Archive for ‘Education’

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.”

October 2, 2018

Looking Down the Road at Potential Celiac Disease Treatment, Will You be an Early Adopter?

Looking down the road at potential Celiac Disease treatment, will you be an early adopter? It may seem too soon to consider, but it’s possible that in 5 years there will be multiple pharmaceutical treatments or vaccines for Celiac Disease on the market. By the time they are FDA approved, they will have been through clinical trials involving human study participants that indicate the drugs are relatively safe and will most likely work. Once the drugs are approved, will you run to your doctor to request a new treatment, or will you take a wait and see approach?

Some of us love to be on the cutting edge of everything – fashion, interior design, automotive design, technology, everything. Some of us are even willing to pay dearly for the privilege. One of my graphic designer friends bought an Apple Lisa back in the day. He paid about $10,000 for it although he’ll tell you it was about $20,000. That’s $10,000 for a computer with 5MB (not GB) of hard drive space and a 5MHz processor. I regularly email photos that are 10MB.

This friend continued to buy a MAC immediately when a new model appeared. Then he’d scream often as he zapped the PRAM or held the shift key to disable extensions when he was trying to get the buggy system to boot. He’s followed the same pattern with iPhones. When it comes to technology, he understands he’ll pay more and experience less system stability as an early adopter and that’s okay with him.

I tend to wait a bit longer. I’m not on the tail end of adopting innovation, but I like to give companies a chance to work out a few of the bugs before I jump in with both feet. The internet has made it easy to monitor MAC computer system bug fixes. Armed with that information and knowledge of the nature of the bugs, I buy a bit later than my friend. I feel like I experience less downtime, less frustration, and less expense that way.
periodic
When it comes to pharmaceuticals, there’s a whole other level for early adopters to consider – long-term health effects. We often assume that the long-term effects of drugs have been studied before a drug goes to market. That’s not necessarily true. In fact, the more effective a drug is in clinical trials, the less true it may be.

If a drug or vaccine is extremely effective in producing a good outcome, a clinical trial may be ended early. This can mean some side-effects or long-term complications may not show up until after the drug receives approval and is prescribed to patients. There can be a lag in gathering and disseminating information regarding those complications to patients and physicians. The level of risk this presents for patients depends on the specific drug or vaccine.

The FDA website in describing the process of approving drugs states:
“Even though clinical trials provide important information on a drug’s efficacy and safety, it is impossible to have complete information about the safety of a drug at the time of approval. Despite the rigorous steps in the process of drug development, limitations exist. Therefore, the true picture of a product’s safety actually evolves over the months and even years that make up a product’s lifetime in the marketplace. FDA reviews reports of problems with prescription and over-the-counter drugs, and can decide to add cautions to the dosage or usage information, as well as other measures for more serious issues.”

If you’ve watched any network TV recently, you may have seen ads for lawyers representing patients who have received the shingles vaccine Zostavax. Various lawsuits allege the vaccine causes both loss of eyesight and, ironically, shingles. Class action lawsuits have also been filed on behalf of patients who allege they were harmed by drugs including Abilify, Ambien, Avandia, Baycol, Celebrex, Chantix, Crestor, Fosamax, Invokana, Januvia, Lamisil, Lexapro, Lipitor, Pradaxa, Prozac, Ritalin, Serevent, Tekturna, Xarelto, and Zyprexa.

Each of us has to weigh the potential risks and benefits of a recommended medication. If you have life-threatening bacterial pneumonia, the risk of refusing antibiotics most likely outweighs the benefits. If you have prediabetes, the possible risk to your long-term health from medication may not outweigh the benefit of reducing the possibility that you may develop a disease that you may not develop anyway.

With all of that in mind, let’s take a look at the drugs that are being explored for the treatment of Celiac Disease:

BL-7010
An Israeli company owns the rights to a non-absorbable polymer that binds gliadin in the gut and prevents the formation of peptides that trigger an autoimmune response. The drug is not absorbed into the blood and is excreted along with protein from the gut. BL-7010 drug has made it through a Phase 2 clinical trial.

Egg Yolk Therapy
The theory here is that antibodies in the yolk of chicken eggs neutralize gluten allowing people with Celiac Disease to include a little gluten in their diet without suffering symptoms. This therapy would be used alongside a gluten-free diet. It is not believed to be a potential cure.

Larazotide Acetate
Larazotide acetate is an oral peptide that reduces leakiness in the intestines so that gluten doesn’t cross the intestinal barrier and trigger an autoimmune response. It would not eliminate the need for a gluten-free diet, but could lessen the effects of accidental gluten ingestion. Phase 3 clinical trials are being conducted this year.

Latiglutenase
Latiglutenase is a combination of enzymes that was hoped to break down gluten so that damaged intestines could heal. In a Phase 2 clinical trial, participants receiving latiglutenase improved, but so did those receiving a placebo.

The data have now been re-analyzed and scientists believe that latiglutenase may help relieve the symptoms of Celiac patients who are following a gluten-free diet, but still experience discomfort and pain. Last year, the NIH extended a grant for a two-year blind study of latiglutenase. This research will focus on symptom reduction.

Saliva Rothia
There is an enzyme that pulverizes gluten found within a bacterium called Rothia in saliva. Using knowledge of Rothia’s enzyme, researchers found that another bacterium, B. subtilis, produces an enzyme similar to Rothia. Recent research proves that modified subtilisin enzymes adhere to and detoxify gluten in mice. A big plus is that B. subtilis is safely consumed in Japan in the fermented soybean dish natto, making food-based delivery a possibility.

TIMP-Gliadin
TIMP-Gliadin is a compound composed of the protein particle and Toleragenic Immune Modifying nanoParticles. It sounds like the nanoParticles may alter the body’s immune response to gluten, but I can’t be sure. It’s too early to know much about this research.

Nexvax2
This vaccine works much like allergy shots in that a patient develops gluten tolerance through a series of injections. $40 million in funding has been secured for future research and the vaccine will enter Phase 2 clinical trials. The goal of this vaccine is to eventually eliminate the need for a gluten-free diet.

As you can see, the goal of many of these drugs is to reduce or eliminate the effects of accidental gluten ingestion. They would not eliminate the need for a gluten-free diet. Nervax2, BL-7010, and TIMP-Gliadin could possibly achieve the loftier goal of allowing those with Celiac Disease to consume gluten without damaging their intestines.

With these treatments on the horizon, now is a great time to explore whether you are an early adopter, a wait and see type, or someone who is content following a gluten-free diet. The gluten-free diet remains an effective treatment for Celiac Disease as long as you are compliant, so there’s really no wrong answer here. It’s all up to you, your preferences, and your goals!

Waaait, does that make this decision easier or harder? Probably depends on whether you’re an early adopter. I think I’ll wait and see…

https://www.macstories.net/mac/the-lisa/

http://info.cmsri.org/the-driven-researcher-blog/merck-admits-shingles-vaccine-can-cause-eye-damage-and-shingles

https://www.thejusticelawyer.com/practice-areas/detail/dangerous-drugs-medical-devices-list/

http://www.immusant.com/clinical-development/celiac-disease-programs.php

https://www.allergicliving.com/2018/03/14/inside-the-race-for-a-celiac-disease-treatment/

https://www.fda.gov/ForPatients/Approvals/Drugs/ucm405579.htm

https://www.verywellhealth.com/celiac-disease-drugs-in-development-562289

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.”

July 3, 2018

Your Gut Has a Mind of Its Own

If you feel like your gut has a mind of its own, it’s because it does. The billions of neurotransmitters in your intestine are of the same type as those in your brain and house the Enteric Nervous System. The gut is capable of a level of independent intelligence equal to that of your dog.
diet
Does that mean our stomachs can be trained?

It’s kind of a funny idea, but it’s one that’s currently being explored. Some scientists hypothesize that we can treat stomach pain using hypnosis — essentially curing our tummies by talking to them.

The gut is host to 100,000 billion bacteria. When researchers mapped the DNA of one study participants’ microbiomes, they first reported that each of us falls into one of 3 enterotypes.

Subsequent research has called this limited number and the specific characteristics within each type into question. Things may be a bit more nuanced and complicated than originally indicated. Research continues and will bring a clearer picture over time.

We do know that the gut communicates with the brain via the vegas nerve and can affect our emotions. That could be why it feels like the gut has a mind of its own that sometimes controls us.

Ninety-five percent of the seratonin in our bodies is produced in the gut where it regulates the immune system and sets the pace for intestinal transit. Seratonin is also released into the bloodstream acting on the hypothalamus and registering in the upper brain as a sense of well-being.

With conditions like irritable bowel syndrome (IBS) in which there is no observable organic malfunction, it is theorized that there could be a problem between brain and gut communication. One of the brains may send the wrong message or a message may be misinterpreted resulting in the symptoms experienced.

Learning more about this possible process may lead to innovative treatments for the 1 in 10 of us who suffer from IBS. It also has potential benefit for those who have become hypervigilant as a result of trauma.

An examination of the microbiome can increasingly assist in diagnosis and treatment of disease. The microbiome can show a propensity for Type II diabetes, heart disease, and liver disease and may influence obesity. Patients with inflammatory bowel disease (IBD) show an increase in pro-inflammatory molecules and a decrease in inflammatory dampening bacteria. Altering microbial composition could possibly be used to reduce inflammation or calm down the immune system.

Researchers have successfully diagnosed Parkinson’s disease through intestinal biopsy paving the way for additional exploration of the possibility that the gut and brain share diseases. This could be key to a greater understanding of autism spectrum disorders and alzheimer’s disease.

Dr. Michael Gershon, Professor of Pathology and Cell Biology at Columbia University Irving Medical Center who is sometimes referred to as the father of neurogastroenterology has, along with Dr. Anne Gershon, demonstrated that shingles can occur in enteric neurons and may be the cause of several gastrointestinal disorders currently of unknown origin.

It’s a little unclear whether the DNA of a microbiome is a set entity that changes slowly over time or whether researchers were simply mapping a DNA moment in a constantly changing microbiota. Studies have shown that the microbiota can change within one day with a change in diet.

That sounds like great news to me! It’s possible that a change in diet could bring symptom relief fairly quickly once we better understand what in the diet needs to be altered.

The possibilities are huge and the research has just begun. Changing the microbiome through diet, prebiotics, and probiotics may have a much greater effect in preventing and reducing disease than we previously believed. Diet may not just be fuel to keep the body strong, it may be real medicine that can be used to reduce inflammation, revise autoimmune response, and change the messages transmitted from the gut to the brain.

Knowing that my gut has a mind of its own sounds like relief to my upper brain!

https://www.pathology.columbia.edu/profile/michael-d-gershon-md

http://sales.arte.tv/fiche/3707/VENTRE__NOTRE_DEUXIEME_CERVEAU__LE_

http://stm.sciencemag.org/content/1/6/6ra14.short

https://www.mdedge.com/jfponline/article/105514/gastroenterology/targeting-gut-flora-treat-and-prevent-disease

https://www.ncbi.nlm.nih.gov/pubmed/25786900

https://www.pathology.columbia.edu/profile/michael-d-gershon-md