I remember using a ton of eye drops and never getting any relief. I was finding pieces of Sclera (the white, dense, fibrous outer coating of the eyeball) inside the lids and I was getting scarring. I was working full time and going to school at night; looking at a computer screen all day and books all night made it much worse! The lights at night were a big blur and I couldn’t focus at all. My eyes were literally drying up. I was having ongoing eye infections. To say the least I was going blind and was petrified.  I couldn’t wear contacts to save my life. They would pop right out or worse, get caught in the corner of my eye.

I saw an eye doctor who never gave me answers. He never thought to test me for Sjögren’s Syndrome. They put silicone plugs in my tear ducts to try and keep what little moisture I had in my eyes. Talk about a scary situation! My general doctor was determined to find out what was going on because it went way beyond the eyes. I was extremely fatigued and had major joint and muscle pain, stomach issues, brain fog and upper respiratory infections often. I was pretty discouraged, but felt lucky my doctor cared, who by the way told me it wasn’t in my head (nice rarity). I knew eventually we would figure it out. He ran some blood work and pulled out the big guns (gigantic reference book) while explaining I had Sjögren’s Syndrome and sent me to a Rheumatologist. I was not in the mood to add more medication to my already long list at the time and decided to look into alternative care. I already had developed hypothyroid – another autoimmune disease. Since going gluten, dairy and soy free, I have been able to wear contacts daily and most of the symptoms from Sjögren’s are gone. I consider myself one of the lucky ones who took control and is able to manage a great deal with nutrition alone.

What is Sjögren’s

Sjögren’s syndrome is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Today, as many as four million Americans are living with this disease.
Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

With upwards of 4,000,000 Americans suffering from Sjögren’s syndrome, it is one of the most prevalent autoimmune disorders. Nine out of 10 patients are women. About half of the time Sjögren’s syndrome occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma. When Sjögren’s occurs alone, it is referred to as “Primary Sjögren’s.” When it occurs with another connective tissue disease, it is referred to as “Secondary Sjögren’s.”

All instances of Sjögren’s syndrome are systemic, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission. While some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatment are important – they may prevent serious complications and greatly improve a patient’s quality of life.
Since symptoms of Sjögren’s syndrome mimic other conditions and diseases, Sjögren’s can often be overlooked or misdiagnosed. On average, it takes nearly seven years to receive a diagnosis of Sjögren’s syndrome. Patients need to remember to be pro-active in talking with their physicians and dentists about their symptoms and potential treatment options.

Testing

There is no single test that will confirm diagnosis. Rheumatologists have primary responsibility for diagnosing and managing Sjögren’s syndrome and can conduct a series of tests and ask about symptoms. An international group of experts formulated classification criteria for Sjögren’s syndrome which help doctors arrive at a diagnosis. These criteria consider dryness symptoms, changes in salivary (mouth) and lacrimal (eye) gland function, and systemic (whole body) findings.
Blood tests your physician may perform include:
ANA (Anti-Nuclear Antibody)
ANAs are a group of antibodies that react against normal components of a cell nucleus. About 70% of Sjögren’s patients have a positive ANA test result.

RF (Rheumatoid Factor)
This antibody test is indicative of a most often performed for the diagnosis of rheumatoid arthritis (RA)  but is positive in many rheumatic diseases. In Sjögren’s patients, 60-70% have a positive RF.

SS-A (or Ro) and SS-B (or La)
These are the marker antibodies for Sjögren’s. Seventy percent of Sjögren’s patients are positive for SS-A and 40% are positive for SS-B (these may also found in lupus patients).

ESR (Erythrocyte Sedimentation Rate)
This test measures inflammation. An elevated ESR indicates the presence of an inflammatory disorder, including Sjögren’s syndrome.

IGs (Immunoglobulin’s)
These are normal blood proteins that participate in immune reactions and are usually elevated in Sjögren’s patients.

The ophthalmologic (eye) tests include:

Schirmer Test
Measures tear production.

Rose Bengal and Lissamine Green
Eye drops containing dyes that an eye care specialist uses to examine the surface of the eye for dry spots.

The dental tests include:

Salivary Flow
Measures the amount of saliva produced over a certain period of time.

Salivary scintigraphy
A nuclear medicine test that measures salivary gland function.

Salivary gland biopsy (usually in the lower lip)
Confirms inflammatory cell (lymphocytic) infiltration of the minor salivary glands.

Your physician will consider the results of these tests along with your physical examination to arrive at a final diagnosis. Further research is being conducted to refine the diagnostic criteria for Sjögren’s syndrome and to help make diagnosis easier and more accurate.

Treatments

The treatment of patients with Sjogren’s syndrome is directed toward the particular areas of the body that are involved and complications, such as infection. There is no cure for Sjogren’s syndrome.

Dryness of the eyes can be helped by artificial tears, eye-lubricant ointments at night, and minimizing the use of hair dryers. When dryness becomes more significant, the ophthalmologist can plug the tear duct closed so that tears cover the eye longer. Cyclosporine eye drops (Restasis) are recently approved medicated drops that can reduce the inflammation of the tear glands improving their function. These however  are painful to use and have side effects. Signs of eye infection (conjunctivitis), such as pus or excessive redness or pain, should be evaluated by the doctor.

The dry mouth can be helped by drinking plenty of fluids, humidifying air, and good dental care to avoid dental decay. The glands can be stimulated to produce saliva by sucking on sugarless lemon drops or glycerin swabs. Artificial saliva preparations can ease many of the problems associated with dry mouth. Many of these types of agents are available as over-the-counter products, including toothpaste, gum, and mouthwash (Biotene). Vitamin E oil has been used with some success. Infections of the mouth and teeth should be addressed as early as possible in order to avoid more severe complications. Diligent dental care is very important. Saltwater (saline) nasal sprays can help dryness in the passages of the nose.  Vaginal lubricant should be considered for sexual intercourse.

As mentioned, each person is different in how they are affected by Sjögren’s. Because I know first hand I would say first and foremost – GO OFF GLUTEN. Once you have that under control you can talk to your doctors about complimentary treatments if needed. The biggest thing with any auto immune disease is inflammation. Make that your number one goal to have that under control. Consider a holistic approach which has no side effects and is a lot safer.

Some essential survival tips for Sjögren’s patients:

• Avoid stomach upset.
• Never feel guilty about seeking a second opinion.
• Join a support group if needed.
• Listen to your body. Do not take on more than you can handle, and pay attention to new symptoms, or symptoms that get worse, and tell your practitioner.
• Do your research.
• Make sure you coordinate all of your care in Sjögren’s and head your “medical care team.” You want to make sure you are keeping records on medications, supplements and herbs. Make sure your physician knows about all the prescription and OTC medications you are taking. Many drugs have side effects that can make your Sjögren’s symptoms worse.
• Become an active participant in your treatment decisions and an informed consumer. You will feel more in control of your disease, decrease anxiety, and ensure you are getting the best possible medical care for you.
• You can maintain a good quality of life with Sjögren’s. Stay on top of the latest information, educate yourself, find support and watch your limits.
• Keep positive relationships and support in your life. These will help you cope and will reduce general anxiety when you have a frequently misunderstood disease.

Dry Mouth Survival Tips

• Eat soft, moist foods if you have trouble swallowing or with your teeth chipping and breaking.
• Sjögren’s patients should eat smaller, more frequent meals to stimulate saliva flow.
• Avoid salty, acidic or spicy foods and carbonated drinks that may be painful on your dry mouth or interfere with digestion in Sjögren’s.
• Help prevent dental decay by using oral products containing the sweetener xylitol For dry mouth, increase your intake of liquids during the day. Remember that small sips of water work best.
• Sjögren’s patients should avoid mouthwashes and rinses that contain alcohol or witch hazel. These ingredients can aggravate oral dryness and burning.
• Chew sugar-free gum or suck on hard diabetic or sugar-free candies to help increase saliva. The best gum I’ve found has xylotil called Spry. They also carry mints.
• Apply vitamin E oil or moisturizing gels to dry or sore parts of the mouth or tongue for long-lasting relief. Use the liquid oil or punch holes in vitamin capsules to apply.

Dry Eye Survival Tips

• Try sterile eyelid cleansers or baby shampoo on a warm washcloth to help with blepharitis, a common condition in Sjögren’s that causes chronic inflammation of the eyelids and eyelid margins.
• For dry eye, apply a warm, wet compress to the closed eyes using a washcloth. Apply at bedtime and upon awakening for 5 minutes, or more often if helpful.
• The mainstay of treatment for blepharitis, a chronic condition that accompanies dry eye and Sjögren’s, is warm compresses, lid massage and lid hygiene.
• If your eyes are bothered by light, wear sunglasses or try lenses with a FL-41 filter.
• Avoid applying anything to the eyelids that can irritate your dry eye; products placed on the eyelid will get into the tear film.
• Use non-preserved artificial tears frequently and regularly, even when your eyes feel good. The goal is to keep your eyes comfortable, not to wait until they are uncomfortable.
• Keep the upper and lower eyelids free of facial creams at bedtime; they can enter the eye and cause irritation.
• Try ointments or gels at bedtime by first applying them only to the eyelids and lashes. If that is not helpful, place ~1/4 inch of ointment between the lower lid and eyeball.
• Eye ointments and gels can blur your vision and are usually reserved for overnight use.
• If your vision is blurred with artificial tear use, try a less thick (viscous) drop or ointment.
• Try moisture chamber glasses, wrap-around sunglasses, or other glasses, goggles or shields to prevent moisture evaporation and offer protection from air currents that irritate your dry eye.

Dry Skin Survival Tips

• Take short, warm baths or showers to help with dry skin. Hot water removes skin oils.
• Sjögren’s patients with dry skin should pat dry after bathing and moisturize immediately while the skin is still damp. Natural oils such as coconut, almond, sesame and apricot work well.
• Sjögren’s patients with dry and/or sensitive skin should avoid fabric softeners in the washer and dryer. Always use hypoallergenic products.
• After swimming, make sure that you shower and immediately use a moisturizer to reduce dry skin symptoms.

Sun & Sjögren’s Survival Tips

• To reduce reactions to the sun, wear good UV-protective eye lenses and sunglasses, and seek the shade when outside.
• Protect your skin and eyes through use of sunscreen, sunglasses, ultraviolet light-protective clothing, hats, and non-fluorescent lighting.
• Did you know that ultraviolet (UV) radiation from the sun and other light sources can affect Sjögren’s patients, leading to skin rashes, disease flares, eye sensitivity and pain?
• Consider purchasing UV-protective car and home window films that are clear or tinted to protect yourself from UV radiation.
• Look for the words “broad spectrum” on sunscreen protection. This means that you will be protected from both UVA and UVB radiation.
• Make sure you are taking enough Vitamin D3 and antioxidants.

Fatigue Survival Tips

• Battling fatigue with Sjögren’s? Know your limits and pace yourself.
• Don’t be a couch potato! A common cause of chronic pain and fatigue in any disorder, including Sjögren’s syndrome, is lack of exercise.
• Educate your friends and family about what you are going through and how fatigue in Sjögren’s syndrome can come and go.
• Sjögren’s can cause fatigue, but there can be other related causes such as adrenal fatigue or hypothyroid disease and depression.

Brain Fog Survival Tips

• Did you know that “brain fog” is a major complaint of Sjögren’s patients? Hint: Train the brain! If you don’t use it, you will lose it.
• Don’t assume your “brain fog” is due to Sjögren’s, especially in patients over 65-70 years of age: a major cause of cognitive dysfunction can be side effects of drugs and drug interactions and food intolerance such as gluten and dairy. These foods are inflammatory and cause an opiate affect similar to brain fog.
• To help symptoms of “brain fog,” minimize stress and anxiety. Take breaks throughout the day and learn relaxation exercises and practice them at regular intervals.
• Reduce caffeine and alcohol to help with “brain fog” and sleep problems in Sjögren’s.

Dry Nose & Sjögren’s Survival Tips

• Use natural saline spray several times a day if needed. Clean and moisture nasal cavity in the morning and again at night. This helps keep allergens from settling in the cavity as well.
• Dry Ear Survival Tips
• A drop of earwax remover or mineral oil can help dry itching ears.

Herbal Remedies and Supplements

Rosemary

The rosemary plant contains several anti-inflammatory agents that help in the prevention of arthritic pain and dryness caused by Sjogren’s Syndrome. It is recommended to make rosemary tea instead of eating the plant. Mix a half an ounce of rosemary leaves in a pot of boiling water. Cover the pot, and let the mixture simmer for 30 minutes. Consume the tea before going to bed. This can be repeated as often as necessary.

Evening Primrose Oil

Evening primrose oil contains gamma linolenic acid, also known as GLA. GLA is a fatty acid that helps Sjogren’s Syndrome sufferers by introducing prostaglandin into the system. Prostaglandin in turn works as an anti-inflammatory to help common Sjogren’s Syndrome symptoms. Evening primrose oil should be taken daily, with a dosage of 3,000- to 6,000-mg.

Celery Seeds

Celery contains several different anti-inflammatory agents that can help Sjorgren’s Syndrome symptoms such as joint paint, inflammation, and lethargy. Celery also packs over 340 milligrams of potassium per single cup. This is beneficial to anyone with an autoimmune disease, since lack of potassium can cause arthritic like symptoms. Celery plants can be eaten in large quantities, but for faster and easier results, celery seeds are recommended. Place a teaspoon of celery in a cup of boiling water. Up to three cups daily may be consumed.

Gamma-linolenic acid (GLA) may actually reduce inflammation. Much of the GLA taken as a supplement is converted to a substance called DGLA that fights inflammation. Having enough of certain nutrients in the body (including magnesium, zinc, and vitamins C, B3, and B6) helps promote the conversion of GLA to DGLA.

Cysteine is an amino acid that can be found in many proteins throughout the body. When used as a supplement, it is usually in the form of N-acetyl-L-cysteine (NAC). The body converts this to cysteine and then to glutathione, a powerful antioxidant reducing symptoms associated with Sjögren’s syndrome.

REFERENCES:

Koopman, William, et al., eds. Clinical Primer of Rheumatology. Philadelphia: Lippincott Williams & Wilkins, 2003.

Kelley’s Textbook of Rheumatology, W B Saunders Co, edited by Shaun Ruddy, et al., 2000.

Sjögren’s Foundaton.

You can read all about Sandi Star’s remarkable story in her 3-part article series available at the following links:  Living Gluten Free – Right to Heal – Part I, Living Healthy, Without Gluten and Dairy– Part II, Living Healthy, Without Gluten and Dairy Part III.

About the author: Sandi Star, CCN Sandi is the founder of Karmic Health, specializing in nutrition related to disease where a gluten and casein (dairy) free lifestyle is crucial; working with celiac, autism and all auto immune disorders. Sandi graduated from The Natural Healing Institute with a degree in Clinical Nutrition and is continuing her studies in Clinical Herbology. She has hands on understanding of many health issues and has dedicated her life in helping others reach their optimal health.

For more information related to this article  (or her previous articles) please visit www.karmic-health.com or contact Sandi Star at 760.685.3154.

Tina Turbin
www.GlutenFreeHelp.info

My intestines and joints burning, I stopped at a Whole Foods. I saw some little bottles—Bio-K+, which I’ve seen for years. I grabbed one and pushed my cart forward. I couldn’t wait. I opened up the bottle and took a large gulp of the liquid contents. I felt immediate relief and knew, “Something is right here!” I finished the little bottle and proceeded to tell my husband I wanted to buy more.

Now my husband knows me, knows the years of troubles without the correct diagnosis, and now knows clearly the signs that I’ve ingested some gluten inadvertently. He also knows me well enough that when I say something makes me feel better, he’s 100% behind it. He purchased for me a small box of six, and off we went.

My symptoms usually take three to seven days to get better, which I call my period of “recovery.” By the next day my symptoms were better, and I could actually feel my small intestines inflammation subsiding drastically. I’ve spoken to many celiacs, and it does seem that this three to seven day recovery period is common.

Well, needless to say, I came home and have been using this same product Bio-K+ since my fall 2008 book tour. I have not had a simple adverse effect since taking it. I’ve elected to take the dairy-free Bio-K+, which is soy-based, and I can’t recommend a finer product.

There are 50 billion live and active bacteria per bottle. Fresh-culture Bio-K+ bacteria resist stomach acid and bile salt and works with the intestinal tract to get results—like mine.

I am totally interested in asking BIoK Plus to join me on one of my radio interviews! Be on the look-out folks!

Tina Turbin

After struggling for over 40 years with chronic migraines, IBS, Muscle and joint pain, fatigue, brain fog, asthma and a slew of other ailments and frustrations I decided to take a closer look at the cause rather than obsessing on the symptoms. I was tired of relying on doctors to give me answers and tired of the medications that only gave me side affects and little relief.

I had been committed to health and fitness for over 20 years, losing close to 50 pounds and 5 dress sizes, however I still had all the chronic conditions that played havoc in my life. I realized there was a key element missing and soon found out it was my reaction to gluten and dairy. I didn’t know enough about food intolerance or allergies or at least put the two together. I never believed food could have such a serious impact on overall health let alone be the direct cause of my diseases. With what I know today I’m surprised my doctor didn’t put the connection together when he diagnosed me with Sjögren’s Syndrome (autoimmune disease). Sjögren’s is one of the symptoms of Celiac diseaseamongst a long list including:

• Fatigue

• Addison’s disease (hormonal disorder)
• Gastrointestinal distress (gas, bloating, diarrhea, constipation, vomiting, reflux) 
• Headaches (including migraines) 
• Infertility 
• Mouth sores 
• Weight loss/gain 
• Inability to concentrate 
• Moodiness/depression 
• Amenorrhea/delayed menarche (menstrual cycles) 
• Bone/joint/muscle pain 
• Dental enamel hypoplasia (dental enamel defect)
• Short stature 
• Seizures 
• Tingling numbness in the legs.

Nutrition was the key to my healing process. By making the appropriate diet changes – (gluten and dairy free), I’ve managed to eliminate my migraines, IBS………etc., etc., meaning I reduced the inflammation in my body caused by gluten and dairy. I’ve also kept the Sjögren’s Syndrome under control. Even better, I have eliminated all medications and use food and natural remedies for nutrition and overall health.

I became a clinical nutritionist and started Karmic Health because I am so thrilled to be able to help others with my experience, education and passion in the field of nutrition and functional medicine. In the next issue I will get into the details of why it’s so important to understand gluten and how it has changed over the past 50 years; how it relates to many diseases. I’ll also explain wheat allergy verses intolerance and leaky gut; and of course the most extreme case – Celiac disease.

Sandi is the founder of Karmic Health; specializing in nutrition related to disease where a gluten and casein (dairy) free lifestyle is crucial. Sandi works with celiac disease, autism and all auto immune disorders. Sandi graduated from The Natural Healing Institute in Encinitas CA., with a degree in Clinical Nutrition and is continuing her studies in Clinical Herbology. She has hands on experience and a true understanding of many health issues and has dedicated her life in helping others reach their optimal health.

Please sign up for the RSS feed on the right hand column of every page to receive  regular posts or check back every 2nd of the month for another story or informative information from nutritionist, Sandi Star, CNN.

Thank you Sandi!

Tina Turbin

When a simple call to a police official can get your pre-school or elementary school child handcuffed and placed in a mental institution, you know something is VERY wrong. What gives them the right to by-pass the parent’s authority of the child and by-pass the parent’s right of guardianship. Not that I agree with my 94 year old grandmother when she commented on this,What happened to the good old days with the simple spanking or slap on the back of the hands with a ruler” -but tell me, what has happened to our society? Can’t we expect and demand simple discipline to  child where we can be confident it is  safely applied? Isn’t this our right? My advice to you is “get involved”.

I deal a lot with teachers, children and moms as a children’s author and I can tell you the number of times I speak about kids and the school system is often. I welcome any radio station to have me on when it comes ot topics like this. I have a lot to share about actions like this. Please read this:

On FRIDAY, FEBRUARY 12, 2010 a young girl was sent to an adult mental institution for being unruly. This seems to be the way Port St. Lucie’s ( FL) school system has in dealing with disruptive students. This same school district allowed an autistic boy to be voted out of kindergarten class for unruly behavior.

Also, a Parkway Elementary School( FL) student was cuffed and sent to an adult mental institution earlier this month after she through a temper tantrum in the middle of class, reports TCPalm.com. The police report stated the cuffs were "for her safety and the safety of others”.The handcuffs calmed the little girl down after an hour in the tight silver handcuffs yet little did her and her family know what was ahead.

A few days later, this same girl had another “fit” and the school called the same deputy, who  tossed the little girl in the back of his patrol car and transported her to the local adult mental institution. “The girl’s mother said “These people are going to the extreme”.

5-year-old Alex Barton was voted out of class two years ago for being disruptive in class. Alex Barton had a form of autism and his mother is now suing the school board. The School Board official will most likely be looking into this one!

http://www.momlogic.com/2010/02/6-year-old_student_handcuffed.php#ixzz0fkdVvS0w

As American citizens we can not let things like this happen. I welcome your feedback and any involvement or situations you have witnessed like this. We can find many groups to help violations like this. See My Favorites as  a start. Contact me

Tina Turbin

Home-schooled 12 year old Logan and his dad Matt Winkler are traveling all 50 states during Logan’s 6th grade year and skateboarding wherever they go.

This weekend they are staying at Bobbi Burger Brunoehler house in the Los Angeles area. They still have the following states to go to:
HI, AK, OR, WA, Idaho, Montana, Wyoming, Utah, Colorado, Kentucky, W Va and Va.

The travelers are staying with friends, family and couch surfing. According to Bobbi they are wonderful guests.  Bobbi shares, “Matt is a fabulous dad and a great conversationalist and Logan is a pleasant young man.  I recommend them highly as guests, especially if you also are into skateboarding.”

If you would like to invite the Winklers to stay with you or know someone in the above states who would like to host them for a couple of days, you can contact them at: 50skatekid@gmail.com Their story is being documented at:
www.50skatekid.wordpress.co.

Tina Turbin

I am originating and authorizing Tina Turbin to share this story with you. Dr. Maureen Ellis

Maureen has generously offered to share her continued personal story. Check back for Part 2 or sign up for the RSS feed on this site on the right hand column. Read Part 1 now

Everyone has a story to tell and my journey toward living a healthy, gluten-free lifestyle is a unique story, one of which I hope will give other people hope for living a “ full” filled life after years of frustrations, tests, diagnosis and acceptance. From my personal experience, I can understand why someone would not feel fulfilled and would almost feel deprived being thrown into a situation where they can no longer eat the foods they have grown to love and share with their family and friends, but when the order was given for me to go gluten free, I was willing to do anything to feel better and bring a sense of normalcy and peace back into my life and that of my family. My name is Dr. Maureen Ellis, and I have Systemic Lupus Erythemtosus (SLE), which is a chronic autoimmune connective tissue disease that can affect any part of the body where the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage. Lupus has affected my central nervous system, gastrointestinal tract, biliary tract and pancreas. Please join me in my adaptation to a “full” filling gluten-free lifestyle.

After my children were born I decided to get my master’s degree. I fell in love with higher education and decided to pursue my Ph.D. I successfully defended my dissertation the month before I turned 41 and started my first tenure-track position two months later at a research institution. I felt like everything in my life had fallen into place and it was finally time to enjoy the fruits of my labor. We had a beautiful home, two great kids, my husband loved his job and we were starting to make our new environment feel like home. In April 2005, I went in for my annual exam and my doctor found a lump in my left breast. Without delay I had numerous tests and ended up in a surgeon’s office who immediately scheduled me for a lumpectomy to remove the tumor. He was 95% sure that my lump was cancerous. Believe it or not, the tumor was benign, but something went terribly wrong during surgery; it appeared as if my computer had decided not to reboot because when I woke up on May 7, 2005, nothing in my life would ever be the same. Now that I have been fully diagnosed, the doctors believe that Lupus had been a sleeping giant waiting to be woken up and we have been able to go through my childhood and realize that the symptoms of gluten intolerance and GI disorders have been a part of my life since I was a small child.

Following the lumpectomy, I couldn’t keep food down, had constant diarrhea and eventually became dehydrated so I was admitted back into the hospital. They hooked me up to an IV and some good drugs then sent me home to recuperate, only to find myself readmitted twice in the next couple of weeks. The doctors in the hospital said it was time to get to a specialist that there was definitely something strange going on inside. One doctor mentioned Crones Disease and Colitis so next step was making an appointment with a gastroenterologist. I went in expecting to get help and start feeling better soon as I was teaching summer school and it was tough when I didn’t have any energy. Right away he was positive it was Crones Disease, which is an inflammatory bowel disease or Celiac Sprue, which is an autoimmune disorder of the small intestine causing a mal-absorption syndrome from the ingestion of gluten-containing foods . I had the usual battery of tests like a sigmoidoscopy, upper GI, several blood and stool tests, all of which came back negative, except I had exceptionally fast transit and was trans-absorbing nutrients, which meant that my food was moving through my GI tract so fast that I wasn’t able to absorb any of the nutrients so I was suffering from malnutrition. Since I was continuing to lose weight from the chronic diarrhea and I was losing my appetite for food, I started pushing the doctor for answers, especially since we were already into early August and I wanted to be well before the new school year started. Looking back now, that was such an unrealistic goal as it took four years to get a complete diagnosis. In the meantime, the doctor suggested we start eliminating lactose to see if that helped and sadly enough, getting rid of my morning latte did help some with the gas and bloating but diarrhea was still running my life. I knew that as soon as I ate, within 20 minutes I would head straight to the bathroom with severe cramping and watery diarrhea. My life was literally revolving around what I ate, when I ate and then my distance to a bathroom. I started to feel isolated and was afraid to go out in public for fear there wouldn’t be a bathroom close enough when the trots came on. I had severe debilitating pain in my upper-right quadrant to the point I felt like I was being stabbed by a knife. One night I lay in bed planning my funeral because I was afraid to wake my husband and tell him I thought I was dying.

About a week before the fall semester began I prepared and had my colonoscopy and an endoscopy. And yes its true, the prep is far worse than the actual procedure because I remember nothing. The problem was that I never recovered and started becoming very, very sick. The results were basically inconclusive for everything. He took several biopsies and said he could rule out Crones for now, but it could be Celiac, but for now he would go with Irritable Bowel Syndrome (IBS). When I woke up, I about went insane because I knew in my heart of hearts this was something more serious than IBS. This was not stress related or because of something I ate, but something had gone terribly wrong with that surgery and I needed someone who would get to the bottom of it. I felt very alone and scared. Unfortunately at this point I didn’t have any energy to fight this doctor. By the end of the weekend, I was too weak to get out of bed so my husband called the doctor’s office and thankfully, he was on vacation. This gave my husband the idea to call our former landlord who was a Gastroenterologist. He explained what was going on and said, “Maureen is dying can you do anything for her”. My new doctor rode in on his white horse with his white hat on and very gently took over my case. Here is my first tip to anyone going through a difficult diagnosis: go with your instincts and find a doctor who you trust, who is kind, compassionate and willing to listen to you as a person. Switching doctors saved my life – I have no doubt in my mind.

My new doctor put me on some meds to get me through the weekend and I went in to see him the next Monday.  After looking at my medical history and test results, he said, I think I know what’s wrong with you but you’re going to have to trust me on this. And this is the moment when my journey changed. The first step was to start pain killers for the abdominal pain, sleeping pills so I could get a decent night’s sleep because as he said, you can fight the pain when you are rested, and we started in with a new battery of tests to determine gallbladder function. After a trip to the ER and several tests later, in October my gallbladder became infected and inflamed, which had to be removed. After surgery I didn’t seem to improve and continued to decline in health. By this time my diet consisted of saltine crackers, soup and oatmeal. The doctor suspected I had developed Sphincter of Oddi Dysfunction, which affects the valves in the biliary tract. The sphincter of oddi is a muscular valve that controls the flow of bile and pancreatic juice through the bile tract (area from the liver, gallbladder and pancreas to the stomach) and flows into the first part of the small intestine. Sphincter of Oddi Dysfunction (SOD) happens when that valve doesn’t relax and causes severe spasms. This causes the bile juices to back up and causes episodes of severe abdominal pain.

Typically, doctors wait 90 days after gallbladder removal to perform an ERCP, which is a type of endoscopy, to measure sphincter pressure. Unfortunately, my body didn’t wait that long and the sphincter valve ruptured on its own sending me to the ER in excruciating pain. The doctor explained that that valve is held together with what appears to be rubber bands and I was feeling each rubber band snapping free. The doctor performed emergency surgery to repair the sphincter valve and pancreatic valve. Recovery went very slowly from the SOD surgery and the upper-right quadrant pain was still present, although not as bad as it was before the surgery. My gastrointestinal symptoms continued on through the spring and in early summer of 2006, my doctor repeated the ERCP to clean out scar tissue he thought was causing the continued pain. Since my GI symptoms failed to improve, he decided to do the capsule endoscopy to test for celiac damage. This procedure required me to swallow what looked like a capsule. There was a tiny camera implanted in the capsule so when I digested it, it took pictures of my digestive system. I also wore a contraption all day that logged the pictures being taken inside of me. I am a technology geek and I have to admit, I thought it was pretty high-tech and very interesting. Although the blood tests did not come back positive, the capsule endoscopy did indicate that I probably did have Celiac Disease or at least I had intestinal damage to support that diagnosis so he determined the best course of action would be to remove all gluten from my diet. Through elimination, we also determined it was best to eliminate lactose and egg yolks as well. Following the gallbladder surgery and Sphincter of Oddi surgery I have not been able to process much fat and by this time I had pretty much eliminated most meat and nuts because they caused too much pain and distress and my body just refused to digest them. With my new diet in hand; a trip or two to a registered dietitian, in August 2006 I began my journey into living a fulfilled life without gluten, lactose, egg yolks, raw fruits and vegetables along with a low-fat diet.

To be continued….

Dr. Maureen Ellis, Ph.D.
Business and Information Technologies Education Department
East Carolina University

Thank you Mareen. Maureen has generously offered to share her continued story as time progresses. Check back for Part 3. Read Part 1 now

Tina Turbin  Please visit this site for more information

My husband I both feel like the reason I have been so successful with addressing my Gluten-Free situation is because of my ability to research in-depth every single component of this disease. The first time I went to the grocery store after getting my gluten-free diagnosis . . . I spent hours on the computer researching food and then at least 2 1/2 hours at the store reading labels. People without financial means or a commitment to educating themselves do not have the same opportunities for health, and that is something I want to be able to facilitate change. Just my two cents for the day. I will be sharing my story with you Tina, as a means to help others to get through their dilemma, and the severe troubles they may be going through. It is my way to help others.

Best wishes,
Dr. Maureen Ellis
Business and Information Technologies Education Department
East Carolina University

Read Part 2 now