Posts tagged ‘dermatitis herpetiformis’

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.”

April 25, 2016

I Can See Clearly Now

Luckily, I can see clearly now – even when I play 2048 obsessively on my phone. In the years just prior to adopting a gluten-free diet, I suffered from many symptoms. One of those was dry eyes. When I woke up each morning, it felt like I had gravel in my eyes. I could no longer command my eyes to water at will. I sometimes asked a colleague in my office to tell me a sad story so I could cry and make my eyes feel better.
fingerglasses
I tried every over-the-counter eye drop I could find. Some didn’t work at all. I was allergic to others. My opthalmologist explained to me that my eyelids were sticking to my eyes and causing little abrasions. That sounded bad and felt awful. She insisted I use RESTASIS®. I complied.

As I struggled to get a diagnosis for my constant aching, itchy rashes, tummy pain, diarrhea, and weakness, I began to include dry eye in my research. I discovered Sjogren’s Syndrome. This autoimmune disease affects an estimated 1 in 10 dry eye patients.

It often occurs alone, but can also occur along with other autoimmune diseases like celiac, lupus, rheumatoid arthritis, or scleroderma. As I began my gluten-free experiment, I was curious whether healing my gut would have a positive effect on my dry eye. My opthalmologist and I designed a plan to wean me off RESTASIS® so I could find out.

Like the itchy rashes caused by my dermatitis herpetiformis, the improvement in my eyes on a gluten-free diet has followed a much slower and sporadic path than the quick reduction in muscle pain & weakness, stomach pain, and other intestinal symptoms I experienced. My increased use of electronic devices hasn’t helped. While my eyes are still on the dry side, they are much improved as evidenced both by the way they feel and by my optometrist’s observation during yearly exams.
water
What I’ve discovered along the way is that overall hydration is important. When I drink too much tea or not enough water, I notice a difference. Wearing mascara of any sort results in drier eyes. And I’ve learned that I can supplement the eyes’ self-cleaning action by using eye wash once or twice a day. By making choices to support eye hydration, I had reached a level of adequate hydration with only occasional annoyance, but I can see more clearly now.

Recently, I found an eye cleansing yoga routine and decided to give it a try. It’s a simple set of eye movement exercises plus a period of time breathing while staring at a candle flame or small object about 24 inches in front of the eyes. As I stare and try not to blink, my eyes begin to water in the same manner I was previously able to command them to water at will.

After a few of days of this practice, I decided to try the staring technique while working. I stopped what I was doing, stared at an icon on my computer screen, and boom-bada-boom, it worked. My eyes began to water. I’m thrilled to have another simple solution at my disposal. I can see clearly now, can you?


http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275

http://www.healthandyoga.com/html/news/meditation/trataka.aspx

September 15, 2015

Dermatitis Herpetiformis Leaves Me A Little Rough Around The Edges

pineapple
This pineapple may be a little rough around the edges, but it’s also totally cute! In fact, it was the best find of my grocery shopping trip this week. Since then, every time I get dressed and feel the roughness on the back of my elbows I like to think of this pineapple. Why? Well, I have dermatitis herpetiformis (DH) – a skin manifestation of celiac disease, which sometimes leaves me rough around the edges. Thinking of this adorable pineapple reminds me that this annoying and ugly rash doesn’t prevent me from being the highlight of a meeting, the life of the party, a creative soul, a compassionate person, a smart cookie, or even a cutie pie.

elbow

DH on my elbow today.


I’m not saying I love having DH, but I am grateful that my long-term gluten-free lifestyle means that when it appears now it barely itches. In fact, now I often don’t notice the rash on my elbows until I run my hand across it when applying lotion. This wasn’t even close to true in the days when I consumed gluten. At that point, my rash was so unbearably itchy it required intense concentration at all times to keep from clawing at it. Sometimes I still couldn’t resist. It was driving me crazy!

I mean, it was seriously distracting. I had inflammation, pain, weakness, severe gastrointestinal symptoms, and my hair was falling out, yet the thing that drove me to the doctor was that itch. If you’ve had it, you understand why. If you haven’t there’s no way to express how pervasive it is. In spite of the fact that my case was a classic presentation, my doctor never considered celiac disease as a possible diagnosis. He prescribed an antihistamine and sent me on my way.

It was a long road from that point to one where I began healing. Looking back, I’d say the symptoms had been gradually increasing for at least 10 years. I know that the length of time it takes in the US to get a celiac diagnosis has dropped from 11 years to 4 years, but 4 years is a very long time to spend with a sixfold greater likelihood of death. Four years is a long time to deal with unnecessary daily pain, weakness, malaise, diarrhea, or the itchiest rash in the universe!

It’s become quite popular to debunk the benefits of a gluten-free diet for anyone other than the diagnosed celiac. While that might seem prudent if more than 17% of the 3,000,000 estimated celiacs in the US had been diagnosed, it is a bit presumptive at this point in history and it discourages people from trusting what their body is telling them. While I know that some of the self proclaimed gluten-free community is ill informed (as Jimmy Fallon discovered: https://www.youtube.com/watch?v=AdJFE1sp4Fw), perpetually whiny, or over promotes itself, it’s worth pausing a moment before discouraging or challenging someone’s dietary choices. It could be that they feel on the inside like I felt on the outside when this rash, triggered by the iodine in radioactive dye used for a CT scan, covered 2/3 of my body.
DHSM

As you can see, I was more than a little rough around the edges. If someone is feeling like that on the inside, I just want them to feel better, don’t you?

{}

Resources
http://www.celiac.com/articles/22028/1/Increased-Mortality-Rates-for-Celiacs/Page1.html

http://www.cureceliacdisease.org/wp-content/uploads/2014/06/CeliacDiseaseFactsAndFigures0614.pdf

http://sciencelife.uchospitals.edu/2014/02/05/dr-faq-stefano-guandalini-on-the-rise-of-celiac-disease/