Posts tagged ‘Celiac Disease’

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?
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?


“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.
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?


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.”

November 20, 2017

Celiac’s Relationship to Risk for Other Diseases

If you have Celiac Disease, it’s important to recognize Celiac’s relationship to risk for other diseases. It’s especially tempting at this time of year to ignore the signs of distress your body sends you when you eat bread stuffing, gravy on your turkey, flaky pie crust, gingerbread cookies, and Christmas cookies – after all, it’s the holidays! Before you grab another roll in spite of your physician’s advice to follow a gluten-free diet, it’s good to be informed about the other health effects this could have.
Here is a list of health conditions related to Celiac Disease:

Non-Hodgkin Lymphoma and Small Bowel Cancer are serious complications of Celiac Disease. The good news is that three to five years of adherence to a gluten-free diet reduces the risk of these cancers to the same risk found in the general population. The risk will remain the same as it is for the general population so long as the gluten-free diet continues.

In untreated Celiac Disease patients, Esophageal Cancer occurs at a rate as much as 8 times higher than in the general population. A gluten-free diet reduces this risk.

Those with Celiac Disease have a threefold higher risk of Papillary Thyroid Cancer. This is the most common type of thyroid cancer and is highly treatable.

Chronic Pancreatitis
Chronic Pancreatitis is an inflammation of the pancreas that worsens over time. Having Celiac Disease increases your risk of Chronic Pancreatitis threefold.

Celiac Disease is a known trigger for Scleroderma – an autoimmune condition that causes a hardening and tightening of the skin and connective tissue. It is chronic and without cure.

Chronic Obstructive Pulmonary Disease (COPD)
Chronic Obstructive Pulmonary Disease is the third leading cause of death in the US. A large Swedish study from 1987 – 2008 found that those with both diagnosed and undiagnosed Celiac Disease had a moderately increased risk of COPD.

Untreated Celiac Disease can lead to development of osteoporosis also known as brittle bones.

Untreated Celiac Disease may be an underlying cause of unexplained infertility.

Type 1 Diabetes
The incidence of Celiac Disease in patients with Type 1 Diabetes is 4 – 6% (possibly as high as 10% according to the Diabetes Council). Untreated Celiac Disease with resulting malabsorption can cause hypoglycemia in these patients. If you have Type 1 Diabetes and Gluten-Sensitive Enteropathy, it will be easier to manage blood sugar levels when you adhere to a gluten-free diet.

In addition to these diseases, any condition that is exacerbated by inflammation can be affected because Celiac Disease is often associated with chronic inflammation. The inflammation from untreated Celiac Disease frequently causes joint pain.

With all the tempting treats of the holidays at hand, you may struggle to make the decision to remain gluten-free. While you are always free to choose that flaky pie crust, it’s only prudent to do so with the knowledge that if you have Celiac Disease, doing so can have a detrimental effect on your health. And now you know!

August 28, 2017

Is It Safe to Graze on These Snacks?

If you must be gluten-free to be healthy, you always have to ask: Is it safe to graze on this? In order to answer that question, I always start with the label. I recently purchased a Graze Dark Chocolate Cherry Tart snack. I was in a hurry, so I saved the label reading for later.
I liked the natural looking package and I absolutely LOVE dried cherries, almonds, and chocolate. These are ingredients that can easily be gluten free and that I often use when I prepare dessert. The only noted allergens on the label are soybeans and tree nuts. Buying this didn’t seem like too big a risk.

When I got home and had time to read the label, I saw that the chocolate buttons include something called “cocoa mass”. I didn’t know exactly what cocoa mass was, but I recognized that it needed to be further investigated. I visited the Graze website.

After visiting the site, I still don’t know what cocoa mass is, but I found this statement located next to the list of ingredients:
Graze is not suitable for people with allergies. All of our food is packed in the same place, so cross-contamination between any of our ingredients is possible. Our snacks may contain traces of gluten, eggs, peanuts, soya, milk, nuts, celery, mustard, fish and sesame.”

This statement appears next to the list of ingredients for each and every product on the website. It’s interesting to note that there’s not enough of some of these allergens to require a notation on the label, but there’s enough for the company to feel it necessary to note their possible presence in the product. I appreciate the fact that they’ve done so in a clear, visible manner.

Where does that leave you?

It’s always safest to err on the side of caution when you encounter an unknown ingredient. I also avoid products that say they are processed on the same equipment as wheat, rye, and barley or may contain trace amounts of these ingredients. If a label does not list any gluten containing ingredients, questionable items, or cross contamination possibilities, I trust that it’s okay to consume even though it may not be labeled gluten-free.
While I like the Graze story of 7 friends who quit their jobs to create better snacks, I cannot recommend these snacks to anyone who is gluten-free. On the other hand, if you’re not limited by the allergens, eat up!

Choose from mixes full of nuts, seeds, dried fruit, superfoods, veggies, and protein. The flavor combinations sound interesting and the packages are easy to carry. Graze has a subscription service, so you can have them delivered right to your door.

If you have celiac disease or gluten intolerance, it’s not safe to graze on these snacks, but you don’t have to miss out on enjoying dried cherries, almonds and chocolate!

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.”