The Risks of Cheating


This article originally appeared in our January 2016 newsletter. Due to the [unexpected] overwhelming positive feedback, I decided to improve it and post it here.

I hope you find it helpful.

Stay strong & keep moving forward.

Alan Klapperich
GIG of ECW Branch Manager




cartoon-sick-face-md
Currently, a gluten-free diet is the only medical treatment for those with gluten-related disorders. There are no alternative treatment options - no shots, no drugs, no surgeries. However, several pharmaceutical companies are working on treatment options, but they are years - if not decades away from being prescribed by your physician.

While many find it a blessing their condition can be controlled by a "simple diet" change, others consider it a curse of biblical proportions. It's no secret, transitioning to the gluten-free lifestyle can be tough.
[Notice the word - lifestyle. The changes required go far beyond just diet.]

A new lifestyle requires the desire to change, knowledge of how to make the change, and the dedication and motivation to stay the course. Yes, it's quite a departure from the previous lifestyle of eating anything from anywhere at anytime.

Barriers to Compliance

When it comes to dietary compliance for the gluten-free diet, there are many barriers that must be broken down:
  • Time constraints for cooking or preparing food
  • Misinformation
  • Lack of knowledge or education (label reading, recognizing gluten)
  • Lack of cooking skills
  • Ability to manage emotions: depression, anxiety, fear
  • Ability to resist temptation
  • Feelings of deprivation
  • Gluten-Free food availability (may be hard to find)
  • Financial restrictions (GF diet can be expensive)
  • Social pressures
  • Peer pressures
  • Travel
  • Lack of symptoms
  • Effectiveness of the diet (it doesn’t appear to help)

This list seems almost endless, but unfortunately it's still incomplete.

It seems that removing gluten is easier said than done. Give up the foods that you’ve been eating for your entire life? That’s crazy talk!


"I need gluten. I can't live without gluten!"

Ironically, a heroin addict might say something very similar. This is not surprising since narcotics and gluten are addictive. Yes, let’s add "addictive" and "withdrawal symptoms" to the barriers of compliance list.

Addictive? Withdrawal? Seriously?
Yes, yes, and yes. Read on Macduff…


A String of Addictive Pearls

gliadin mapping fasano

Think of gluten as a string of pearls that must be broken down into individual pearls [known as amino acids].

Humans do not have the enzymes to completely break down gluten into individual amino acids.

Large fragments [known as peptides] of undigested gluten remain after digestion.

Some of those peptides are known as
gluteomorphins.

Due to
increased intestinal permeability [also known as "Leaky Gut"], the gluteomorphins pass through intestinal wall and enter the blood stream.

Gluteomorphins react with the opiate receptors in the brain, just like heroin and morphine.

This reaction creates a craving - generating the desire for more of the substance.

~oOo~

Julianne Taylor, RN at PrimalDocs.com offers up a great explanation on how gluten creates an autoimmune reaction. http://bit.ly/1Pgh6QA

….and now, back to our regularly scheduled article…




Complications of Untreated Celiac Disease

While it may be easy to rationalize away gluten cheats as simple, temporary aches and pains or as minor [major] inconveniences - beneath the surface, your body could be gearing up for a civil war that would put Gettysburg to shame.
pacman copy


A
2015 study published by The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) found that 75.5% of the study participants had adequate gluten-free diet adherence.

So what about the other one-fourth (24.5%)? They may be setting themselves up for additional [often serious] medical conditions.

Some of the possible complications of cheating:

  • Increased risk of heart attacks & stokes
  • Increased risk of blood clots & Deep Vein Venous Thrombosis (DVT)
  • Heart muscle damage
  • Heart rhythm problems
  • Coronary Artery Dissection
  • Anemia
  • Bone loss
  • Cancers
  • Ulcerative jejunitis
  • Collagenous sprue
  • Depression
  • Malnutrition
  • Neurological disorders
  • Infertility
  • Miscarriage
  • Increased risk of triggering additional associated autoimmune conditions
To learn more about the above list, please check out the following links:

Cheating on a Gluten Free Diet? Increased Serious Risks May Occur
by Linda J. Dobberstein, DC
http://bit.ly/1TDnOnE

7 Serious Complications of Untreated Celiac Disease
by Sarah Patrick
http://bit.ly/1OyRQZE


Complications of Untreated Non-Celiac Gluten Sensitivity

Think you can escape the risks because you have non celiac gluten sensitivity? Sorry, gluten can still rear its ugly head with the likes of:
  • Eczema
  • Psoriasis
  • Depression
  • Peripheral Neuropathy
  • ADHD
  • Multiple Sclerosis
  • Ataxia
  • Diabetes
  • Amyotrophic Lateral Sclerosis (Lou Gerhig's Disease)
  • and potentially much more

To learn more about the above list, please check out this link:

3 Reasons Gluten Intolerance May Be More Serious Than Celiac Disease
by Chris Kresser, M.S., L.Ac
http://bit.ly/1n5wysf



ChChChChanges in Behavior


"Change is not measured in leaps and bounds but in the small steps we take toward a larger goal." ~Claire Dorotik-Nana LMFT


The
Barriers to Compliance list above consists of things we can control and things we cannot control. Fear not, this lack of control does not a victim make.

The good news - we get to choose how we react in those situations; if we don't like it - we can change it.

The bad news - change is not always easy and requires effort.

The links below offer some information on how to make the changes that can lead to healthier, happier lives.

The Stages of Change
by Kendra Cherry
http://abt.cm/1ZxH2wA

This article explores one of the many theories of how change occurs. The Stages of Change model demonstrates that change is not always easy and often requires "baby steps" toward the ultimate goal.

"Understanding the elements of change, the stages of change, and ways to work through each stage can help you achieve your goals"




5 Steps to Changing Any Behavior
by Alex Lickerman, MD

http://bit.ly/1PCurD7

Dr. Lickerman's article also explains the Stages of Change model. He shares some wise words:

"Always remember: none of us was born with any habits at all. They were all learned, and can all, therefore, be unlearned. The question is: how badly do you really want to change?"




NursingTimes.net Vol 107 No 23 06/11/2014 - "Healthier lifestyles: behaviour change"
by Nicola Davies
http://bit.ly/1JPubUJ

Not necessarily a "how to" piece, but excellent background information is presented. This article is written for nurses and how to best help their patients, but patients can benefit from it as well. It looks as the many factors that influence health-related behaviors as well as several different behavior changing models. Find the method that works best for you.

"Unhealthy lifestyle choices such as smoking and poor diet are significant and preventable causes of long-term conditions. Nurses are well placed to encourage and support patients to make healthy choices. Through good communication, collaboration and goal-setting, behaviour change is possible. This article discusses evidence for the best ways to initiate and sustain behaviour change."




How to Withstand Food Peer Pressure
by Karen Diaz, RD
http://huff.to/1OMFmKx

This article does not directly address gluten-free, but it does offer some valuable tips to help combat the pressures that exists.

When you are trying to listen to your body, food peer pressure can be the last straw making you throw in the towel. Here are four important ways to withstand food peer pressure.



Celiac Disease: 10 Things Every Gastro Should Know

logo2014

Celiac Disease: Ten Things That Every Gastroenterologist Should Know

An excellent article published in August 2015 Clinical Gastroenterology and Hepatology by Amy S. Oxentenko and Joseph A. Murray

Please share this with your healthcare provider!

Text Article:
http://www.cghjournal.org/article/S1542-3565(14)01053-2/fulltext
PDF:
http://www.cghjournal.org/article/S1542-3565(14)01053-2/pdf

Article Outline

  • 1. How to Use Serology to Diagnose Celiac Disease Practical Suggestion
  • 2. Can Celiac Disease Be Recognized Endoscopically?
  • 3. What Biopsies Should Be Taken to Evaluate for Celiac Disease?
  • 4. Which At-Risk Patients Should Be Tested for Celiac Disease?
  • 5. How Does One Evaluate for Celiac Disease in a Patient on a Gluten-Free Diet?
  • 6. How Is Celiac Disease Managed?
  • 7. What Should Be Assessed in the Patient With Newly Diagnosed Celiac Disease?
  • 8. How Are Adherence and Response to a Gluten-Free Diet Measured?
  • 9. What Is the Approach to the Nonresponsive Celiac Patient?
  • 10. What Do We Do With Refractory Celiac Disease?

"Celiac disease (CD) is increasingly common and topical for both the general and medical communities; therefore, gastroenterologists will be called on for expertise in this area. How CD is diagnosed has changed over time, and confusion abounds regarding the use and interpretation of diagnostic tests, which are often confounded by adoption of the gluten-free diet (GFD). Herein, we address 10 important things that gastroenterologists need to know about CD, which are based on current evidence and our experience in Mayo Clinic’s Celiac Disease Clinic."

"There are 10 things that all gastroenterologists should know about celiac disease (CD).

  • 1 - The immunoglobulin A tissue transglutaminase is the single best serologic test to use for the detection of CD.

  • 2 - CD can be recognized endoscopically, and water immersion enhances villi detection, although a normal endoscopic appearance does not preclude the diagnosis.

  • 3 - It is recommended that 4 biopsies be taken from the second part of the duodenum and 2 bulb biopsies be taken at the 9 o’clock and 12 o’clock positions to maximize the sensitivity for histologic confirmation of CD.

  • 4 - Consider serologic testing of first-degree relatives, patients with type 1 diabetes mellitus, Down’s, Turner’s, and Williams’ syndromes, as well as those with premature osteoporosis, iron deficiency, abnormal liver biochemistries, and other manifestations of CD.

  • 5 - Patients already on a prolonged gluten-free diet (GFD) should be tested for the presence of HLA DQ2 or DQ8, thereby avoiding the need for further evaluation of CD in non-allelic carriers.

  • 6 - The basic treatment of CD is a strict, lifelong GFD, enabled by an expert dietitian.

  • 7 - Newly diagnosed adults with CD should be assessed for micronutrient deficiencies (iron, B12, folate, zinc, copper), fat soluble vitamin deficiencies (vitamin D), and bone densitometry.

  • 8 - All patients diagnosed with CD should have clinical follow-up to ensure response and adherence to a GFD.

  • 9 - In those with persistent or relapsing symptoms, the robustness of the original diagnosis should be reviewed, gluten exposure sought, and a systematic evaluation for alternative and associated diseases performed.

  • 10 - Evaluate those with refractory disease for malignant transformation."

Celiac Disease Screening Round Up

Syringe
A collection of links about screening/testing for celiac disease. These links will list and describe the blood work needed to screen for celiac disease.

Updated 03/02/17


Beth Israel Deaconess Medical Center - Celiac Center




Children's Clinic and Allergy Centre - Dr. Rodney Ford

Gluten Blood Tests. An excellent description of blood tests!
http://drrodneyford.com/faq/bloods-tests/gluten-blood-tests.html



University of Chicago - Celiac Disease Center

Screening for Celiac Disease
http://www.cureceliacdisease.org/screening/



Celiac Disease Foundation (CDF)




Celiac Support Association (CSA)




Gluten Intolerance Group of North America (GIG)




HealthNow



Mayo Clinic - Mayo Medical Laboratories

"Laboratory algorithms using a reflex approach provide an alternative to ordering individual tests when evaluating a patient with suspected celiac disease. The goal of algorithms is to provide the most appropriate selection of tests for each patient, while maintaining the highest possible sensitivity and specificity."

An excellent resource for patient and doctor.

http://www.mayomedicallaboratories.com/articles/features/celiac/



National Foundation of Celiac Awareness (NFCA)




Spectrum of gluten-related disorders: consensus on new nomenclature and classification

This 2012 consensus statement was created by 15 of world's experts on Gluten-Related Disorders.

http://www.biomedcentral.com/1741-7015/10/13

Diagnostic Flowchart (including blood tests names)
http://www.biomedcentral.com/1741-7015/10/13/figure/F4

PDF version. This is great handout to give to your healthcare professional.
http://www.biomedcentral.com/content/pdf/1741-7015-10-13.pdf



Non-Celiac Gluten Sensitivity: The New Frontier of Gluten Related Disorders

A 2013 followup to 2012 consensus statement. The experts bring us up to date with what they've learned.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820047/

PDF Version. Include this in your handout to your healthcare professional.
http://bit.ly/29baTsg



03/02/17 - Added Mayo Labs link
07/02/16 - Added 2013 The New Frontier of Gluten-related Disorders
05/21/16 - Fixed broken links
07/24/15 - Added HealthNow link

Mood, Behavior, Mental Illness and Gluten

mood & gluten
GIG of ECW Newsletter Article - September 2014

This article was originally titled “Schizophrenia and Gluten”, however shortly after I started writing, the news of Robin Williams' suicide rocked the world. This news hit home on many levels for me. I greatly enjoyed his work. At one time I had committed sizable sections of his standup routine to memory. I was in awe of his comedic genius; how quickly his mind worked and the staggering number of references to people, places, and events he was able to weave together. He was a caring and generous man.

I am not saying Mr. Williams' problems were connected to gluten, however one cannot help but wonder if removing gluten would've/could've helped him. He was wrestling many demons -
Lewy Body Dementia, and early stage Parkinson's.

"The terrorist inside my husband's brain"
by Susan Schneider Williams, BFA

An open letter from Susan Williams to Neurology - The Official Journal of the American Academy of Neurology. She describes their struggle with Lewy Body Dementia.

An excellent read!

Read More:
http://bit.ly/2ehdWVQ


The intent here is not to bore you with medical mumbo jumbo [WARNING: medical mumbo jumbo lies ahead], but the take-away here is simply this:

Gluten has been shown to affect mood, behavior, and cognitive function.


"The gut is not like Las Vagas. What happens in the gut, does not stay in the gut."

~ Dr. Alessio Fasano


Remember, gluten can affect any and every organ in the human body – the brain and nervous system are not exempt – even without the presence of celiac disease. Science & medicine are discovering more connections as time goes on.

The statistics for mental illness in the United States are staggering.
  • One in four [25%] adults experience mental illness in a given year.
  • One in 17 [approx 6%] live with serious conditions like: schizophrenia, major depression, bipolar disorder.
  • Approx. 1.1% of adults live with schizophrenia.
  • Suicide is the tenth leading cause of death in the US (more common than homicide) and third leading cause for ages 15 to 24 year olds.
  • More than 90% of those who die by suicide had one or more mental disorders
  • In 2010, the Center for Disease Control reported 38,364 suicides per year – about 14% more than motor vehicle crashes.
  • $193.2 billion – Lost earnings per year due to mental illness.
  • Veterans account for 20% of suicides. 22 per day.
  • Mood disorders (like depression) are the third most common cause of hospitalization for youth and adults 18 to 44.
You can find more mental illness statistics in this document from National Alliance of Mental Illness: http://bit.ly/1sMndpF

After looking at those statistics, sadly, I suspect just about every family has had some experience with mental health issues in some form, be it directly or indirectly. I am no exception. My father was a diagnosed Paranoid Schizophrenic. Like many, he was not compliant with his medication regimen nor did he seek on-going professional help. The consequences of his choices are still rippling outward today, almost 44 years after his suicide. I will always wonder if removing gluten would've altered our family's history; without question it has altered my future.

Most mainstream medical professionals do not associate gluten with neurological/behavioral disorders. This is unfortunate because Dr. Marios Hadjivassiliou, Professor of Neurology at Sheffield, UK Teaching Hospitals, stated in 2002,“Gluten sensitivity can be primarily and at times exclusively a neurological disease.”
http://bit.ly/1qXJdf3

Dr. Hadjivassiliou has done extensive work with a neurological condition called Gluten Ataxia. This condition is characterized by the loss of balance and coordination, visual disturbances, tremors, difficulty in walking. Living Without Feb/March 2011 has an excellent article on this topic -
http://bit.ly/1u24c0q

Dr. Hadjivassiliou is not alone in his discoveries. Dr. Rodney Ford, a Pediatric Gastroenterologist/Allergist from Christchurch New Zealand, wrote this medical hypothesis paper in 2009 titled - “The Gluten Syndrome: A Neurological Disease” -
http://bit.ly/1tkM58j


“Gluten can cause neurological harm through a combination of cross reacting antibodies, immune complex disease and direct toxicity. These nervous system affects include: dysregulation of the autonomic nervous system, cerebella ataxia, hypotonia, developmental delay, learning disorders, depression, migraine, and headache. If gluten is the putative harmful agent, then there is no requirement to invoke gut damage and nutritional deficiency to explain the myriad of the symptoms experienced by sufferers of celiac disease and gluten-sensitivity. This is called ‘‘The Gluten Syndrome”

~ Dr. Rodney Ford.



Dr. Ford has devoted an entire book on the subject of gluten's effect on our brains. I highly recommend “Gluten Brains” -
http://bit.ly/GlutenBrains

“Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity”was published in Psychiatric Quarterly in March 2012 and contains a great summary of a variety of gluten-related conditions.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/


Neurologic Complications include:

  • Gluten Ataxia
  • Epilepsy and Seizure Disorders
  • Peripheral Neuropathy
  • Inflammatory Myopathies
  • Myelopathies
  • Headache
  • Gluten Encephalopathy (Brain Damage)
  • White matter abnormalities

Psychiatric Complications include:

  • Anxiety Disorders
  • Depression and Mood Disorders
  • Attention Deficit-Hyperactivity Disorder (ADHD)
  • Autism Spectrum Disorders
  • Schizophrenia


Depression

Depression is a medical condition that interferes with daily life; affecting thoughts, feelings, behavior, mood and physical health for extended periods of time. Some people may only have one episode of major depression in their lifetime, but often times it is a recurrent issue.

In celiac disease, nutritional deficiencies from intestinal damage may also contribute to depression. Lack of B-vitamins, specifically B-12 and folic acid have been linked.

Reports of depression in those with celiac disease began appearing in the 1980s. In 1982, a Swedish study reported “Our results suggest that depressive psychopathology is a feature of adult coeliac disease and may be a consequence of malabsorption”
http://1.usa.gov/W3jKEB

A 1998 study shows about one third of diagnosed celiac patients also suffer from depression. Celiac adolescents have higher than normal rates of depression (31% vs 7% of adolescents without celiac).
http://bit.ly/1qUGi2S

A large Swedish study published in 2007 compared almost 14,000 celiac patients against almost 67,000 healthy people. Researchers found that celiacs are 80% more likely to experience depression than the general population. They also looked at the celiac-depression relationship in reverse. They found those with depression had a 230% increased risk factor of having celiac disease.
http://1.usa.gov/1pApGlN

Women with celiac disease have higher rates of depression than the general population. The risks were highest in those that were not compliant with the gluten-free diet. Even when compliant, women still had higher risks of depression over those without celiac.
http://bit.ly/W3nKoE

According to Dr. Tom O'Bryan, children have a 40% increase risk of suicide. Those children with intestinal inflammation [no villi damage yet] have a 96% increased risk.
http://bit.ly/1rJ7wjo

Adults diagnosed with celiac disease and/or intestinal inflammation have increased suicide risks as well. Another large study published in 2011 from Sweden shows those with with celiac disease [intestinal damage] had a 55% increased risk factor. Those with intestinal inflammation [no villi damage] had a 96% increased risk.
http://1.usa.gov/Z4DFFk

More Gluten & Depression Studies

“A study has now demonstrated that gluten is independently associated with depression in patients with NCGS.” -
http://1.usa.gov/1tZiAqc

“Exposure to gluten specifically induced current feelings of depression.” -
http://1.usa.gov/1ucfDBZ

“Lifetime depressive symptoms may be present in one third of the CD patients who adhere to gluten-free diet. Long-term adherence to the gluten-free diet may reduce the risk of current depressive symptoms.” -
http://1.usa.gov/1qqWZpe


Schizophrenia

Schizophrenia is a brain disorder that distorts thinking, behavior, emotions, the perception of reality. Delusions [believe people are try to control them or plotting against them] and hallucinations [hearing voices] are common symptoms.

There have been observations of Schizophrenia and gluten dating back to the 50's & 60's – also known then as “Bread Madness”.

In 1953 Dr Lauretta Bender started seeing increased incidences of celiac disease in those with childhood schizophrenia.

In 1961 Harold Graff, M.D. and Allen Handford M.D. published the case study, “Celiac Syndrome in the Case Histories of Five Schizophrenics”, about five patients with a history of schizophrenia and celiac disease who happened to be admitted to the same psychicatric hospital over the course of 365 days. A most curious observation in facility that had few admissions over the course of a typical year.
http://bit.ly/1uFm56w

Dr. F. Curtis Dohan spent most of his career drawing connections between wheat and schizophrenia. He too noticed a number of patients with schizophrenia also had celiac disease – potentially 50 to 100 times the rate that would be expected by mere chance. Beyond these connections, he reported that a gluten-free diet improved some of the newly diagnosed schizophrenics, but not all. 2 out of 17 improved.
http://bit.ly/1nhCHLw

In 1966 Dohan published “Wheat Consumption and Hospital Admissions for Schizophrenia During World War II”. He anaylzed the the decreases in hospital admissions for schizophrenia during the wheat shortages in Finland, Norway, Sweden, Canada and the United States during World War II.
http://bit.ly/1q0nRxU

Like many pioneers in their field, Dohan was often ridiculed and marginalized for his work [opioid research in mental illness], but he continued publishing his findings. Dohan also demonstrated that schizophrenia was almost non-existant in South Pacific cultures where little to no grains were consumed. When those cultures began to westernize their diet with the consumption of wheat, barley beer, and rice, the prevalence reached European levels.
http://1.usa.gov/1wYpKja

Did Dohan find a “scientific smoking gun” linking gluten and schizophrenia – not exactly according to some experts, but his work is now proving to be quite interesting and now beginning to be validated.

It has only been over the last decade or so that experts have shown gluten's effects on the nervous system. Even to this day experts are still looking indisputable evidence connecting the two conditions.

In 2012, another study revealed that people with schizophrenia are much more likely than the general population to have an immune response to gluten. When those with schizophrenia and a documented immune response to gluten tried a gluten-free diet, they got better. These results are very promising for those suffering from a neuro-degenerative condition where little else works.

Not everyone with schizophrenia will see improvements on a gluten-free diet. New research is indicating about 20% may experience measurable improvements. Dr. Alessio Fasano's team have found that roughly 1 in 5 patients with schizophrenia have elevated levels of tTG6 (a new marker indicating gluten-sensitivity). Those patients put on a gluten-free diet were able to control their condition without medication. Promising results indeed!

More Gluten & Schizophrenia Studies

“Gluten Sensitivity and Schizophrenia” a PowerPoint presentation by Deanna Kelly, Pharm.D, BCPP Professor of Psychiatry at Univ. of Maryland School of Medicine.
http://bit.ly/2f4x8pv

“Emerging scientific literature contains several reports linking gluten sensitivity states with neuropsychiatric manifestations including autism, schizophrenia, and ataxia.”
http://1.usa.gov/1tkxTvQ

“A drastic reduction, if not full remission, of schizophrenic symptoms after initiation of gluten withdrawal has been noted in a variety of studies. However, this occurs only in a subset of schizophrenic patients.” -
http://bit.ly/2kIpUtQ

“Five biomarkers of gluten sensitivity were found to be significantly elevated in patients with non-affective psychoses (schizophrenia) compared to controls.” -
http://1.usa.gov/1vXlWL1


Al Klapperich
Branch Manager
Gluten Intolerance Group of East Central WI


Updated: 02/12/17 - Fix broken schizophrenia study linkUpdated: 11/05/16 - Updated Deanna Kelly's presentation link.
Updated: 10/09/16 - Add Susan William's letter.


Gluten Contamination Eliminiation Diet

“Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients”

BMC Gastroenterology 2013, 13:40 -
http://bit.ly/12vSGuD

Researchers at Johns Hopkins and Center for Celiac Research at Massachusetts General looked at cross contamination of gluten-free products found in a traditional gluten-free diet. They studied 17 patients who had Non Responsive Celiac Disease (NRCD). 6 of these patients met the criteria for Refractory Celiac Disease (RCD).

NRCD is a general classification term for patients with persistent symptoms and/or intestinal damage despite following a gluten-free diet.

RCD is a subset of NRCD. RCD is found in adults; middle-aged to elderly. It's never seen in children. In most cases, failure to improve on a gluten-free diet is not RCD. RCD is also further broken down as RCD1 and RCD2. RCD2 has a higher risk of developing intestinal cancer and 5 year death rate of 50-60%.

Participants of this study were put on a Gluten Contamination Elimination Diet (GCED) for three to six months. This diet consists of whole, unprocessed foods. It was designed to eliminate exposure to any possibility of gluten cross contamination from packaged/processed foods – including those labeled gluten-free. Patients were given sample menus and were asked to keep a food record.
Foods used in the study
Allowed Not Allowed
Grains - Plain, unflavored, brown and white rice Grains - Millet, sorghum, buckwheat or other inherently gluten-free grains, seeds, or flours
Fruits/Vegetables - All fresh fruits & vegetables Fruits/Vegetables - Frozen canned or dried
Proteins - Fresh meats, Fresh fish, Eggs, Dried beans, Unseasoned nuts in the shell. Lunch meats, Ham, bacon, Other processed, self-basted or cured meat products
Dairy - Butter, yogurt (unflavored), milk (unflavored), aged cheeses Dairy - Seasoned or flavored dairy products, Processed cheeses
Condiments - Oils, vinegar, honey, salts Condiments - Flavored and malt vinegar
Beverages - 100% fruit/vegetable, Gluten-free supplemental formulas, Gatorade, milk, water  


The study revealed some interesting results.

  • 14 of the 17 patients experience resolution of their symptoms and normal blood/biopsy results on the GCED.

  • 11 of the 14 successfully returned to a traditional gluten-free diet without return of symptoms.

  • Of the 3 patients that could not return to traditional gluten-free diet - one had a return of symptoms each of the three times they tried to return.

  • 5 of the 6 patients with RCD has full resolution of their symptoms and no longer met the criteria for RCD

The important take away from this study has to do with ferreting out those that truly have Refractory Celiac Disease. Due to the seriousness of RCD, it is important accurately diagnose this condition.

The researchers found it interesting that 79% of the test subject were able to return to their traditional gluten-free diet.

“Interestingly, the fact that the majority of the patients in our study were subsequently able to return to their previous strict GFD suggests that there is a degree of recovery that, once established, shifts these patients back to a more typical threshold of gluten reactivity.”


While the researchers commented on the ability to return to a traditional gluten-free diet, they didn't really discuss this aspect. It certainly raises several questions.

1) Once healed, why where most patients able to resume the traditional GF diet?

Dr. Tom O'Bryan's mantra “Heal the gut, heal the gut, heal the gut” comes to mind.

2) Long-term will they be able to remain on a traditional GF diet without further complications?

3) Could those now successfully following a traditional GF diet benefit from the GCED?

Any reduction [or complete elimination] of processed/packaged foods is beneficial. It gives us the ability to go from gluten-free to gluen-zero.



Better living thru Gluten-Free Chemistry

Updated 10/19/2016

In January I had to re-enter the world of pharmaceuticals [much to my displeasure, but best for my long term health]. If you think determining the gluten-free status of food is difficult, try doing it with prescription medications! It's difficult at best to determine it by reading the ingredient label, and getting a pharmaceutical company to say if their product is gluten-free is like pulling teeth. Ugh...

The Food Allergen Labeling Consumer Protection Act of 2004 [FALCPA]
requires packaged food items to declare wheat and other allergens, but medications do not fall under the umbrella of the FDA's rulings.

Medications contain the active ingredient, but generally it needs to combined with something else - something called an excipient.

What's an excipient?

It's a pharmacological term used for an inert substance that acts as a carrier for the actual drug itself [the "active ingredient"]. Excipients are also used as a filler to bulk up formulations to ensure proper and accurate dosages and as a binder [pill form].

For an extensive list of excipients, see
glutenfreedrugs.com Excipients List; complete with descriptions.

Drugs.com has an excellent
Inactive Ingredients page. Does not address gluten, but very in-depth explanations of each item.

Starches found in medications can include:

Corn (most common)
Caramel Coloring*
Dextrates*
Dextrin*
Dextrimaltose*

Maltodextrin*
Modified Starch*
Potato
Pregelatinized Starch*
Pregelatinized Modified Starch*
Sodium Starch Glycolate*
Tapioca
Wheat









*These items need further investigation if the source of the starch is not specified. The ingredient in question could be derived from either a glutenous or non-glutenous plant source.


Since drug companies don't have to disclose source of the starch, there is no easy way to tell if certain ingredients are gluten-free. Calling the manufacturer is the only [and best] option.

Common gluten-free excipients include*:

Acacia
Alginic acid
Alpha tocopheral
Ascorbic acid
Benzyl alcohol
Calcium carbonate
Carboxymethylcellulose
Citric acid
Corn starch
Croscarmellose sodium
Dextrose
Docusate sodium
Fructose
Glucose
Hydrogenated vegetable oil
Hydroxypropyl cellulose
Lactose
Magnesium carbonate
Magnesium stearate
Matitol
Maltose
Mannitol
Microcrystalline cellulose
Polydextrose
Povidone
Propylene glycol
Silicon dioxide
Simethicone
Sodium benzoate
Sodium lauryl sulfate
Sorbitol
Stearic acid
Sucrose
Vanillin
Xanthan gum
Zinc stearate















*Source: The Gluten Intolerance Group Medications & Celiac Disease

Cynthia Kupper, RD (Executive Director of the Gluten Intolerance Group) states that patches, inhalants, injectables, and liquids/elixirs are not problematic for those following a gluten-free diet. Source: HealthNow's 2010 Gluten Forum DVD


Mylan Labs

NOTE: This conversation was from 2013. I have not contacted them since.

So far, Mylan Labs has the best response about GF status of several pharmaceutical companies.

I was doing a status check on a medication and had an interesting talk with a Mylan [a drug mfg] customer service rep. He was very knowledgeable and understanding. He was a nurse, so he had a clue about celiac disease. He even mentioned gluten sensitivity.

They have a manufacturing facility in Morgantown, WV where 80-90% of their meds are made. The rep I spoke with last was based in WV. The rep I spoke with earlier, was not from location, probably PA. They do outsource some meds to a facility in India.

I was told that no wheat, barley, rye, spelt or oats are used in that facility in Morgantown. I was told by the rep in PA 3 months ago, that the "no gluten" was no longer the case. I will still continue to verify that info every 3 months at refill.

I asked raw ingredients were tested for gluten...he said ingredients were tested for quality and purity, but did not specifically say gluten. He did mention that they did test one of their meds [I can't remember which one], and it tested as gluten-free.

When calling Mylan, try to speak with someone in the Morgantown, WV plant. They will need the name of medication, the dosage, and the markings on the medication. If tablet - they'll ask about both sides



Here are a few other links of interest:



A good resource to start your GF meds search is http://glutenfreedrugs.com/ This site is maintained by Steve Plogsted, PharmD, BCNSP, CNSC and his pharmacy students at Columbus Children’s Hospital, Columbus, OH.

As with all gluten-free lists - they should only be used as a guide - a starting point. Please verify the status of these products before you take them as ingredients can change.



A lot of great information about medications and gluten.

A companion piece is this great webinar with Steve Plogsted recorded on February 11th, 2015:
https://www.youtube.com/watch?v=DwZvYPhfGZg

Download the slides from that webinar - another excellent resource!


Medication and Supplement Use in Celiac Disease - Medscape (requires a free account)

Ashley N. Johnson, PharmD, BCPS, Angela N. Skaff, BS, PharmD Candidate, Lauren Senesac, PharmD Candidate. US Pharmacist. 2014;39(12):44-48

"Abstract: Celiac disease is a chronic condition involving an abnormal immune response to the ingestion of gluten-containing foods and products that commonly results in digestive symptoms, although other organ systems may be involved. The current mainstay of therapy is the avoidance of gluten-containing foods, beverages, and other products. However, if not equipped with the knowledge that medications, OTC products, supplements, and vitamins may contain gluten, patients with celiac disease may experience ongoing symptoms from continued ingestion of these products. Therefore, pharmacists play an essential role in educating patients and evaluating their medication use to ensure the optimal management of celiac disease."



This is a great article, despite it's age [Jan. 2007]. If you are gluten-free and take medications, please take the time to read this article and educate yourself. Pharmacists also need to be educated about gluten-free medication as well. It has been my experience that GF knowledge is hit and miss [at least in my home town]. I printed this article and gave it to my pharmacist.

Note: Due to the article's age, any brand name products that are stated as gluten-free, should no longer be considered GF. It's my opinion that any published list of gluten-free products, should not be blindly followed. Since manufacturers can change the ingredient list without notice, the product needs to be verified with each purchase.



Great article by Lisa Fitterman about gluten in medication.



Great article by Erica Dermer. Can your pharmacist tell you whether there's gluten in your prescriptions?



4 tips to make your medications safer.



A lot of good information in this interview with Steve Plogsted, PharmD, BCNSP, CNSC.



Older article, but still has useful information



Older article, but still has useful information



More info about gluten in medication. Another interview with Steve Plogsted, PharmD, BCNSP, CNSC.



Hints and tips from Nancy Lipid.



DailyMed provides high quality information about marketed drugs. This information includes FDA labels (package inserts) and ingredient lists. This Web site provides health information providers and the public with a standard, comprehensive, up-to-date, look-up and download resource of medication content and labeling as found in medication package inserts. The National Library of Medicine (NLM) provides this as a public service and does not accept advertisements.



Pillbox – Provides a way to search medications by ingredient. The Pillbox website was developed to aid in the identification of unknown pills (oral solid dosage form medications). It combines images of pills with appearance and other information to enable users to visually search for and identify oral solid dosage form medications.

Once a pill has been identified, additional information is provided, including brand/generic name, ingredients, and the National Drug File identification number.



NFCA presents some basic background information on celiac disease and areas where gluten might hide in medications.

Sadly, NFCA no longer offers a free online continuing education program for Pharmacists. However, a handout from the program is still available: Celiac Disease Training for Pharmacists. Still worth sharing with your pharmacist.

They also have a
PDF for Pharmacists.



Background info on Gluten in Medicine Disclosure Act (HR 2003)

HR 2003: Gluten in Medicine Disclosure Act Update - November 2013:
http://celiac.org/blog/2013/11/06/hr-2003-gluten-in-medicine-disclosure-act-update/



Reps Tim Ryan (OH) and Nita Lowey (NY) have introduced the Gluten in Medicine Disclosure Act (HR 2003). This bill requires the sources of gluten to be listed on medication labels.

NFCA interviews Nita Lowey about the Gluten in Medicine Disclosure Act -
Read More...

Please, Click here to tell your Representative that we need better labeling on our medications!

Follow this bill's progress via GOVTrack.us.

The Gluten in Medicine Disclosure Act has been endorsed by: American Celiac Disease Alliance, National Foundation for Celiac Awareness, Celiac Disease Foundation, Celiac Sprue Association, Gluten Intolerance Group, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, and the American College of Gastroenterology.



Suzy Cohen participated in Dr. Tom O'Bryan's Gluten Summit: A Grain of Truth. Her topic was "Hidden Sources of Gluten in Your Vitamins and Medications". She offered a lot of great information about navigating the world of medications. If you missed the free airing of these interviews, you can purchase access to all 29 amazing interviews.

Suzy's
DearPharmacist.com website contains a couple of links worth checking out.





Hopefully you and your Pharmacist find this info helpful.

Al

update 10/19/16 - added AllergicLiving.com's link
update 10/31/15 - Updated GIG's Celiac Disease & Medications link
update 09/12/15 - Added Living Without's - Gluten-Free and More article "Gluten in the Pharmacy"
update 05/13/15 - Added Living Without's - Gluten-Free and More article "Allergens in your Medication"
update 02/23/15 - Added Medscape article "Medications and Supplement Use in Celiac Disease"
update 02/13/15 - Added med research sites and Gluten in Medication Webinar/slides
update 07/29/14 - Added CDF link
update 05/25/14 - Added About.com article.

update 05/25/14 - Added PracticalGastro 2008 & 2009 articles.
update 05/25/14 - Added Delight Gluten-Free Magazine article.
update 03/18/14 - remove link to GREAT Pharmacists training - add link to corresponding PDF
update: 12/14/13 - updated link to GIG's Medications & Celiac Disease educational bulletin
update: 11/9/13 - added Gluten In Medicine Disclosure Act info
update: 9/11/13 - added Living Without's Steven Plogsted interview
update: 05/03/13 - added more info on excipients.

CD more common than 50 years ago

Celiac expert and gastroenterologist, Dr. Joseph Murray, of Mayo Clinic lead a study that is published in the July 2009 issue of Gastroenterology.

This study looked at blood samples that were collected at
Warren Air Force Base between 1948 and 1954. The researchers tested the samples for celiac disease and compared the results from those individuals collected recently. They found young people today are more than 4 times as likely to have celiac disease than the same age group in the 1950's.

Also noted in the study was that patients who did not know they had celiac disease were almost 4 times as likely to have died during the 45 years of follow up.

It's not known exactly why it much more common.

Watch a video of Dr. Murray discuss this study

More details on the study can be found here.


Al's Commentary:

I wonder how much of the increase has to do with the amount of processed foods that exist in the Standard American Diet?