Posts tagged ‘Celiac Disease’

March 11, 2019

I’m Saying Cheerio to Cheerios®!

I’m saying cheerio to Cheerios! In fact, I already have. I don’t plan to ever eat them again. Why? Let me show you…
dh
I’ve been struggling with one of my worst breakouts of dermatitis herpetiformis (DH) in years. By struggling, I mean it’s all I can do not to claw myself until I bleed. I can’t sleep because I itch. I can’t concentrate because I itch. I’m irritable, you guessed it, because I ITCH!

If you have this skin version of celiac disease you know what I mean. There is nothing that itches like this. Sixteen years ago, it was the itchy rash that drove me to the doctor with celiac disease. That wasn’t my only symptom, but it was the one that was hardest to ignore.

Now I am aware I just need to find whatever it is that’s triggering my immune system and stop consuming it. By process of elimination, I finally landed on oats. Since Christmas, I have eaten Glutenfreeda instant oatmeal, Nature’s Path Organic instant oatmeal, and Cheerios. All are labeled gluten-free.

According to glutenfreewatchdog.org, both General Mills and Nature’s Path begin with oats that have been contaminated with wheat, barley, and/or rye. They then mechanically and optically sort the oats to remove the contaminants. General Mills tests and validates the resulting flour, then at the end of the process again tests gluten levels.

In order to label a product as gluten-free, it must contain less than 20 parts per million gluten. In 2015, General Mills recalled 1.8 million boxes of Cheerios and Honey Nut Cheerios due to wheat contamination. One sample in that lot tested at 43 parts per million gluten.

I don’t necessarily believe that another accidental contamination has occurred. It’s much more likely that I encountered a hot spot of contamination in the cereal. This could be true and the tests could still be compliant.

In other words, General Mills is not misrepresenting test results. The question mark comes from the way the contaminants are removed and the tests are conducted.

After contaminants are removed from the oats, Cheerios begin with validated gluten-free flour. This validation is based on the mean test results from a 24-hour production cycle of flour. Once the Cheerios are cereal, the product test is also based on the mean results of a 24-hour production cycle.

Gluten Free Watch Dog describes the protocol for determining a lot mean as:
(As reported to Gluten Free Watchdog and confirmed October 12, 2018)

To arrive at a lot mean for gluten-free Cheerios, the following protocol is followed:
Twelve to eighteen boxes of cereal are pulled during a production cycle or “lot”.
The contents of each individual box are ground.
A sub-sample of ground product is taken from each box.
The sub-samples are composited—meaning they are combined.
The combined sub-samples are subject to additional grinding.
A minimum of six, 1-gram sample extractions are taken from this combined, ground sample (Note, formerly this was a minimum of twelve, 0.25-gram sample extractions).
Extractions are tested using the Ridascreen Fast Gliadin (R7002) and cocktail extraction solution.

Once the product is ground and mixed, the test is no longer necessarily giving an accurate representation of what may be in your spoon or bowl. It is also worth noting that the number of samples taken decreased from 2015 to 2018.

Testing protocols like this could help explain why a study published in The American Journal of Clinical Nutrition in 2018 found that celiac patients adhering to a gluten-free diet typically consume up to 244mg of gluten per day. The study estimated the average inadvertent exposure to be 150–400mg using a stool test and 300–400mg using a urine test.

This inadvertent exposure is significant. A mere 15mg can cause symptoms in some of us. The damage underlying the symptoms undermines our attempts to be healthy. We certainly don’t spend our time reading labels, asking uncomfortable questions, missing out on our favorites, and enduring eye rolls just to end up ingesting gluten anyway. It is disheartening to know that labels may not present an accurate representation of the amount of gluten contained in food.

Of course, packaged foods are not the only source of gluten contamination. Restaurant food is a gamble as well. Some kitchens are better than others at avoiding cross-contact.

No matter how much awareness of gluten sensitivity increases, there is an ever-evolving question regarding the best way to navigate everyday life and avoid gluten. It isn’t realistic to think I can grow my own gluten-free grains, nuts, and seeds and grind my own flour. It is too isolating to never consume restaurant food.

I can cook the majority of my food at home. I can observe adverse reactions to specific foods. I can research sources of oats and testing protocols. I can eliminate Cheerios.

Due to my recent experience, I will no longer purchase “gluten-free” oat products that come from known contaminated sources. That means the remaining Nature’s Path oatmeal in my pantry is being donated. Once this round of DH heals, I will try Glutenfreeda oatmeal again…maybe. The memory of this itching will have to fade first.

The good news is, my rash is diminishing and I learned something about gluten-free oats. I cannot go backward. I must trust that my body will heal as miserable as I may be while it does.

I could have chosen to visit a dermatologist who may have prescribed Dapsone. That approach might have given me temporary relief, but once I quit eating Cheerios, I was better as quickly as the rash would have responded to the prescription. For me, a long-term solution is worth the time it takes to find it. You may not feel the same.

Each of us has unique tolerance levels, priorities, and health goals. We have to find the balance that works for us. Information is critical to finding that balance.

Now that I know more, I’m saying cheerio to Cheerios!

https://www.glutenfreewatchdog.org/news/updated-testing-protocol-from-general-mills-for-labeled-gluten-free-cheerios/

https://www.cheerios.com/our-gluten-free-process/

https://www.allergicliving.com/2015/10/06/gluten-free-labeled-cheerios-recalled-due-to-wheat-contamination/

https://www.glutenfreewatchdog.org/news/oats-produced-under-a-gluten-free-purity-protocol-listing-of-suppliers-and-manufacturers/

https://academic.oup.com/ajcn/article/107/2/201/4911450

https://consumer.healthday.com/diseases-and-conditions-information-37/celiac-disease-962/one-third-of-gluten-free-restaurant-foods-in-u-s-are-not-study-738383.html

http://www.cooking2thrive.com/blog/dermatitis-herpetiformis-leaves-little-rough-around-edges/

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.”

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.