Posts tagged ‘Celiac Disease’

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.”

June 11, 2018

Lactose Intolerance and Celiac Disease Go Hand-in-Hand

If you have Celiac Disease, it’s good to be aware that lactose intolerance and Celiac Disease go hand-in-hand. When your gut is healing, it’s sometimes hard to determine where intestinal distress originates. This can be frustrating when you’re diligently eliminating gluten from your diet, but still experiencing symptoms. Before you’re tempted to give up on a gluten-free lifestyle, perhaps it’s time to explore the possibility of lactose intolerance.
lactose
Lactose is a sugar found in milk. This disaccharide is composed of two simple sugars – glucose and galactose. Our bodies use an enzyme called lactase to break down glucose. Lactase is secreted by the villi in the intestine. We produce more of this enzyme as infants because human milk is high in lactose, but some adults produce enough lactase to tolerate milk. Others do not. Those with Celiac Disease may have significant damage to the villi in the intestine. This can affect lactase secretion resulting in secondary lactose intolerance.

How do I know if I have lactose intolerance?

The symptoms of lactose intolerance include abdominal pain, bloating, gas, gurgling and rumbling, diarrhea, and nausea that appear on average from 30 minutes to two hours after consuming milk or milk products.

Depending on your sensitivity, you may not recognize that milk and milk products are causing the problem. The connection may not be as direct as drink one glass of milk = all symptoms appear. Your symptoms may be related to the amount of lactose you consume.

One cup of whole milk contains approximately 12 grams of lactose. That 12 grams may not cause symptoms, but an added bowl of ice cream may put you in distress.

Can I still drink milk?

Drinking milk may make you miserable, but it does not cause damage to your intestine even if you’re lactose intolerant. If you want to drink milk, but don’t want to take the risk of embarrassing symptoms, there are lactose-free dairy products available. Another option is to increase the lactase in your system by taking a lactase enzyme pill.
lactaid
What should I avoid?

To limit your lactose intake, avoid:
Milk
Cream
Buttermilk
Sour Cream
Ice Cream
Sherbet
Evaporated or Condensed Milk
Hot Chocolate Mixes
Milk Chocolate
Malted Milk
Cream or Milk Stout (beer)
Soft and Processed Cheeses like ricotta, cottage cheese, cream cheese, Farmers cheese, queso fresco, cheese foods or cheese spreads
Cheese dip
Yogurt (unless you make it and let it ferment for at least 24 hours)
Whey
Gravy
Cream Soups
Alfredo Sauce
Béchamel
Instant potatoes
Mashed potatoes (unless you make them)
Bread, muffins, biscuits, rolls, pancakes, waffles, and crackers (read labels)
Ranch dressing
Cheese flavoring (read labels)
Other creamy salad dressings (read labels)

Can I have any dairy products?

Some dairy products have minimal amounts of lactose and are fine to consume. These include butter, aged cheeses like cheddar, Parmesan, provolone, or Swiss. Homemade yogurt that is allowed to ferment for 24 hours will break down all of the lactose into unharmful lactic acid. Fresh cheese made by draining this yogurt is also safe to consume. When in doubt, read the label, ask the chef, or make it yourself.

The easiest way to know whether your food contains dairy products is to make it yourself. In a restaurant, you can ask the chef or baker. If you have Celiac Disease, you most likely have lots of practice with this. You are also most likely an excellent label reader and are aware that milk is one of the top 8 allergens required to be listed on packaged products in the US.

It’s always disappointing to consider eliminating another category of foods if you’ve already eliminated gluten. At least with lactose, you have the option of taking enzymes to counteract the symptoms.

I’d have to say, I hate a stomach ache enough that I’m willing to endure lots of diet revisions in order to avoid one. I can’t think of a single roll, doughnut, cake, or even ice cream (and I love ice cream) worth the pain.

If you have Celiac Disease and continuing pain, it’s good to remember that Celiac Disease and lactose intolerance go hand-in-hand. This could be the secret to ending your abdominal pain.

https://www.niddk.nih.gov/health-information/digestive-diseases/lactose-intolerance

https://en.wikipedia.org/wiki/Lactose

https://www.drugs.com/cg/lactose-free-diet.html

https://en.wikipedia.org/wiki/Disaccharide

https://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/Allergens/ucm106890.htm

February 20, 2018

Is Your Gluten-Free Tummy Tied in Knots?

Is your gluten-free tummy tied in knots? You’ve given up your favorite Hawaiian bread, yeast rolls, biscuits & gravy, cake, crackers and doughnuts, but your tummy still feels like it’s tied in knots. That doesn’t seem fair! What’s going on?
knots
Before you grab a doughnut while pondering this question, keep in mind that gluten is not the source of all abdominal pain – even for a person with Celiac Disease.

In December, I contracted rotavirus (don’t believe anyone who says adults don’t get it). After a couple of miserable rounds of it, I could finally get off the couch and eat! The problem was, my system could no longer break down many foods. Almost two months down the road, I still have to avoid nuts and seeds, raw greens, and beef unless it’s shredded. I am slowly improving, but still often one food choice away from significant pain.

I have a friend who spent the bulk of 3 months on the bathroom floor after gall bladder surgery. Removing the source of the problem did not mean an instant end to her tummy troubles. She followed her doctor’s dietary recommendations, but her system adjusted much more slowly than anticipated.

One of my former employees has Crohn’s Disease that caused significant pain before she began a monthly regimen of chemotherapy. Now she has few restrictions and little pain.

There are many other medical conditions that cause stomach and abdominal pain – Inflammatory bowel disease, irritable bowel syndrome, hiatal hernia, ulcer, kidney stone, endometriosis, pelvic inflammatory disease, appendicitis, bowel blockage, hepatitis, gastroesophageal reflux disease (GERD), parasitic infection, and urinary tract infection.

Sometimes the aftermath of another condition causes the stomach lining to become inflamed or swollen causing gastritis that results in abdominal pain.

The point is, you can be getting healthier after removing gluten from your diet and still experience tummy pain. I know, that sucks. And it makes things confusing. It’s one of those unfortunate, frustrating possibilities.

Another possibility is that you have learned through traumatic experiences to reroute emotions like terror, rage, horror, or helplessness to portions of your body where you then experience those emotions as physical pain. Most of us have experienced a sinking feeling in our gut as a result of fear or stress. Imagine if you multiplied that feeling in intensity, duration, and/or repetitiveness. The resulting feeling could be that your tummy is tied in knots.

The original response to a stress may have been emotional, but the resulting response to similar situation becomes physical pain. Untangling the messages of somatic experience can take time. Sometimes it is difficult to determine the origin of physical pain.

I’m aware that I’ve shared lots of words with you that are not definitive for determining why your tummy is tied in knots. Hopefully, something you read here will give you a starting point for describing your pain to your physician or therapist.

In the meantime, if you have Celiac Disease or gluten intolerance, I encourage you to stay the course with your gluten-free regimen. You may be getting better even if your tummy is tied in knots.

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.”