Posts tagged ‘autoimmune’

December 26, 2018

And So This Is Christmas…Sipping Chicken Soup

christmas cookiesAnd so this is Christmas…sipping chicken soup. My grandchildren have had a virus. Now I have it. I am self-isolating in an attempt to stop passing illnesses back and forth. FaceTime visits will have to suffice.

We all get the occasional virus, especially when the children we’re around start attending daycare. Most of the time, the symptoms come, annoy us for a few days, and resolve themselves. We may be miserable for a brief period of time, but we don’t really expect any long-term effects.

While we may not always put two and two together, some viruses can trigger other diseases. One of those diseases is Celiac Disease. Researchers have discovered evidence that indicates a reovirus infection may set the stage for, or trigger, Celiac Disease in those with a genetic predisposition for developing it.

For anyone who’s new to this blog, Celiac Disease is the result of an autoimmune response to exposure to the gluten protein found in wheat, rye, and barley that tells the body to attack itself. Gluten intolerance causes a variety of symptoms and can eventually lead to Celiac Disease. Diagnosis begins with screening tests for antibodies in the blood and is confirmed through intestinal biopsy. In those with the skin version Dermatitis Herpetiformis, a skin biopsy testing for the IgA antibody is sufficient for diagnosis.

Reovirus is a seemly innocuous intestinal virus – a stomach bug. There are different strains in this viral family known as Reoviridae. These viruses are hosted by plants, animals, fungi, and microscopic organisms.

One strain commonly found in humans was shown to cause an immune inflammatory response and loss of oral tolerance to gluten in mice. Patients with diagnosed Celiac Disease reviewed in the study showed a higher level of reovirus antibodies and IFR1 gene expression. The researchers believe that this suggests an infection with a reovirus can leave a permanent mark on the immune system, setting the stage for a later autoimmune response to gluten. If further research confirms this hypothesis, it opens the possibility for developing and recommending a vaccine for children at high risk for developing the disease.

I’m tired of coughing on my keyboard and I mostly want to sleep so I’m going to cut this short. There are links below if you’d like to read more about this study, Celiac Disease, or a gluten-free diet.

If you suffer from any of the following symptoms, you may suffer from gluten intolerance or Celiac Disease. One in 133 people in the US are affected, but a high percentage remain undiagnosed. For a definitive diagnosis, do not eliminate gluten from your diet prior to screening tests or biopsies.

To assist your doctor with diagnosis, you can begin with a DNA screening from 23andMe along with a home screening blood test. Home tests are for screening purposes only and cannot replace the training and expertise of a physician. Take any indicative results to your doctor along with a list of your symptoms to begin a conversation and receive a definitive diagnosis.

Symptoms Caused by Gluten Intolerance or Celiac Disease:

General
Vague abdominal pain
Diarrhea
Weight loss
Malabsorption (Abnormality in digestion or absorption of food nutrients in the GI tract.)
Steatorrhea (Formation of non-solid feces.)
Behavioral changes
Fatigue or malaise
Growth delay

Hematological
Abnormal coagulation
Anemia (Lack of healthy red blood cells.)
Hematologic diathesis
Skin/Mucous Membrane
Dermatitis Herpetiformis (Skin manifestation of celiac disease.)
Alopecia (Baldness – both universalis (from the entire skin) and areata (diffuse hair loss))
Aphthous ulcers (canker sores)
Abdominal or generalized swelling
Epistaxis (nose bleeds)
Easy bruisability
Cheilosis (Scaling at the corners of the mouth.)
Keratoconjunctivitis sicca (Chronic dry eye.)
Stomatitis (Inflammation of the mucous tissue of the mouth.)
Scaly dermatitis (Inflammation of the skin.)

Musculoskeletal
Bone deformities
Broken bones
Non-specific bone pain
Joint pain(8)
Osteopenia (Low bone mineral density. Possible precursor to osteoperosis.)
Tetany (A combination of signs and symptoms due to unusually low calcium levels.)
Hyperreflexia (Overactive neurological reflexes.)
Carpopedal spasm (Spasms of the hands and feet.)
Cramps
Laryngospasm (Spasm of the larynx, the voice box.)
Osteopenia
Osteoporosis

Neurological
Ataxia (coordination problems)
Epilepsy
Myelopathy (Damage to white matter that carries motor signals to and from the brain.)
Peripheral neuropathy (Numbness and pain in hands and feet described as tingling or burning.)
Seizures

Gastrointestinal
Abdominal pain
Anorexia (poor appetite)
Bloating
Constipation
Cramps
Diarrhea
Dyspepsia (Recurrent discomfort or pain in the upper abdomen.)
Flatulence, distention
Foul-smelling or grayish stools that may be fatty or oily
Hypoglycemia (low blood sugar)
Steatorrhea (Formation of non-solid feces.)
Stomach upset
Malabsorption-Related
Bowel is less able to absorb nutrients, minerals, and the fat-soluble vitamins A,D,E, and K.
Bacterial overgrowth of the small intestine
Failure to thrive (Poor weight gain and physical growth failure over an extended period of time in infancy.)
Fatigue
Growth Failure
Swollen joints
Iron deficiency anemia
Malnutrition
Megaloblastic anemia
Muscle Wasting
Pubertal delay
Vitamin K deficiency
Weight loss

Miscellaneous
Hepatic disease (liver disease)
Hyposplenism (small and under active spleen)
Hyperparathyroidism (Excessive production of parathyroid hormone because of low calcium levels.)
Depression
IgA deficiency (Means you’re 10 times more likely to develop celiac disease, AND gives a false negative on screening.)
Increased risk of infections
Irritability

Autoimmune disorders
Sjogren’s syndrome
Thyroid disease
Diabetes mellitus type 1
Autoimmune thyroiditis
Primary biliary cirrhosis
Microscopic colitis
Infertility
Miscarriage

mug of soup
Okay, I’m going to return my attention to my mug of chicken soup. Wishing you a peaceful, happy, virus-free rest of the holiday season!!

https://www.sciencedaily.com/releases/2017/04/170406143939.htm

http://science.sciencemag.org/content/356/6333/44

https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

https://imaware.health/

https://blog.23andme.com/health-traits/new-23andme-report-celiac-disease/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2642513/

http://www.cooking2thrive.com/blog/cut-bite-size-pieces/

http://www.cooking2thrive.com/blog/top-ten-myths-gluten-free-diet/

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

January 16, 2018

How Many Cures are we Missing?

After happening across a documentary entitled, “Unrest” this weekend, I’m pondering the question: How many cures are we missing?

dna

“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea

That’s the powerful quote that stuck with me after watching the heart wrenching story of Jennifer Brea and others who suffer from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) also sometimes known as Myalgic Encephalopathy.

“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea

ME/CFS is a complicated illness affecting the neurological, immune, endocrine and energy metabolism systems. Like Multiple Sclerosis, Lyme Disease, Celiac Disease, and Fibromyalgia, ME/CFS has attracted controversy. For many years, it was a debated whether it was an illness at all. Today, up to 90% of people with this syndrome go undiagnosed. Approximately 75% of those affected can no longer work and 25% are homebound and sometimes bedridden.

monsterUnfortunately, the story we often tell when an illness has vague symptoms, is chronic or intermittent, is difficult to diagnose, has no cure, or is difficult to treat is that the patient has a psychological disturbance rather than a physical illness. Some doctors directly tell patients the symptoms are all in their head.

It has happened to me. During the two years I spent with an intracellular parasite encapsulated in a capped tooth, I was told by two different doctors that the extreme fatigue, abdominal pain, abnormal bleeding, and pain behind my right eye that occurred between each round of pneumonia were all in my head. The story they were telling nearly caused my death.

I had psittacosis that I contracted from pet Cockatiels which unbeknownst to me had been illegally imported. My diagnosis was confirmed by both a blood titer and a positive test of the birds. The good news is, I lived. The bad news is, it was an immense struggle to get medical help until I had 104 temperature, incessant vomiting, and pneumonia. At that point, I was considered ill. The fact that it kept recurring was considered unrelated.

That illness was 30 years ago. Any time I have crossed paths with one of those two doctors since then he asks me, “Are you sure those birds had something to do with it?” Yes, I’m sure. The tests indicated the birds carried the organism. The USDA asked for custody of the birds so they could save tissue samples to use as evidence against the pet store owner. YES, I’M SURE!

I am sure, but he is not. In spite of the supporting science, this doctor who is an animal rights advocate cannot bring himself to let go of his story. In his story, animals do not cause harm.

“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea

Every time I hear someone condescendingly say, “I believe in science,” I cringe. It’s not that I don’t believe in science. It’s that I recognize that we don’t have as much scientific knowledge today as we will have tomorrow. And what we learn tomorrow may turn today’s knowledge on its ear.

I also recognize that the story we construct around scientific observation may be filled with bias that can do real harm and, as Jennifer Brea so astutely points out, may cause us to miss a cure for a very real disease.

It can be difficult to develop a narrative most likely to cure. Some physical illnesses have associated psychological components. Sometimes depression is a reasonable response to the altered life circumstances we face from physical illness. Some wounds to the psyche manifest as somatic symptoms. There’s no doubt it’s complicated.

Just because it’s complicated is no reason to take a shortcut, rely on assumptions, perpetuate myths, or be dismissive of a patient because they have something outside your realm of expertise or experience. Perhaps my greatest disappointment with the medical community came when no one seemed remotely curious why I got pneumonia every time I stopped taking antibiotics and why I had continual symptoms in between rounds of pneumonia.

diagnosisI wanted someone to be curious to solve my puzzle. I thought that’s how diagnostics worked. I believed getting curious and trying to figure things out were a large component of practicing medicine. I believed that until the point at which I read my medical charts. It was an eye opening experience.

If you have an autoimmune disorder or auto-inflammatory disorder like MS, Celiac Disease, Lupus, CREST Syndrome, or Moersch-Woltmann syndrome, it may take months or even years to get an accurate diagnosis. The same is true of ME/CFS and many other chronic conditions – even common ones.

A study published in 2007 in The International Journal of Clinical Practice (found here on Pub Med) found “The under-diagnosis of common chronic diseases in the developed world ranges from about 20% for dementia and cirrhosis to 90% for depression and osteoarthritis. The delay in the prompt diagnosis and initiation of treatment is associated with increased morbidity and mortality for most of the reviewed diseases.”

There are models of hope: A movement toward Patient and FamilyCentered Care makes the patient part of the care team. Translational Research embraces the input of patients and the community as it seeks to implement scientific research into patient care. Systems that value the input of patients can help shift the story that is told about a disease.

Systems that invite curiosity, innovative thinking, imaginative approaches, and new information (even that which challenges current beliefs) rather than treating them as threats could vastly improve diagnostics and treatment plans.
curiosity
I view curiosity, a willingness to question, and the willingness to sometimes be wrong as confident qualities. I don’t believe that any physician will have all the answers. That would be unrealistic.

What I do hope for is physicians who are willing to exhaustively pursue knowledge that will help their patients. I hope for doctors who ask good questions. I long for a system that is not dismissive of ANY patient. I hope for physicians who can embrace and incorporate other opinions. I wish for practitioners with enough strength, character, and perspective to recognize areas in which they may be biased and with enough courage to question themselves.

“You can miss a cure because people are telling the wrong story about you.” – Jennifer Brea

Until we begin to question our stories, how many cures are we missing?

Resources
https://www.unrest.film/

https://www.cdc.gov/me-cfs/about/index.html

https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs

https://www.meaction.net/about/what-is-me/

http://www.meassociation.org.uk/about/what-is-mecfs/

https://multiplesclerosis.net/living-with-ms/portable-history-ms/

https://www.ncbi.nlm.nih.gov/pubmed/17686096

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”