Am I Having a Gluten Reaction?

I am constantly amazed by the customers who come in after a long hiatus and say they are getting “glutened” all the the time, their antibody levels are up and they need to come here more often!  Wow, you really have to be getting exposed to gluten on a regular basis for your antibodies to go way up. There are 3 major reasons why this happens to people so often.

  1. Cross Contamination
  2.  Eating an item that does not have gluten ingredients in it but is NOT labeled GF and not 100% GF
  3. Eating at a new restaurant or any restaurant the has “GF” offerings but is not dedicated GF.

I read recently that if you are getting exposed to gluten more than once a month, you are asking for problems! Why is it a problem? Gluten affects every cell in your body because Celiac Disease is an auto-immune disease! The problem I see is that people are not recognizing the symptoms when they are having a reaction. There are more than 300 Signs and Symptoms…you can have a few or many.  Click Here for 300 Signs & Symptoms

Recently, a Celiac customer, who lives in Arizona was in town. Yes, she is a regular customer, because she is here every day that she is in town; we see her more than some people who live 5 miles away! Anyway, she told me what happened to her out in Arizona and how sick she was getting…eating anyplace that had a “GF” menu.  As we talked it was apparent that she was not recognizing the symptoms she was having for about one year! She thought she had a “handle” on this GF stuff. Yes, sinus and ear infections, headaches, inflammation, knife like pains, gall bladder attacks, etc are symptoms! She ended up in the hospital. She also said she was eating “GF” Cheeri-Oh-Nos in addition to eating anywhere with a GF Menu! (see 3 previous blog posts on “GF” Cheerios; they are not GF folks!) Stay tuned, I plan to let her tell her story in the next week or so!

Gluten reactions vary from person to person and the amount of time between exposure to gluten and the time of symptom manifestation varies from person to person. However, for the most part, the reactions become more severe the longer you have been off gluten.

That being said, a person who is constantly being exposed to gluten tends to stay the same and not improve after diagnosis. They never will improve unless they get the gluten out of their system…(6 to 9 mos with no gluten exposure).  I have been dealing with this for almost 30  years and I know the pattern of symptoms that appear and how they evolve in me when I get exposed to gluten!

For me, I will get severe acid reflux within 1 hour and then I know I am in for 10 days of hell! I have a racing heart beat and pains in my legs by the time I get home and into bed. I fight the urgent need to vomit. Sometime in the evening or the next morning I have sharp knife like pains in my right side, diarhea and vomiting at the same time, migraine headache, bloated abdomen. I start sweating profusely and prefer to lay on the cold tile floor of the bathroom and quite franly, it is just more convenient for me than running to and from my bed! By about day 3 the joint pain, constipation, DH Rash (dermatitis herpetiformis; it looks like excema and is the skin manifestation of Celiac Disease which can be biopsied for diganosis), brain fog and Ataxia start to set in. For me, ataxia is the inability to speak in complete sentences, stumbling and falling when trying to walk, walking into walls. By about day 9 or 10 I have MS type reactions, with involuntary muscle spasms in my legs and arms.  I takes about 9 months (to the day) for my DH rash (on scalp, arms, elbows, knees, ankles, face and sometimes with sores in my mouth, nose and ears) to clear, and that is how I know all gluten is out of my system.  If I were to keep getting exposed to gluten, the rash will never go away.

With an anaphylactic food allergy, you know right away…you take benedryl and/or reach for you Epi Pen! With Celiac reactions, it is not so easy to know what is happening, especially if you are newly diagnosed or if you are a child, you can’t always communicate it to your parent. Below are some examples of what customers are sharing with me when they come in.

In just the past month I have had several examples that I thought might help you:

  1. A family come in with their child who has celiac disease and they came once when first diagnsoned, but for the past two years they have been eating at any place that claims to have a GF Menu! The child’s doctor said that the Celiac antibodies were very high and they have to stop eating out so much, unless it is at a completely GF place! Well, they came back to see me and Mom said “we need to come here more often”.  The child had the tell-tale signs that I always see in kids, dark circles under the eyes, tired, cranky or mood swings and complaining of stomach aches.
  2. An adult, living in an assisted living facility, has not been feeling well. Family brings her in once a month or so.  She said she was losing weight too. I asked her if they checked her antibodies, she said they don’t really follow it for her. I asked her if there was a change in her diet and she said she started eating “GF Cheeri-Oh-Nos” a few months ago and has them every day for breakfast.  I recommended they run new blood work and go get some knock off “cheerios” that are truly GF.  (search this blog to read about the Cheerio-Oh-nos drama)
  3. A child who eats here once a week was having stomach aches and symptoms. He had started eating Cheeri-oh-nos. They pulled them out of the diet and he is feeling much better.
  4. An adult, diagnosed at least 5 years ago, felt she really had good control of her diet and started eating anywhere that offered a GF Menu. (she lives out of state and comes here a couple of times a year).  She was having intestinal pain, constant ear infections, sinus infections, bloating and just feeling very sick.  It finally occurred to her that it was gluten exposure on a consistent basis. After eating “Cheeri-oh-nos” she ended up in the emergency room. She finally purchased a Nima Sensor and is testing everything.  She said, the trick is to take samples from all parts of the meal, mix them up and then put them in the sensor to test.

Here is a great article on Gluten Reactions: Click Here

What should you do if you think you/your child are getting exposed to gluten? First, get  to your gastroenterologist and get checked out.  Stay safe out there gang and take a close look at your habits!  Look at what and where are you eating.

 

 

 

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Letter to American Airlines re: Food Allergy Policy

Here at One Dish Cuisine Cafe, Deli and Bakery, we have the most amazing customers! The following letter is from our young customer, Leah, who is a teenager, asking American Airlines to re-think their food allergy policy.  Leah has a peanut allergy and so does her brother. I think you all will beyond impressed with this letter and the research she did in order to write this wonderful letter!

13 March, 2017

Mr. Robert Isom, American Airlines

Dear Mr. Isom,

American Airlines is an amazing machine of prominent leadership, in charge of thousands of people per day. And leaders all over the world should continuously be in tune to human needs and safety, making sure that those they are in charge of are both safe and happy. This includes the 3 million people in the world who suffer from anaphylactic nut allergies, who put their lives and safety into your hands (Idiom?) whenever they fly American. According to Food Allergy Research and Education (FARE), “every 3 minutes, a food allergy reaction sends someone to the emergency room” (Logos). People with food allergies live in fear of this statistic, everyday tasks made tricky. Flying is a whole other story. But American can be the airline allergic people come to, the airline they trust (Anaphora). It is American’s time to step up as a leader in the food allergy community, American’s time to save lives everyday because of positive safety measures installed for food allergies. It is American’s time, Mr. Isom. (Repetition)

Recently, there have been complaints against your airline for mishandling and lack of knowledge regarding food allergies. In a New York Times article, lawyer Mary Vargas (Ethos) states that “when [nut allergic] families request permission to pre board [and wipe their seat free of nut allergens]…they risk being taken off the flight” a negligent mark on American Airlines’ policies (Rabin 2). Not only is this bad publicity for an airline like American, and heartbreaking for those being kicked off the plane, it may be illegal. According to FARE, “American Airlines’ policy is a violation of the Air Carrier Access Act, which provides that no air carrier may discriminate against any…individual with a disability” [Logos/Ethos] (Russell 3). Since food allergies are a fatal disability under the law, American Airlines not allowing passengers to accommodate for their allergies (no “nut buffer zones”, no pre-boarding, etc) is not legal. Should American really be defined by discriminatory policies and illegal actions? (Rhetorical Question) That goes against all the excellent values of quality, dedication, and service that the airline stands for! And everytime American denies a nut allergic passenger the right to fly, or hassles them about a disability they cannot control, they not only lose a customer. They truly hurt someone, or worse, endanger their life.

Food allergies are not only tricky to manage, they are terrifying (Personification). The constant checking of the labels. The knowledge that a peanut butter sandwich is poison (Metaphor). All people with food allergies want is to feel safe, and be treated like any other person. Take it from Roseanne Bloom, a mother who was kicked off an American plane because her two sons had nut allergies. She writes, “several AA employees approached us…and told us we were not able to fly [on American]…your employees were condescending and rude…my boys felt discriminated against and were treated as if they had done something wrong…what had we done wrong?” [Pathos] (Bloom 2). What did they do wrong? (Rhetorical Question) Why should anybody be stopped because of an immune system response they cannot control? Denying nut allergic passengers the right to fly is not the answer to the problem. It hurts more than it benefits. When a young girl flies American and reports “employees were joking about her severe allergies…[being] very rude” it not only reflects negatively on the airline, it makes a disabled person feel terrible about something that they cannot control [Pathos] (Rabin 3). Food allergic people do not deserve to be treated like scum (Simile), or even worse than non allergic counterparts- it’s the opposite. They deserve to be on an airline that takes the time to care about their needs, and ensure they have a safe flight. Just like they would anyone else. Other airlines have already began to find solutions to make sure allergies are not an issue on their flight. American Airlines undoubtedly has the power and standing to follow suit. Will you take this opportunity to help the 15 million in the world with food allergies? (Logos, Rhetorical Question)

Other airlines, such as Delta and JetBlue, have already found solutions (Bandwagon) to protect those with food allergies and help them get where they need to go. In an NY Times article, Sydney Silverman reports an excellent food allergy experience with Delta Airlines- recalling “a flight attendant asking people…‘Is it o.k if I don’t serve you peanuts on the flight?’, and they all said yes” [Dialogue] (Rabin 3). The attendant also made an announcement over the intercom to say they were not serving peanuts because of an on board allergy. No passengers complained or fought the allergy- and the flight went smoothly. Meanwhile, American’s policy says ‘We are not able to provide nut buffer zones, nor are we able to allow passengers to pre board to wipe down seats’. The policy also proclaims that nuts will still be served in the midst of a food allergy. These policies must be changed as food allergies continue to rise, and more allergic passengers look for an airline to protect them in the sky. One may agree with Dr. Andrew Craig of the American Peanut Council, [Ethos] who says that “the evidence about the perceived risks of eating nuts on planes has been presented [as low]” (Craig 2). But one man’s findings do not erase the story of Alisa Gleason, who “went into anaphylactic shock on board a…flight when a woman sitting several rows in front…opened a bag of peanuts” (Wicker 2). Or the story of a young 4 yr old, when “a passenger [despite warnings] sitting several rows away…opened a bag of nuts. The girl stopped breathing but luckily survived” (Wicker 3). Those stories could have gone many different ways. They could have ended in tragedy and loss. Or they could have not happened at all, because an airline took time to secure passenger safety. There could have been buffer zones, stricter warnings for non allergic passengers on board, a no nut flight, etc. (Enumeration) Allergies are on the rise, and sufferers need someone to take the time to care and protect them. It can be you, Mr. Isom. (Direct Address) A little extra time and preparation can save a life. Your motto says you are “The World’s Greatest Flyers.” And if you care about those with food allergies, saving lives and gaining new customers everyday- you truly will be.

I want to thank you for taking the time to read this letter, and hope it inspired an idea of change in American Airline’s policies of dealing with food allergies. A lot of people do not really understand food allergies, or their fatality. But American can be the ones to help them understand, through excellent policies and safety measures. Because while allergic people still struggle to fly safely, the issue of food allergies on planes remains unresolved. American can be the ones to solve it once and for all, providing a safe place for nut allergic customers. The rewards of saving lives of nut-allergic people outweigh the benefits of discriminating against them. Thank you.

Sincerely,

Leah Packer

Works Cited:

Bloom, Roseanne. “American Airlines Nut Policy.” 25 Dec. 2016. Letter.

Craig, Andrew. “Nuts on Planes.” PeanutUSA.com, 2014, http://www.peanutsusa.com/about-peanuts/health-nutrition/186-nuts-on-planes-myths-media-and-facts.html. Accessed 10 Mar. 2017.

Rabin, Roni Caryn. “Travelers With Nut Allergies Clash With Airlines.” NyTimes.com, 26 Jan. 2017, http://www.nytimes.com/2017/01/26/well/family/travelers-with-nut-allergies-clash-with-airlines.html. Accessed 6 Mar. 2017.

Russell, Ben. “WATCH LIVE:  Streaming Now: NBC 5 News logo_dfw_2x HomeNews LocalNBC 5 InvestigatesNBC 5 RespondsHealth ConnectionTexas NewsVideo Vault U.S. & WorldWeirdTraffic WeatherSportsEntertainment Few Clouds69° Connect  American Airlines Allergy Policy Discriminates: Complaint.” Nbc.com, 11 Jan. 2017, http://www.nbcdfw.com/news/local/Allergy-Advocates-File-Complaint-Against-American-Airlines-410365005.html. Accessed 7 Mar. 2017.

Wicker, Amy. “Flying with Nut Allergies.” AllergySafeTravel.com, Jan. 2015, allergysafetravel.com/2015/01/flying-with-nut-allergies-a-call-to-action-2/. Accessed 9 Mar. 2017.

New Info From the 2017 GF Education Day

On Sunday June 11,  I had the pleasure to attend and speak at the Washington DC Gluten Free Education Day again this year. Each year this great event is made possible by the Celiac Disease Program at Children’s National Medical Center. In addition, our bakers Emily and Jennifer did a cooking demonstration of our quick breads.  I spoke about the pitfalls of FALCPA (Food Allergen Labeling and Consumer Protection Act) and the GF Labeling Act and also gave some hints for easy weeknight meals.

This was a wonderful event for those who were newly diagnosed and those who are long time Celiacs got to learn what was new.  There were many activity sessions for children and so many well qualified speakers for adult sessions,  Unfortunately, I could not attend them all.  However, I was most impressed by the keynote presentation; The State of Celiac Disease- Current Research, Latest Advances and Mass Screening Protocols. Below are my notes from the session.

Dr Ivor Hill, Nationwide Celiac Disease Center Ohio; The Quintessential Autoimmune Disorder

-We know more about Celiac Disease than any other autoimmune disease! In 1888 Samuel Gee stated that diet would be the only cure. In 1950 William-Karel Dicke identified wheat, rye and barley as the problem.

-Factors in Celiac Disease are genetics, environmental factors, diet and other unknown triggers.

-Testing Recommendations are antibody blood testing, intestinal Biopsy and Genetic HLA Screening.

-Other grains that may be problematic for Celiacs are: Teff, Oats, Millet because they are in the same family! (Yup, they are a problem for me)

-Genetics; HLA and non HLA Genes found on chromosome 6, you can have DQ2 or DQ28 or both..they are necessary but not sufficient. There are many different versions of DQ2 and DQ8 genes with 40 different mutations associated. There is an autoimmune overlap.

-Trigger Factors; age, progression, prevalence, infections (rotovirus, adenovirus, stress, pregnancy and the Microbiome (lining of intestines) which is a trigger factor and is very different in those with Celiac.

-Research Treatments; Gluten Detox; grain modification is problematic due to the peptides in wheat. Glutenase; enzyme to relieve symptoms after gluten exposure is questionable because our stomach acid can destroy the enzyme.

-Peptide Transport Blockage; problematic…Lorazotide prevents opening of tight junctions in intestine that would let gluten in, but it only lasts about 90 minutes.

-Antibody Blockage or Nexvac 2 will only target those with gene HLA DQ 2.5.

-Future Research: He feels that the future will identify more genes involved in Celiac Disease. Right now half of all cases are cases of people who are asymptomatic.

Dr Edwin Lui, Colorado Children’s Hospital Celiac Disease Center; Is it Time for Mass Screening?

-Celiac Disease is not rare. Right now in the US the rate is 1.3%, Finland is 2% and Sweden is 3% (1984-1996 of all 12 year olds).

-Incidence of Celiac Disease is rising and more people are developing it.

-Who should we screen? Many have no symptoms. Those that are at risk are:

Those with: Type 1 Diabetes (3-12%), Autoimmune Thyroid Disease (7%), Liver Disease, Rheumatoid Arthritis, IgA Deficiency, Downs Syndrome, Turner Syndrome, Pancreatic Disease, Kidney Disease, Addison’s Disease, Parathyroid Disease, Growth Hormone Deficiency, Family History.

-40% of population is at risk of developing Celiac Disease because they have DQ2 or DQ8 genes.

-Following children in Denver study found that 3% developed Celiac by age 15 while 5% developed the antibodies.

Dr Benny Kerzner, Celiac Disease Program Children’s National Health, Wash, DC; Best Practices for Management of Celiac Disease

-Dr Snyder, Dr Liu, Dr Fasano, etc, got together to set guidance for physicians for the care of those with Celiac Disease. Here are a couple of interesting points that he made. Some of this is new information for many of us!

-Check newly diagnosed Celiac for Autoimmune Thyroid Disease, Liver (AST and ALT) and Hepatitis B. (30-70% of Celiacs are non responsive to the Hep B Vaccine if they got it before they started on GF Diet! So make sure you get this taken care of.)

-Vitamin Deficiencies usually correct on their own once following a strict GF Diet…so they don’t usually screen for them unless there are issues that warrant it.  The same for bone density, etc.

Children's National

 

 

 

 

 

“No sex, age, tissue or organs are spared from effects of Celiac Disease”

This is the #1 thing you should listen to if you or someone you love has Celiac Disease or Gluten Sensitivity. If you have people in your life or even one of your doctors who doubt the serious nature of it, have them listen too! (link at bottom)

2/27/17: Dr Allessio Fasano from the Center for Celiac Research is interviewed by Dr Theresa Nacassio on her radio show.

He talks about Celiac Disease, Gluten Sensitivity, the Microbiome, Leaky Gut, neurological complications in the brain and Autism, ADHD, Dimentia, Depression, Skin (Dermatitis Herpeteformis), Probiotics, Fecal Transplants and more!  He even talks about the Non-hybridized wheat myth, GMO’s, pesticides and more.

“No sex, age, tissue or organs are spared from the effects of Celiac Disease….”

The interview starts at  4min and 55 seconds on the timer in the link. You can fast forward through commercials too.  Dr Nacassio also has lots of other links to Dr Fasano’s interviews and talks on Celiac Disease up on her site.

Click Here

Neurological/Pshyciatric Manifestations of Celiac/Gluten Sensitivity

What do Depression, Mood Disorders, ADHD, Gluten Ataxia, Autism, Neurological Issues, Migraine Headaches, Epilepsy, Seizures, White Matter on Brain and Schizophrenia; have in common? According to NIH (National Institute of Health), all of the above are also symptoms of Celiac Disease and Gluten Sensitivity which can affect adults and children!

I get asked about this so often by customers, at least once or twice a week, that I thought I would write about this in depth. Some are having multiple neurological complications from their Celiac or Gluten Sensitivity or their child is exhibiting ADHD Symptoms and stomach aches but has not been tested for Celiac Disease. (I am Celiac and also have Ataxia (Neurological symptoms; loss of balance & coordination, fumbled speech and I exhibit signs of ADHD-can’t concentrate when exposed to gluten). The shocking thing is that many in the medical community are not investigating the gluten connection by testing for Celiac Disease first! Often a child or adult are just put on ADHD medications or anti depressants and just sent on their way. Often the medicines are just addressing some of the symptoms; not the actual cause! The result is ongoing pain and suffering because the true condition is NEVER addressed. The good news is that NIH (National Institute of Health) has put solid information out there for our physicians and us to see!

First we need to understand the difference between Celiac Disease and Gluten Sensitivity. Then we will learn that psychological and neurological issues can be preset in either condition. NIH has some great information about this and will clear up any question that you or your medical provider have about the validity of these symptoms. Finally, I give you a link to these neurological and psychological symptoms; which are sometimes the only symptoms that an adult or child actually presents with. (Yes, many don’t even have any gastrointestinal symptoms or stomach aches!)

First, read this, all of it. Second, if any of this applies to you or you child, get yourself or your child tested for Celiac Disease (while still eating gluten) by a gastroenterologist who is well versed in Celiac Disease.

Celiac Disease (CD) affects about 1% of the population (about 1 in 130) and gluten sensitivity affects about 6% of the population. Even with all of the knowledge that we have now, it is believed that as many as 85% of cases of CD go undiagnosed. CD is dependent on an autoimmune reaction to gluten (the protein found in wheat, rye and barley) and is usually characterized by intestinal symptoms. Those with gluten sensitivity (GS) don’t have intestinal damage (villous atrophy) or antibodies for CD but can test positive for antibodies to gliadin. Those with CD and GS can present with many neurological and psychiatric symptoms. However, gluten sensitivity remains under-treated and under-recognized as a contributing factor to psychiatric and neurological manifestations.

In CD, the classic symptoms typically include abdominal bloating, steatorrhea (excretion of abnormal quantities of fat due to malabsorption) and weight loss. Some just present with a rash that looks like eczema, but is really the skin manifestation of Celiac Disease known as Dermatitis Herpeterormis (DH). However, there are too many symptoms to list here; so a link will follow. Diagnosis is confirmed by testing for a number of different antibodies including anti-endomysial antibodies (EMA), anti-tissue transglutaminase antibodies (tTG), and anti-gliadin antibodies (AGA).  We understand what causes the intestinal damage and the genetics related to CD.  Those genes are HLA-DQ2 or HLA-DQ8 and their other versions.

There are more than 300 signs and symptoms of CD. Click Here for List. This list is great because it describes symptoms as they affect different body systems and there is also a list of how children may present with Celiac Disease (that list is at the bottom of the link). Not everyone presents with the same symptoms..some just have bloating and constipation and stomach aches. Some just are fatigued, irritable and are moody or present with Autism or ADHD like symptoms. The intestinal biopsy used to be the gold standard.  Now there are 5 criteria for a Celiac diagnosis. Those with GS often have the same symptoms as those with CD.

Five Criteria for Diagnosing Celiac Disease and someone only has to have 4 of the 5!

  1. The presence of signs and symptoms compatible with celiac disease.
  2. Positive serology screening (high serum levels of anti-TTG and/or EMA).
  3. Presence of the predisposing genes HLA-DQ2 and/or –DQ8.
  4. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease.
  5. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.

Click Here for More     Click Here for 4 of 5 Rule

People with GS would not fit into less than 4 of the 5 categories. GS is a diagnosis of exclusion; this diagnosis is given once CD and wheat, rye or barley allergies are ruled out. This means all of the above testing was done while the patient is still consuming gluten and did not meet 4 of the 5 criteria for CD. Then the patient is put on a Gluten-Free diet.  If symptoms resolve; you are given a diagnosis of gluten sensitivity!  (There is some evidence that GS is just an early form of CD.)

Neurological/Psychiatric complications of CD have been known to the medical community for over 40 years. Meanwhile, GS sensitive patients also have many neurological and psychiatric complications. However, based on the lack of intestinal involvement, the neurological and psychiatric complications may be the prime presentation in patients suffering from GS! Therefore gluten sensitivity may easily go unrecognized and untreated.

Studies have shown that about 22% of  patients with CD develop neurological or psychiatric dysfunction and as many as 57% of people with neurological dysfunction of unknown origin test positive for anti-gliadin antibodies. Neurological and psychiatric complications observed with gluten-mediated immune responses include a variety of disorders.

From 1953 to 2011 a PubMed literature search located 162 original articles associating psychiatric and neurologic complications to celiac disease or gluten sensitivity!  36 articles for seizure disorders, 20 for ataxia and cerebellar degeneration, 26 for neuropathy, 20 for schizophrenia, 14 for depression, 12 for migraine. There were up to 10 articles each for anxiety disorders, attention deficit and hyperactivity disorder (ADHD), autism, multiple sclerosis, myasthenia gravis, myopathy, and white matter lesions.

However, the  vast majority of research to date has not looked at CD and GS independently, so the true prevalence of the neurological/psychiatric complications with each is hard to pin down. It does call attention to the fact that GS and CD are different gluten-mediated immune responses that may be the cause of patients presenting with a host of psychiatric and neurological complications.

For more information on the symptoms listed at the top of the article (NIH) please use this link. It goes into detail about each neurological and psychological manifestation, just click on link and scroll down, good stuff in here..! Click Here for NIH Info

 

 

Celiac Awareness Month: 300 Symptoms

The average time it takes to be diagnosed with Celiac Disease is 6-10 years!  Why is this so?  I believe it is because people (and many doctors) don’t know the 300 signs and symptoms. Another reason is that people are going on a GF Diet before getting a diagnosis and many just refuse to be tested. If you  have a family member or mother, father, brother, sister, grandparent, cousin, etc with Celiac Disease, you should be tested. Not everyone has the same symptoms.

Below are the 300 signs and symptoms of Celiac Disease. A celiac must be strict with their diet.  Just a crumb or a trace sets the immune system into havoc, which can lead to serious long term complications. Those who go on a GF Diet without Celiac Testing often assume that they are just gluten intolerant. They are at risk because they are not strict like a diagnosed Celiac would be. Therefore; they continually expose themselves to gluten via cross contamination and cheating. This leaves their immune system in attack mode and opens the person up to serious autoimmune complications!

Celiac Disease is an autoimmune disorder

The 300 Signs and Symptoms are courtesy of : “Recognizing Celiac Disease” by Cleo J. Libonati. (Gluten Free Works) way back in January of 2007. We have a copy of this book here in our library at our cafe, deli and bakery. (Link at bottom of list)

Blood System Symptoms

Abnormal levels of blood components and quality of blood cells and plasma, detected by blood studies ordered by a doctor.

  • Anemia, Folic acid
  • Anemia, Iron
  • Anemia, Vitamin B12
  • Anti-Endomysium Antibodies (EMA)
  • Anti-Gliadin Antibodies (AGA)
  • Anti-Tissue Transglutaminase Antibodies (tTG)
  • Associated Autoimmune Antibodies
  • Bone Alkaline Phosphatase Enzyme, Elevated
  • Calcium, Low
  • Cholesterol, Low (below 156)
  • Coagulation Factors, Low
  • Copper, Low
  • Hemochromatosis
  • Glucose, Low or elevated
  • Homocysteine, Elevated
  • Hyperprolactinemia (elevated prolactin hormone)
  • Hypoprothrombinemia
  • Idiopathic Thrombocytopenic Purpura
  • Liver Enzymes, Elevated
  • Macroamylasemia
  • Macrocytosis
  • Macrolipasemia
  • Magnesium, Low
  • Neutropenia
  • Phosphorus, Low
  • Plasma Proteins, Low
  • Potassium, Low
  • Prolonged Prothrombin Time
  • Transient Erythroblastopenia
  • Zinc, Low

Body Composition Symptoms

Disorders of the body as a whole.

  • Anorexia (Poor appetite)
  • Appetite, Increased
  • Cachexia (Wasting of the body)
  • Loss of Vitality
  • Obesity
  • Weight Gain, Unexplained
  • Weight Loss, Unexplained

Cardiovascular System Symptoms

Disorders of the heart and blood vessels.

  • Angina Pectoris
  • Aortic Vasculitis
  • Atherosclerosis
  • Cardiomegaly
  • Coronary Artery Disease
  • Easy Bruising (Ecchymosis)
  • Hypertension
  • Idiopathic Dilated Cardiomyopathy
  • Nosebleeds, Unexplained

Digestive System Symptoms

The following symptoms in this section may be present alone or in any combination in celiac disease.  They result from inflammation, damage,and interference with normal function caused by gluten exposure in the digestive tract itself and/or nutritional deficiencies.  As you see, problems can develop not only in the small intestine where inflammation can be intense, but also in other areas such as mucosal tissues of the mouth, esophagus, stomach and colon.

  • Abdominal Distention (Bloating)
  • Abdominal Pain
  • Adenocarcinoma of the Small Intestine
  • Aphthous Ulcers (Canker sores in mouth)
  • Autoimmune Cholangitis
  • Beta Casein Enteropathy (Cow’s dairy intolerance similar to celiac disease)
  • Bleeding, Unexplained
  • Cancer of the Esophagus
  • Cancer of the Pharynx
  • Candida Infections
  • Carbohydrate Malabsorption
  • Cheilosis (Red lips, cracking/ oozing at corners of mouth)
  • Colitis, Collagenous
  • Colitis, Lymphocytic
  • Colitis, Ulcerative
  • Colonic Volvulus (Loop of intestine twists causing strangulation of intestine)
  • Constipation
  • Constipation Alternating with Diarrhea
  • Crohn’s Disease
  • Defective Tooth Enamel (Yellow, white spots, missing enamel)
  • Delayed Gastric Emptying (Early fullness after eating)
  • Diarrhea, acute (Also called celiac crisis)
  • Diarrhea, chronic
  • Duodenal Erosions in the Second Part of Duodenum (Small ulcers)
  • Dysphagia (Difficulty swallowing)
  • Edema of Small Intestinal Lining
  • Esophageal Small Cell Cancer
  • Esophageal Motor Abnormalities (Poor muscle activity/coordination)
  • Gas
  • Gastric Ulcer (Stomach ulcers)
  • Gastric Ulcerations
  • Gastritis, Collagenous
  • Gastritis, Lymphocytic
  • Gastro-Esophageal Reflux Disease (GERD)
  • Gastro-Intestinal Occult Bleeding (Blood in stool that is not visible to naked eye)
  • Gluten Sensitive Enteritis
  • Gums bleeding/ swollen (Purplish in adults/ red in children)
  • Heartburn
  • H. Pylori Bacter (Infection of the stomach)
  • Impaired Gall Bladder Motility
  • Irritable Bowel Syndrome
  • Jejunitis, chronic
  • Lactose Intolerance (Gas, bloating, loose stools from milk)
  • Laryngospasm
  • Leaky Gut Syndrome
  • Lymphoma
  • Malabsorption of Nutrients
  • Maltose Intolerance (Gas, bloating, loose stools from maltose, a simple carbohydrate)
  • Nausea
  • Oral Mucosal Lesions (Mouth lesions)
  • Plummer-Vinson Syndrome
  • Post-cricoid Cancer
  • Primary Biliary Cirrhosis (Bile backs up in liver)
  • Primary Sclerosing Cholangitis (Scarring of bile ducts in liver)
  • Small Bowel Intussusception (One loop of intestine slips into another)
  • Small Intestinal Bacterial Overgrowth
  • Steatorrhea (Pale, smelly, floating stool hard to flush or sticks to toilet)
  • Sucrose Intolerance (Gas, bloating, mucous in stool from sugar)
  • Tongue (Beefy, red, smooth, burning)
  • Tongue (Fiery red, smooth, swollen, sore)
  • Tongue (Magenta, swollen)
  • Tongue (Pale, smooth, burning)
  • Vomiting

Glandular System Symptoms

Disorders of the glands.

  • Addison’s Disease (Adrenal gland failure)
  • Autoimmune Hepatitis
  • Autoimmune Thyroiditis (Hypothyroidism)
  • Diabetes Mellitus Type I
  • Diabetic Instability
  • Gastro-Intestinal Complications of Type 1 Diabetes
  • Grave’s Disease (Hyperthyroidism)
  • Hepatic Granulomatous Disease
  • Idiopathic Hypoparathyroidism
  • Non-Alcoholic Fatty Liver Disease
  • Pancreatic Insufficiency
  • Parathyroid Carcinoma
  • Primary Hyperparathyroidism
  • Secondary Hypoparathyroidism

Immune System Symptoms

Disorders of antibody production.

  • Allergic Rhinitis
  • Antiphospholipid Syndrome
  • Asthma
  • Autoimmune Disorders in Celiac Disease
  • Autoimmune Disorders in Dermatitis Herpetiformis
  • Autoimmune Polyglandular Syndromes
  • Common Variable Immunodeficiency
  • Food Allergies, IgE and non-IgE Immune Responses
  • IgA Deficiency
  • Sarcoidosis
  • Sjögrens Syndrome
  • Systemic Lupus Erythematosus
  • Urticaria, chronic (Hives)

Integumentary System Symptoms

Disorders of skin, hair, and nails.

  • Alopecia Areata (Patches of hair loss)
  • Alopecia, Diffuse (Balding)
  • Cutaneous Vasculitis
  • Cutis Laxa
  • Dermatitis Herpetiformis
  • Dermatomyositis
  • Eczema
  • Edema (Swelling)
  • Eythema Elevatum Diutinum
  • Erythema Nodosum
  • Follicular Hyperkeratosis (Dry rough skin/ plugged hair follicles on body)
  • Ichthyosis, Acquired
  • Itchy Skin Rash
  • Hangnail
  • Koilonychia (Thin nails that flatten, ends progressively turning up instead of down)
  • Melanoma
  • Nails, Dry and brittle that chip, peel, crack or break easily
  • Nails with Horizontal and Vertical Ridges/Fragile
  • Nail with Rounded and Curved Down Ends, Dark, Dry
  • Nails with White Spots
  • Nails with Splinter Hemorrhages
  • Pityriasis Rubra Pilaris
  • Prurigo Nodularis (Hyde’s Prurigo)
  • Psoriasis
  • Scleroderma
  • Seborrhea
  • Thin hair
  • Vitiligo

Lymphatic System Symptoms

Disorders of the lymphocytes (white blood cells), lymph nodes and spleen.

  • B-cell non-Hodgkin’s Lymphoma
  • Cryptic Intestinal T-cell Lymphoma (Refractory Sprue)
  • Enteropathy Associated T-cell Lymphoma (EATL)
  • Extraintestinal Lymphomas
  • Intraepithelial Lymphocytosis in Small Bowel Samples
  • Lymphadenopathy
  • Mesenteric Lymph Node Cavitation
  • Hyposplenism (Atrophy of spleen)

Muscular System Symptoms

Disorders of muscle structure and function.

  • Hypokalemic Rhabdomyolysis (Acute, severe potassium deficiency)
  • Muscle Pain and Tenderness
  • Muscle Spasm and Cramps
  • Muscle Wasting
  • Muscle Weakness
  • Osteomalacic Myopathy
  • Polymyositis
  • Tetany

Nervous System Symptoms

Disorders of nerves, brain and spinal cord structure and function.

  • Anxiety
  • Apathy
  • Ataxia, Gait Disturbance
  • Ataxia, Gluten
  • Ataxia, Progressive Myoclonic
  • Brain Atrophy
  • Cerebral Perfusion Abnormalities (Poor blood flow)
  • Chonic Fatigue Syndrome
  • Chorea
  • Cortical Calcifying Angiomatosis
  • Dementia
  • Depression
  • Epilepsy
  • Fatigue/ Lassitude
  • Headache
  • Inability to Concentrate
  • Insomnia
  • Irritability
  • Migraine
  • Multiple Sclerosis
  • Nervous System Disorders
  • Peripheral Neuropathy
  • Progressive Multifocal Leukoencephalopathy
  • Schizophrenic Spectrum Disorders
  • Tremors
  • Vasculitis of the Central Nervous System

Pulmonary System Symptoms

Disorders of lung tissue and broncheal tree structure and function.

  • Bronchiectasis
  • Bronchial Pneumonia
  • Idiopathic Pulmonary Hemosiderosis
  • Increased Pulmonary Permeability
  • Increased Susceptibility to Tuberculosis
  • Lung Cavities or Abcess
  • Non-Response to Tuberculosis Treatment
  • Pneumococcal Septicemia

Sensory System Symptoms

Disorders of sense organ structure and function.

  • Bitot’s Spots (Foamy patches on whites of eye)
  • Blepharitis
  • Bloodshot Eyes
  • Blurred Vision
  • Cataracts
  • Keratoconjunctivitis Sicca
  • Keratomalacia
  • Nightblindness
  • Ocular Myopathy
  • Smell, Loss of
  • Taste, Loss of
  • Uveitis, Bilateral
  • Xerophthalmia

Skeletal System Symptoms

Disorders of bone, joints and teeth.

  • Bone Fracture
  • Bone Pain
  • Enteropathic Arthritis
  • Osteitis Fibrosa
  • Osteomalacia
  • Osteonecrosis
  • Osteoporosis
  • Psoriatic Arthritis
  • Recurrent Monoarthritis

Urinary System Symptoms

Disorders of kidneys and urinaty tract structure and function.

  • Hypocalciuria
  • IgA Nephropathy
  • Kidney Stones
  • Urinary Tract Infection

Reproductive System Symptoms in Females

Disorders of organ structure and function.

  • Amenorrhea (Absence of menstrual period)
  • Early Menopause
  • Infertility
  • Late Menarche (Late start of menstrual periods)
  • Premenstrual Syndrome
  • Dysmenorrhea (Painful menstrual periods)
  • Dyspareunia (Painful intercourse)
  • Vaginitis

Reproductive System Symptoms in Males

Disorders of organ structure and function.

  • Hypogonadism
  • Impotence
  • Infertility
  • Sperm Abnormalities

Reproduction: Pregnancy, Labor & Delivery and Puerperium Symptoms

Disorders of childbearing.

  • Severe Iron Deficiency Anemia in Pregnancy
  • Short Duration of Breast Feeding
  • Miscarriage
  • Complications During Pregnancy, Labor and Delivery
  • Complications After Childbirth

Zygote Development Symptoms

Disorders of chromosomes.

  • Down Syndrome
  • Turner’s Syndrome

Fetus Development Symptoms

Disorders of that occur before birth of the child.

  • Congenital Anomalies
  • Intrauterine Growth Retardation
  • Cystic Fibrosis
  • Spina Bifida

Child Development Symptoms

Disorders of children that occur after birth.

  • Autism and Learning Disorders
  • Attention Deficit  Hyperactive Disorder (ADHD)
  • Cancer Predisposition in Children
  • Chronic Bullous Dermatosis
  • Delayed Puberty in Boys
  • Delayed Puberty in Girls
  • Dermatitis Herpetiformis
  • Developmental Delay
  • Failure to Thrive and Growth Retardation
  • Fecal Occult Blood (Blood found in stool that is not visible to the naked eye)
  • Glycogenic Acanthosis
  • Hypotonia
  • Juvenile Autoimmune Thyroid Disease
  • Juvenile Diabetes Type 1
  • Juvenile Idiopathic Arthritis
  • Abnormal Blood Studies
  • Latent Anemia in Enzymopathies of Small Intestine (Lack of enzymes produced by villi)
  • Penicilllin V Impaired Absorption
  • Refractory Anemia (Unresponsive to iron therapy)
  • Osteopenia
  • Rickets
  • Short Staure
  • Stroke in Childhood

Here are some other ways to look at various symptoms :

Behavioral Symptoms

  • Aloofness
  • Hyperactivity
  • Irritability (Common in children with celiac disease)
  • Impatience
  • Lack of Desire to Get Things Done
  • Lack of Feeling
  • Restlessness
  • Timid Behavior
  • Violent Behavior

Neurological Issues

  • Anxiety
  • Apathy
  • Bipolar disorder
  • Depression
  • Difficulty Making Friendships
  • Easy Frustration and Anger
  • Nervousness
  • Panic Attacks
  • Sense of Worthlessness
  • Overly Self-critical
  • Hysteria
  • Hypochondria

Cognitive (Thinking) Symptoms

  • Confused/ Faulty Thinking
  • Confabulation
  • Delusions
  • Dementia
  • Disorientation
  • Faulty Learning
  • Hallucination
  • Inattentiveness
  • Loss of Memory
  • Loss of Immediate Memory
  • Poor Memory
  • Reduced Learning
  • Slow Thinking
  • Scattered Thinking

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Celiac get tested before

My Thoughts on “Grain Brain”; by David Perlmutter, MD

Many customers, while dining in my cafe, have asked me what I thought of Grain Brain, written by renowned neurologist, David Perlmutter, MD.

First, I will say that the book is excellent and a must read for everyone, especially if you or your family are touched by Celiac, gluten sensitivity, autism, dementia, alzheimer’s, stroke or heart disease! Dr Perlmutter goes into great detail about the care and feeding of your brain.  Showing, through research, studies and clinical experience exactly how healthy carbohydrates; such as whole grains and sugar can cause dementia, ADHD, epilepsy, anxiety, headaches, depression and more.

I made some some notes while reading the book that you might find of interest. First and foremost, Dr Perlmutter believes that Gluten Sensitivity is the real issue at hand and that Celiac Disease is an extreme manifestation of Gluten Sensitivity.

Gluten Sensitivity:

-Celiac Disease is an extreme manifestation of gluten sensitivity; the most severe reaction to gluten.

-1 in 30 people have Celiac Disease as estimated by Dr Perlmutter, although experts say 1 in 200 or 1 in 131; many are not diagnosed.

-1 in 4 people are vulnerable to Celiac Disease due to genetics alone and those of northern European descent are more susceptible.

-A person’s genes determine gluten sensitivity or severity, meaning there is a very wide spectrum to it.

-Gluten does not just harm the gut, once the genes are triggered, sensitivity to gluten is lifelong condition that can affect the skin, mucous membranes and the mouth.  Gluten reactions can involve any organ in the body including the brain, even if the gut is fine.

-The brain is at great risk if a person is gluten sensitive.

-Food Sensitivities are usually a response from the immune system.  The presence of gluten basically disables the body’s immune system and it can’t fully support the body’s natural defenses.

-About 45% of people with ASD (autism spectrum disorders) have gastrointestinal problems. There is an increased prevalence of celiac in pediatric cases of autism, compared to the general population.

-People with Celiac Disease may be at increased risk for developmental delays, tic disorders, learning disorders and ADHD.

-Depression and anxiety are often severe in those with gluten sensitivity.

-He dispels the myth that all fat is bad for you. Low cholesterol can affect mood and put your brain at risk. Your brain needs fat and is made of fat.

-“Routine lab tests for Celiac Disease are not sensitive enough to uncover gluten sensitivity, so don’t bother with them”. (I take issue with this, you need to know if you have Celiac first, then if negative, look for gluten sensitivity. No wonder 83% of those with Celiac are said to be undiagnosed!)

-Inflammation is the cornerstone to brain disease. He goes into great detail about dementia and alzheimer’s disease and the role gluten plays along with sugar, statin drugs, strokes, diabetes and so much more. Much time is devoted to talking about how all carbohydrates; grains and sugar are causing us problems (inflammation) and has lots of studies and clinical experience referenced in the book. There is also great information in the book about vitamin deficiencies, leaky gut and more.

I think this book is a must read; or buy it on CD and listen to it on a long car ride. I think it is eye opening and saw so many of my health issues highlighted in this book;Grain Brain it has convinced me to tweak my GF diet a bit. (I can attest that gluten does affect the brain! Read my blog post about when I was “glutened” on vacation.)