someone told you when you first found out you had POTS, please feel free to share it in a comment below.

Sep 5, 2011

What is Sjogren's Syndrome and how can it cause POTS?

Last month I was diagnosed with Sjogren's Syndrome by Cleveland Clinic.  I was relieved to finally know what was making me so sick.  My diagnosis breathed new hope into me, because now that we know what is going on, maybe we can treat it and reverse it.  I announced my diagnosis to friends and family with phone calls and Facebook posts, and lots of them asked me questions about Sjogren's and some said, "[s]o does that mean you don't have POTS?" Unfortunately, no, I still have POTS.   Sjogren's, as I will explain below, is causing my POTS - but if we can treat my Sjogren's, maybe we can improve my POTS symptoms.

A few weeks after I announced my diagnosis to the world via Facebook, superstar tennis pro Venus Williams, age 31, announced to the world via press release that she was recently diagnosed with Sjogren's Syndrome, and would have to withdraw from the U.S. Open tennis tournament.  I am sad for Venus, because she is such an amazing woman and wonderful to watch on the court.  However, I am glad she was brave enough to share her story with the world.  Sjogren's is one of those diseases that millions of people have, but the general public for the most part has never heard of it.  Venus is the first celebrity to tell the world she has Sjogren's (unless you count the woman who played Erin on the Walton's - dating myself here!) and this of course has all of the press talking about Sjogren's. 

Venus's diagnosis and having to pull out of the tournament is shocking to many people, because as a professional athlete, she is in peak physical condition and is by no means wimp or whiner when it comes to aches and pains.  I think this should help explain to those who are not familiar with Sjogren's, how much this disease can really debilitate someone and impact every aspect of their life. If Sjogren's is kicking Venus Williams in the arse and making her feel sick all the time, imagine what it is doing to someone who isn't in peak physical form and who doesn't have access to the best doctors and medicine money can buy.

You may read a Sjogren's related website or an article in the newspaper about Venus talking about Sjogren's patients having dry eyes and dry mouth.  While dry eyes and dry mouth are a distinguishing feature of Sjogren's that help doctors differentiate it from other diseases, the dry eyes and dry mouth are just the tip of the iceberg.  I think most Sjogren's patients would be happy to just have dry eyes and dry mouth - most patients have many other symptoms that are much more serious than dry eyes and dry mouth.  Also, the dry eyes that accompany Sjogren's can sometimes lead to severe ulceration of the eye, infection, and eventually blindness.  The dry mouth can lead to severe canker sores - sometimes 5 or more in the mouth at all times - which can make eating painful.  The dry mouth can also lead to digestive problems, because saliva is essential for proper digestion.  Dry mouth can also lead to choking on food, trouble swallowing, increased lung infections from inhaling ones food (coupled with dry lungs caused by Sjogren's), tons of cavities and dental infections (even if you brush and floss all the time), and increased sensitivity/allergic responses to many foods.  So even if dry eyes and dry mouth were the only symptoms, it's not like any dry eyes or dry mouth you might have after a day of drinking too much alcohol in the sun.

The primary mechanism of Sjogren's Syndrome is when your body's own white blood cells (lymphocytes) attack and invade your exocrine glands.  Exocrine glands are moisture producing glands found throughout your body.  Saliva glands and tear glands are exocrine glands, and thus when Sjogren's causes lymphocytes to damage those glands, you end up with dry eyes and dry mouth.  Exocrine glands are also found in the esophagus, stomach and pancreas, to aid with production of digestive juices. Sweat glands on the skin are also exocrine glands, which help cool down your body and rid the body of toxins.  There are exocrine glands in your sinuses, lungs and vocal cords, which moisturize the mucus membranes in those areas to protect you from infections and particulates like smoke and pollen.  There are exocrine glands in the female and male genitalia, to assist with lubrication during sexual intercourse, which help prevent infections and physical damage to the area.

So what happens when Sjogren's damages some or all of those exocrine glands? 

The lungs can become dry and easily irritated, exacerbating asthma, causing shortness of breath, causing increased infections, increased sensitivity to particulates like smoke and pollen and frequent dry coughing.  Sjogren's can lead to recurrent bronchitits, pneumonitis and interstitial lung disease.  Dry stuffy sinuses, frequent nosebleeds, sinus infections and recurrent sinusitis can occur.

Frequent and long lasting canker sores, oral infections, cavities, receding gums, the need for dentures at a young age, difficulty speaking and swallowing, choking on food, swelling of the salivary glands, so much so that the patient may have large lumps on the side of the cheeks.

Acid reflux, GERD, heartburn, esophagitis, stomach upset, gastroparesis (an abnormal slowing down of digestive movement thru the bowels), cramps, nausea, autoimmune pancreatitis

Dry skin, vasculitis (swelling of the veins which can be painful), Raynaud's Phenomenon (severe pain and skin color changes in hands/feet with exposure to cold)

Dry eyes, scratchy eyes, itchy eyes, eyelids sticking to eyeballs, crusty eyes, searing stinging pain in eyes, blurred vision, ulcerations of the eye and frequent eye infections.

Vaginal dryness, painful sexual intercourse, irritation, itching or swelling after sexual intercourse, more frequent yeast infections.

Swollen liver which can cause abdominal pain, abnormal liver function tests, chronic active autoimmune hepatitis, primary bilary cirrhosis.

Sjogren's can also manifest in ways that are not directly correlated to exocrine gland damage.  There are other inflammatory processes involved in Sjogren's and researchers are still trying to identify the exact physiological mechanisms by which these "extraglandular" symptoms occur.

Arthritis, joint pain, joint swelling and inflammation, muscle pain, fibromyalgia like symptoms.

I gave this a category unto itself because it doesn't fit neatly into any other category.  Fatigue is one of the most common symptoms of Sjogren's.  It is a fatigue that is not relieved by rest and sleeping.  You can sleep well for 10 hours, and wake up feeling like your just got run over by a truck.  Some patients report feeling good one day, and the awful the next, or good one week, and then awful the next - this cyclic presentation is common in many autoimmune diseases.  The best description I have heard is someone who said it feels like you have the flu everyday, or it feels like you have been beaten up by a thug.  When the fatigue hits me bad, I feel like I have cement shoes on and bowling balls tied to my arms and head.  It takes great effort just to get out of bed or stand up from a chair.

Central nervous system complications can result in spinal and brain lesions, cognitive/memory impairment (brain fog), painful peripheral neuropathy (causing by damage to sensory small fiber nerves in the feet and other extremity areas), motor neuropathy (damage to nerves that control muscles, which can impair ones ability to walk or use ones arms), and autonomic neuropathy (damage to the nerves that control heart rate, blood pressure blood volume, breathing, digestion and other essential involuntarily bodily functions - autonomic neuropathy can cause POTS).  Sjogren's can damage any nerve in the body, but scientists haven't figure out the precise mechanism by which this occurs.  Some theorize that vasculitis (swelling of the blood vessels) presses on the nerves and eventually causes them to be squeezed to hard they lose function.  There is other evidence that alpha-fodrin antibodies directly attack the nerves in some Sjogren's patients, and that this frequently appears before the onset of the more traditional dry eyes/dry mouth exocrine gland symptoms.

Sjogren's can be divided into Primary and Secondary forms. People with the Primary form just have Sjogren's, but are more likely present at a later point in their life with another autoimmune disease compared to the general public.  Secondary Sjogren's is when someone has Sjogren's secondary to another autoimmune disease, such as lupus or rheumatoid arthritis.  For many patients with autoimmune diseases, over time if they develop one, they are more likely to develop a few more as well.

Women with Sjogren's, are more likely than healthy women to miscarry during pregnancy.  This is because anti-phospholipid anitbodies, which are associated with Sjogren's and other autoimmune diseases, tend to cause abnormal blood clotting, which can clot in the placenta and injure the fetus.  If anti-phospholipid antibodies are identified in the mother, clots can be prevented through treatment with heparin, coumadin or other anti-clotting medications.   

If the baby is born, it is more likely to suffer from heart block - an abnormal heart rhythm that may require the baby to receive a pacemaker shortly after birth.  This is quite rare, but a known complication of pregnancy in women with Sjogren's.  

The baby could also be born with a form of Lupus that is believed to be temporary - visible signs may include the butterfly malar rash on the baby's face.  This is because the SS-A and SS-B antibodies associated with Sjogren's can transmit from mother to baby.

Any woman with an autoimmune disease considering pregnancy should speak with her rheumatologist beforehand, to identify any possible complications and make plans to deal with such situations in advance.

Sjogren's patients have a 44-fold increase in the risk of developing non-Hodgkin's lymphoma, compared with the general population.  If you understand the basics of the underlying Sjogren's disease process, which is that certain immune cells don't die off soon enough when they are supposed to (B-cells), them lymphoma makes sense, because lymphoma is a proliferation of too many B-cells sticking around for too long in the body.

So as you can see, Sjogren's is not just dry eyes and dry mouth.  For most Sjogren's patients, dry eyes and dry mouth are the least of their concerns!

My next post will be about Sjogren's treatments... stay tuned.

Sep 2, 2011

What Should a POTS Grrl (or Guy) Eat?

So many of my POTS friends have malnutrition problems, even though they are trying their best to eat lots of healthy foods.  Nutritional deficiencies can creep up on POTS patients because so many of us have trouble swallowing, choking on food, acid reflux, vomiting, nausea, gastric motility problems, constipation, diarrhea, stomach cramps and just a general malabsorption problem in our guts.  Also, illness can rob you of important vitamins and minerals.  Imbalances in the body can divert nutrients away from the places it belongs and into places it doesn't belong in your body.  If you are fighting an infection or if you are just having lots of tachycardia all day, your body can burn more calories than normal, speeding up your metabolism even if you aren't exercising.  

I had a 60 lb, weight loss within the first six months of developing POTS.  Thankfully I was a little chubby and had some spare weight to lose.  At my skinniest, I was 120 lbs. and I'm almost 6 ft tall.  POTS had me looking like an Olsen twin with ribs sticking out and shoulder blades so sharp I could kill someone.  Only supermodels look good when they are that skinny.  I just looked too skinny and sick.  After some serious diet changes, I was able to put on a healthy 15 lbs, and I am now working very hard to keep on the weight.

If you are losing weight without trying, you are also probably not getting the vitamins and nutrients your body needs to sustain itself.  The most common nutritional deficiencies in POTS are low potassium, low Vitamin D and low iron.  Many POTS patients have low magnesium and low calcium too.  You should ask your doctor to run blood tests to check the basic vitamin levels in your body.  

Here are some good foods to eat if you are deficient in any of those vitamins, or even if you just want to prevent any vitamin deficiencies.

-dried apricots
-apricot baby food
-coconut water
-prune juice
-carrot juice
-white potatoes
-winter squash
-beans (lima, pinto, white, kidney)
-black strap molasses (1 tbsp has more potassium than a banana)
-see other high potassium foods

-direct sunlight, not through a window, is a great way to get Vitamin D (your skin makes it when you are exposed to sunshine)
-canned tuna in water
-shrimp (boiled or steamed)
-orange juice that is fortified with Vitamin D (check label)
-shitake mushrooms
-Vitamin D supplements are pretty cheap and are available in most drug stores.  They are usually very small gel capsules that are easy to swallow compared to larger vitamins.
-see other Vitamin D foods

IRON (absorbed best when eaten with something that has Vitamin C in it)

-clams, oysters, mussel
-dark leafy greens (spinach, kale, collard greens)

-roasted pumpkin seeds
-sunflower seeds
-sunflower nut butter (like peanut butter, but made from sunflower seeds)
-dried herbs (Thyme, Parsley, Black Pepper, Marjoram, Cumin Seed, Dill, Oregano, and Rosemary)
-corn flakes
-see other high iron foods

If you are having serious GI issues and keep losing weight, you should talk to your doctor about getting tested for celiac disease.  People with celiac disease get sick from eating anything with gluten in it, which includes wheat, barley, rye, some forms of oats and other less common grains.  Gluten is hidden in many processed foods, even some sodas.  Celiac disease can cause nerve damage, which can cause POTS like symptoms.  Many POTS patients who don't have celiac disease still have a gluten sensitivity, and feel much healthier when they stop eating gluten.  As soon as I stopped eating gluten, my GI symptoms greatly improved and I stopped losing weight. I have other blog posts about going gluten free on this site, which you can find using the search bar on the top right of the page. Gluten free doesn't have to be expensive, so don't use that as an excuse not to try it.

If you have a hard time swallowing and digesting foods, you may want to try eating more "wet" foods like steamed spinach, mashed potatoes, mashed veggies (turnips and cauliflower almost taste like mashed potatoes), soups, and even baby food.  Sometimes I get myself some apricot puree baby food, which actually tastes pretty awesome.  You can also try making smoothies out of some of these ingredients.  You may also want to try out a juicer - to help you get the fruits and veggies you need.  Check out my prior post on the raw food diet, written by a guest POTSy who is on a liquid diet-she had some good blender recipes. Here are my favorite smoothie and juicer combos.

                                                                      For the blender:
Banana Nut Smoothie 
Soy, rice or cow's milk as a base
peanut butter or sunflower nut butter
ice if you'd like it

Berry Good Smoothie
Any flavor yogurt you like
Any flavored berries you like
banana (if you'd like)
ice (if you'd like)

Cucumber Watermelon Cooler
Plain Yogurt
fresh Mint (mint may not be a good idea if you have acid reflux)
fresh parsley
fresh cilantro

                                                                     For the juicer:

I basically mix half "bitter" juices with half "sweet" juices.  The bitter stuff is healthier and the sweet stuff is tastier.  If you drink straight sweet juice, you may give yourself a mega dose of sugar, without all of the healthy fiber found in whole fruits.  I add salt to most of my juice, and believe it or not, it complements the sweet juices pretty well if you don't overdo it.  Fresh juice is best when consumed within 15 minutes of juicing it.  It starts to lose enzymes and antioxidants pretty quickly after that.

Bitter Juices
Celery Stalks

Sweet Juices
Grapes (including stems)

Watermelon Gazpacho-for the juicer
-fill a large bowl halfway with fresh watermelon juice
-juice 1/2 a cucumber into the bowl
-add large tablespoon of sour cream or plain yogurt to the bowl and blend well
-chop up remaining watermelon and cucumber into bite sizes pieces and add to -bowl
-add fresh herbs, cut chiffonade style (thin little strips)-mint, parsley and cilantro
-serve with fresh sour cream and/or avocado as a topping in each soup bowl
-salt and pepper to taste