Feb 28th Is Rare Disease Day; Some Intertwine with Celiac Disease, Food Allergies and Autism

February 28th is Rare Disease Day: I wanted to spend some time on this because many of our customers have rare diseases and/or Celiac Disease, Food Allergies or Autism.  Think about it, 20 years ago, most never heard of any of these and now you hear about them. In this post I will highlight some of the Rare Diseases that can intertwine with Autism, Celiac Disease and Food Allergies.

I definitely see and hear it all via our wonderful customers; especially when it comes to rare diseases. You can’t imagine what these brave men, women and children go through… along with their families! Below are some of those rare diseases and a brief overview of each; please review and be aware. Awareness leads to diagnosis and funding for research.
-So, in honor of our customers and their families who have had to fight, scream and claw to get a doctor to take them seriously; in order to get a diagnosis other than “hypochondriac”; this is for all of you.  Each one of you are a “hero” in my eyes and I am so grateful to you for sharing your experiences with me while you are dining here. 
-Dysautonomia- is actually not rare, over 70 million people worldwide live with various forms of it. This can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac, Sjogren’s syndrome, lupus, and Parkinson’s.  Currently there is no cure for dysautonomia.  However, secondary forms can improve with treatment of the underlying disease.

‘Dysautonomia’ is really just an ‘umbrella term’ that describes several different medical conditions that cause a malfunction of the Autonomic Nervous System. ‘The Autonomic Nervous System controls the “automatic” functions of the body’ those are the functions that we don’t have to think about in order for our body to perform the functions. Examples would be: “heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.” Basically, those who have certain forms of dysautonomia will have difficulty regulating these systems “which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death”.

-People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.
Some of the different forms of dysautonomia include:

1) POTS (Postural Orthostatic Tachycardia Syndrome)-

“estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,000,000 to 3,000,000 Americans. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.”

2) Neurocardiogenic Syncope (NCS)- is the most common form of dysautonomia. “NCS impacts tens of millions of individuals worldwide. Many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. However, some individuals have severe NCS which results in fainting several times per day, which can lead to falls, broken bones and sometimes traumatic brain injury. Individuals with moderate to severe NCS have difficulty engaging in work, school and social activities due to the frequent fainting attacks.”

3) Multiple System Atrophy (MSA)- is a fatal form of dysautonomia that occurs in adult ages 40 and up. A neurodegenertive disorder, it  has some similarities to Parkinson’s disease. However, unlike Parkinson’s patients, those afflicted with MSA  usually are “fully bedridden within a 2 years of diagnosis and die within 5-10 years”. MSA is a rare disease, with estimate of only 350,000 patients in the world.  “There are some treatments available to improve quality of life, both with medications and lifestyle changes/adaptations, but even using all treatments available, many dysautonomia patients experience disabling symptoms that significantly reduce their quality of life”.

Dysautonomia International encourages you to learn more:
-Ehlers Danlos Syndrome (EDS)- is an inherited connective tissue disorder and can present in different ways which have been classified into several types. “It primarily affects your skin joints, muscles and blood vessel walls. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. In some cases, the severity of the mutation can be life-threatening.””There is no cure for EDS, and treatment includes close monitoring of the digestive, excretory and particularly the cardiovascular systems. Occupational and physical therapy, bracing, and corrective surgery may help with the frequent injuries and pain that tend to develop in certain types of EDS, although extra caution and special practices are advised to prevent permanent damage.”

Often misdiagnosed as a “hypochondriac”, the person suffering with EDS may also suffer from “depression, chronic fatigue syndrome and other conditions because EDS is considered an invisible disability and there is generally poor knowledge about EDS among practitioners.”  Many sufferers have psychological difficulties which are a direct result of frustration with the medical profession and the difficulty of having to appear “normal” while being in very real and very severe pain.  There are support groups who try to raise awareness about EDS among the general public and medical professionals.

http://www.ehlersdanlossyndrome.org/

 -Gastroparesis- means stomach paralysis and “is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally.”  Normal muscle contractions move food through your digestive system. However, in gastroparesis, “your stomach’s motility works poorly or not at all”.  This means your stomach will not empty properly. “Gastroparesis can interfere with normal digestion, cause nausea and vomiting, and cause problems with blood sugar levels and nutrition.”

The cause of is usually unknown. “When this is the case, it’s called idiopathic gastroparesis (IG). When people who have diabetes develop gastroparesis, it’s called diabetic gastroparesis (DG). Some people develop gastroparesis after surgery. There is no cure for gastroparesis, but changes to your diet, along with medication, can offer some relief. ” For more info use link below.

http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971

-Mast Cell Activation Disorder-
Mastocytosis is one of the mast cell diseases. It is a rare disorder that affects children and adults.  It is caused by “the presence of too many mast cells or mastocytes and mast cell precursors. Those afflicted often experience itching, hives and anaphylactic shock “caused by the release of histamine from mast cells”. However, it appears that the “current classifications and diagnostic criteria are being reviewed to better describe the collection of related disorders”.  Mast cell disorders are found on the skin, internal organs, bowel, throat.

“Because mast cells play a role in allergic reactions, the symptoms of mastocytosis often are similar to the symptoms of an allergic reaction.” Some symptoms are:
 
  • Fatigue, Skin lesions and itching, Abdominal Discomfort,Nausea and Vomitting, Diarrhea, Food and Drug Intolerance,  Intolerance to Smells, Infections like bronchitis, rhinitis, conjunctivitis, Inflammation of Ear/nose/throat, Anaphylaxis (shock from allergic or immune causes), low blood pressure (shock & fainting), bone/muscle pain, decreased bone density or increased bone density (like osteoporosis or osteosclerosis), headache, vision discomfort and malabsorption.

http://my.clevelandclinic.org/health/diseases_conditions/hic_Mastocytosis

-PANDAS- (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)
“This term is used to describe a subset of children who have OCD or Tic Disorders (Tourettes Syndrome) and their symptoms worsen after a strep throat infection or scarlet fever.  Characterized by a dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a strep throat infection.”  Some of the children with this also have ASD (autism spectrum disorder).

Advertisements

Meat Allergy Brought On By Tick Bite!

This is from our newsletter in July 2012.  Author, John Grisham, shared his story with Allergic Living about his long journey to identify his beef allergy which was brought on by a tick bite!  (known as Alpha-gal Red Meat Allergy caused by tick bites)

John Grisham was experiencing reactions, some at night, feeling like his skin was on fire and welts that would swell and itch.  Trying to find out what was causing it was a long ordeal. He consulted a doctor and kept a journal of everything he ate for months and discovered the cause of his reaction. It was meat (beef, pork and other mammals meat). He later learned that the cause of his allergy was linked to a Tick Bite and his farm in Virginia is located in an area known to have lots of ticks.

What makes this hard to diagnose is that the symptoms often start over four hours after the meat has been ingested. University of Virginia researchers were the first to document this type of allergy. UVA’s world renowned Allergist, Dr Thomas Platts-Mills also developed a meat allergy after being bitten by a tick.

Click on the links below to read John Grisham’s incredible story about his journey to diagnosis and learn why he now eats a lot of chicken.

http://allergicliving.com/2012/04/10/profile-author-john-grishams-allergy-mystery/

http://allergicliving.com/2014/08/21/interview-on-alpha-gal-red-meat-allergy-caused-by-tick-bites/

What Really Happens to a Celiac When They Consume Gluten?

From January 2015 Newsletter: There is a lot of misunderstanding out there about what really happens to a Celiac when they consume gluten.  My experience and the experience of most of my customers is the unintentional invalidation from others about how severe the reaction can be. Invalidation is the last thing we want to hear!  After a year or so, a person with Celiac Disease or Gluten Sensitivity comes to recognize the symptoms and they usually vary in severity from person to person, but each person tends to experience the same symptoms each time, so we know when we get “glutened”.  It is not the same thing as anything else, it is a simple cause and effect and when it happens enough times, we know exactly what it is! Just like when you have had a few colds in your life, you know exactly when you have the next one, you don’t need someone to ask you if you are sure that you really have a cold!

The reactions that I experience tend to be the same, but the severity varies based on how much gluten I accidentally ingested.  First, I will use my situation as an example (most of our customers say they experience many of the same symptoms). Then, I will give you the science behind the reactions, explaining why this happens.

Within 4 hours of accidentally ingesting gluten, acid reflux starts; it is like a burning from my intestines all the way up to the back of my throat and no amount of Tums or prescription anti-acid drug could put out this fire! (Back before I knew I had Celiac, I would do what many do; eat plain saltine crackers to help settle my stomach; this was just making things worse).  Pretty quickly a headache starts to set in, which will become severe the longer it goes on and I need to stay in a dark room because light makes it worse. Nausea sets in, sometimes I vomit, sometimes I don’t. Actually, I try not to vomit because the vomiting is so violent for me; I often lose control of my bowels at the same time and that is the worst part.

Within 5 or 6 hours, my heart will start to race, it is like I can feel the blood pulsing through my veins, especially in my thighs. Then, I get knife like pains in my stomach, it is usually worse on the right side and then the loose bowels start and my abdomen distends. When I have to “go”; it is hard for me to hold it in. So, when I have to go, I better be in a bathroom within 30 seconds.

The next day, the severe fatigue sets in; holding my head up is an effort and sometimes my joints hurt. All of the above symptoms are still going on as well.  I take Tylenol for the migraine headache, but all I can do is drink water for the rest of the symptoms and try to flush out my body.

By day 3 severe constipation sets in, making me not want to eat, because I know it won’t come out of me. Then “brain fog” will set in, where it is difficult to speak (hard to find my words) and sometimes I get lightheaded and experience virtigo and often walk into doors and trip over my own feet (this can last a week). I can’t go to work or get off the couch. My stomach is still distended.

By day 4, an itchy rash starts on my scalp, then my buttocks, sometimes it will get my arms, face and abdomen as well. I have had it on my ankles a few times. With a severe “glutening”, by day 4 or 5 I will have mouth sores.

After 2 weeks, I will feel like I am getting back to normal. By week 4, the mouth sores have cleared up, but the skin and scalp rash takes about 6 months to completely go away.  The itchy rash oozes if I scratch it and then scabs over. Washing and brushing my hair is painful and I have to be extremely careful so it won’t start bleeding. After 6 months, I am rash free as long as I don’t get “glutened” again!

Gliadin is a protein found in Wheat, Rye and Barley. It contains amino acids which trigger the autoimmune reaction that causes Celiac Disease and the symptoms associated with CD. When a Celiac consumes gluten it causes a complex set of events that result in the production of auto-antibodies that can damage the intestines and cause DH (dermatitis herpetiformis).  There are two autoimmune antibodies found; IgA and IgG which are Immunoglobin A and Immunoglobin G.

In a healthy immune system the IGA and IgG would identify germs or other foreign “bodies” and neutralize them. However, in an autoimmune disease, like Celiac Disease, they will “turn” on the tissue that they would normally protect. IgA is involved in the immune processes of the skin, mucosal tissues of the small intestines and other mucous membranes. This can result in damage to the lining of the intestines causing vitamin deficiencies and other serious complications and it can also manifest solely via DH on the skin. (25% of those with Celiac Disease also have DH)

Dermatitis Herpetiformis (Itchy Skin Rash Seen in Celiac Disease)

Itchy, Oozing, Painful Rash?  I had a real bad case of this, stumping all doctors and a top NIH dermatologist for so many years; it comes back if I get ‘glutened’ and I get it primarily on my scalp and the back of my arms but sometimes it will show up on my abdomen, buttocks, ankles and my face.

It could be an autoimmune condition known as Dermatitis Herpetiformis.  The complete article is below and written by Caroline Doenhoefer, Editorial Assistant at Delight Gluten Free Magazine. I chose to copy the entire article because I don’t think that paraphrasing this could do it justice. If you have GI Symptoms and a rash, make sure you point this out to your gastroenterologist! From what I see and hear from our customers in our cafe, this is the number one symptom of Celiac Disease that is missed by GI docs and dermatologists.

Anyone familiar with celiac disease knows the typical symptoms: gas, bloating, fatigue, and various other signs of gastrointestinal distress. But what if your body materialized the illness in a completely unexpected way and to an area completely unrelated to the digestive tract?  About 20 to 25% of people with celiac disease don’t actually show any gastrointestinal upset in response to the gluten protein. Instead, they break out in an intensely itchy and painful rash-an affliction related to celiac disease and known as dermatitis herpetiformis.

Shortly after the birth of her son, Beth Triner noticed an irritating skin rash on her knees. For months, she brushed off the existence of the itchy, hive-like pustules as stemming from the stress of being a new parent. Eventually, Beth noticed that her rash came and went but always reappeared at some point, primarily on her knees and elbows. She figured it was connected to seasonal allergies and didn’t feel it necessary to seek out a physician.

Years later, however, after Beth returned from vacation in Cancun, Mexico, her skin rash spiraled out of control. After almost two decades of painful and itchy patches on her body, Beth and her doctors finally diagnosed her mystery outbreaks: dermatitis herpetiformis (DH), due to celiac disease.  DH is the outward and visible result of the body’s abnormal immunological reaction to gluten. The chronic itchy lesions are deposits in the skin which are the body’s response to IgA, the antibody used to fight the toxins in gluten. The only way to the fix the damage to the skin is to maintain a gluten-free diet. “It was so intensely itchy that I’d wake up scratching,” Triner explains. “In my case, the rash eventually moved from the knees and elbows to the buttocks. That was what bothered me the most. At one point, it hurt to sit.” 

Triner tried everything in her medicine cabinet, from hydrocortisone cream to Benadryl, yet nothing seemed to work on her skin eruptions, which doctors originally thought were caused by eczema or perhaps chigger bites.

“DH is hard to pinpoint because you want to scratch it so much, it often looks different when you finally get into the doctor’s office,” Triner notes. Unfortunately, general practitioners are less likely to be familiar with the nuisances of DH and its connection to celiac. Triner, like many, actually helped to diagnose herself by bringing in an article from the Journal of The American Dietetic Association that featured a picture of a DH rash, which looked extremely similar to her own.

Triner had always suffered from a mild case of IBS. She had never thought twice about her GI-symptoms until her DH diagnosis. “DH was my ‘aha!’ moment,” notes Triner, who immediately embraced a gluten-free diet after tests for DH came back positive, and later celiac tests came back positive.

According to Dr. Dan Leffler, a GI/celiac expert at Beth Israel Deaconess Medical Center in Boston, “DH is a specific manifestation of Celiac Disease.” Celiac and DH are both the result of the body’s reaction to the immunoglobulin A (IgA) antibody, which is produced in an abnormal immune response to the presence of gluten: in the celiac, the antibody transforms from a benign protein to a toxin. “Skin happens to have antibodies most closely related to those in the stomach,” Dr. Leffler explains, so while one celiac may show inflammation solely in the gut, another may produce inflammation in the form of a DH rash on the skin.

As is the case for celiacs who show symptoms in the gut, the only way to reduce and remove the damage done by IgA antibodies is a life-long gluten-free diet. Patients may seek immediate and temporary relief in Dapsone, but this antibacterial pharmaceutical medication can be harsh on the liver. Patients typically only stay on Dapsone for a period of about six months-generally the amount of time it takes IgA deposits to leave the skin.

Melinda Dennis, Nutrition Coordinator at the Celiac Center at Beth Israel Deaconess Medical Center, stresses the importance of nutritional therapy as “the only way to heal the lesions. Though going gluten-free can be overwhelming, getting rid of DH, which can cover large amounts of the body, even the scalp, is a big motivating factor.”

According to Dennis, the positive effects of going gluten-free are often seen in the GI system before the skin. “IgA in the skin takes longer to clear up, so it often takes a few months, though it depends on the individual, the severity of the rash, and the scars and scabs associated with scratching the lesions,” Dennis advises. It is important to note that excessive amounts of iodine, which can be found in seaweed, fish, and milk, can for some reason actually exacerbate the DH rash.

Unfortunately, data explaining why DH affects only 20-25% of celiacs is limited. There is not much information on or awareness of DH, and as a result, doctors are more likely to incorrectly diagnose the problem. “Dermatologists are slowly becoming more aware,” Dr. Leffler explains; “however, the problem starts at primary care. It’s difficult to add more problems, more things to diagnose, to [the burdens of these physicians].”

Patients are encouraged to take a pro-active approach and stand up for themselves, much as Beth Triner did in 2004. After an incorrectly performed biopsy by her physician, Triner was referred to a gastroenterologist and a dermatologist. “Go straight to the dermatologist to get the biopsy,” Triner recommends to anyone who thinks he or she may be struggling with DH-like symptoms. “For patients with typical symptoms but an unexplained negative blood test, it is still wise to do a biopsy.”

A proper biopsy is imperative to diagnose DH. Triner, whose physician performed an incorrect biopsy, thereby slowing her diagnosing and healing process, asserts doctors “should not try to diagnose a lesion [in isolation]. They must also do a biopsy of unaffected skin next to an IgA deposit and perform a very specific process called direct immunoflourescence.”

Dermatitis herpetiformis has proven to be another branch of celiac disease that desperately needs a campaign for awareness. To “g.i.” celiacs and non-celiacs alike, DH is a surprising discovery: the idea that the gut and skin can both be affected by gluten is astonishing. Unfortunately for general care physicians, DH is another affliction to add to the list of things needing quick and efficient diagnosis. As a result, patients need to be proactive with their health and spark the awareness. Know your health condition and improve your life! It may be as simple as a gluten-free diet.

For me, now; 4 weeks after my “glutening” on vacation, my mouth sores have just cleared up but I still have the DH rash all over my scalp, it hurts to wash and comb my hair and I also have the rash on my buttocks.  In the past it has taken 6 months or more for it to clear up. For more information, see our Resources Page on our website! (see Blog Post: “Maureen Gets Glutened on Vacation”)

Autism, Leaky Gut and Gluten Sensitivity

Dr. Fasano Talks About Leaky Gut & Gluten Sensitivity
(Source: Gluten Free Society; Dr. Fasano Discusses Leaky Gut w/ Dr. Osborne)

Taken from our August 2012 Newsletter

As many of you are aware, members of my family are touched by Autism, Gluten Sensitivity, Celiac Disease and Autoimmune Diseases. I find that this is the case with many of our customers. Every day I hear stories from customers about the many years it has taken to get a diagnosis, or a proper diagnosis, only to find relief of their symptoms on a  Gluten-Free and/or other allergen free diets.  You really need to know this information if you or someone you love is touched by any of the above including Celiac or just have another autoimmune disease like Diabetes, Hashimoto’s Thyroiditis or even if you just have bacteria in the gut!

Multiple research studies have linked gluten to the condition known as intestinal permeability, AKA: Leaky Gut Syndrome.  Dr. Alessio Fasano is the head of the MassGeneral Hospital for Children’s Celiac Research Center and is responsible for discovering the gluten/leaky gut connection.

Many assume that Celiac Disease (CD) and Gluten Sensitivity (GS) are the same thing and they are not.  Gluten impacts the villi of the small intestine and has been shown to affect the body in many ways…(there are over 300 signs and symptoms of CD) and these differences account for the massive failure of doctors to diagnose gluten sensitivity. Many people with GS exhibit the same symptoms without having tested positive for CD and they respond to a Gluten Free Diet.

Below are the environmental triggers to intestinal permeability (Leaky Gut). Normally, I would just post a link, but I would like you to look at this and be able to understand it.  This information has been taken directly from the article named above. If your doctor will not test you or your child, print this out and take it to him or her or find a doctor who knows what they are doing.

Factors Affecting Mucosal Immune System Resulting in Intestinal Barrier Dysfunction, Autoimmunity and Nervous System Abnormalities:

 

  Dietary Proteins & Peptides     Antibodies   Drugs & Xenobiotics     Physical Stress

Infections        Cytokines        Neurotransmitters       Enzymes

 (Gluten Contributes to all of the above mechanisms)

Breakdown of Mucosa, IgA and Tight Junction Proteins

Permeability Increase

 Intestinal Barrier Dysfunction

Food Allergy and Intolerance

Immune System Abnormalities

Autoimmunity

Influence on the Blood-Brain Barrier and Neuroautoimmunity

How Does Gluten Play a Role in All of These Factors?

  1. Gluten – Gluten directly impacts the intestinal lining through zonulin production. Zonulin is a protein that directly causes leaky gut.
  2. Antibodies – Gluten contributes to the formation antibodies. Antibodies can cause the secretion of inflammatory chemicals leading to tissue damage. Additionally, through a process called molecular mimicry, antibodies can cross react with the tissues of the body causing autoimmune disease. Lab tests measuring these antibodies are typically not associated with gluten because most doctors are not trained adequately to identify the connection.
  3. Medications – Many medications commonly contain gluten leading to a direct effect. However, many chronic health conditions caused by gluten sensitivity are misdiagnosed leading to medicine prescriptions that are not only unnecessary, but can be detrimental to the gastrointestinal tract. Anti-acid medications are a common example. These medications predispose to infection and lead to abnormal bacteria presence in the gut. Over utilization of antibiotics to treat viral infection is another example.
  4. Stress – Although not a physical stressor, gluten is a chemical stressor on the body. Chemical stress comes in many forms. One of them is vitamin and mineral deficiency. Loss of key nutrients causes a fundamental breakdown in the body’s ability to modulate the healing and repair process.
  5. Bacteria – Gluten ingestion causes detrimental changes in intestinal flora (AKA gut dysbiosis) predisposing to infection. This is one of the reasons why so many yogurt companies are adding beneficial bacteria to their products. Gut dysbiosis is an epidemic in the U.S.
  6. Cytokines – Gluten induces the production of pro-inflammatory cytokines (chemicals that damage cells).
  7. Neurotransmitters – Gluten causes neurochemical changes in the production of neurotransmitters (chemicals that allow the nervous system to communicate). Examples include: serotonin, dopamine, acetylcholine, epinephrine, and histamine. Gluten is also a neurotoxin that has been shown to damage nerve tissue. This is the reason so many with neurological disease (autism, ADD, bipolar, schizophrenia, neuropathy, epilepsy, etc.) do well on a gluten free diet.
  8. Digestive chemicals – Gluten can damage the intestine, the pancreas, the liver, and the gall bladder. All of these organs play a pivotal role in the body’s ability to produce digestive chemicals and enzymes. When this mechanism is compromised, digestive processes start to break down and become ineffective.

Sum it all up –

“Leaky gut contributes to autoimmune disease. The only known cause for any autoimmune disease is gluten sensitivity. We are blind fools to ignore this connection because it does not fit the status quo of the allopathic medical paradigm.” If you have autoimmune disease and have not investigated gluten sensitivity as a contributing factor, you should get tested.  http://www.glutenfreesociety.org/gluten-free-society-blog/dr-fasano-discusses-leaky-gut-with-dr-osborne/

Dr. Fasano: Studying Autism,  Leaky Gut & Gluten Sensitivity
According to Dr Fasano in an interview with Allergic Living, Spring 2012 issue: “An Autism Answer?“, his preliminary observations were that a gluten-free diet may help about 20 percent of the children with Autism Spectrum Disorder or ASD, which is really a catch all term used for mysterious developmental conditions that range in severity and are characterized by varying degrees of social deficits and repetitive behaviors.

Fasano is a lead scientist in two studies that are exploring the links between general gastrointestinal dysfunction and ASD. Investigators from the Celiac Disease Center , the University of California at Davis and the California Institute of Technology are now studying the biological makeup of the guts of children with ASD and try to confirm the suspected biomarkers of gluten sensitivity in these kids and if successful, they will put the kids with those biomarkers on a gluten free diet and observe to see what happens to their symptoms.

For years, autism was only considered a neurological condition, but then Dr.. Stanley Feingold of UCLA began studying the role of bacteria and the gut. Dr Fasano and his colleagues are moving that research forward, studying “leaky gut” , which explains at least a significant part of the disordered spectrum. He is exploring the links between a genetic predisposition for ASD and environmental triggers like nutrients and “leaky gut syndrome”, which he knows occurs in celiac disease and also in gluten sensitivity.

“Fasano believes that inflamed cells in the gut make it through the bloodstream to the brain, causing ASD in the group of children with genetic predisposition.” At least half of the kids on the spectrum are thought to have some kind of gastric issue. Fasano is testing this theory as many parents have claimed success after placing their children with ASD on a strict gluten and casein free diet. (My nephew has had success with complete remission of his ASD Symptoms (PDD-NOS) by following a GFCF Diet and the results were astonishing for all to witness, his teachers could not believe he was the same child.)

Fasano suspects that “no matter what the cause, leaky gut syndrome inevitably leads to diverse health problems because all sorts of bad things get through to the rest of the body.” The first challenge is to identify a specific combination of “bad bacteria” that causes the leaky gut, which in turn leads to inflammation and finally to ASD.  “The Gut is not like Las Vegas. What happens in the gut does not stay in the gut”. Just like in Celiac Disease, some of these immune cells will migrate to other areas of the body, including the brain.” The few autopsy reports he has seen of children with ASD indicate that they had inflammation in their Brains and he wants to know how it happened and how we can prevent it.

Celiac Disease and Liver Abnormalities

Celiac Disease & Liver Disease, A Common Combination (from March 2014 Newsletter):  I see many customers who tell me that their only symptom of Celiac Disease was from a blood test that showed liver abnormalities.  One is a Doctor, Endocrinologist, who would not let the unexplained liver abnormalities slide. He pursued this and was surprised to find the link to Celiac Disease, he was tested for Celiac Disease and was positive.

Like the rest of your body, your liver is not immune to Celiac Disease. It is not uncommon for those just diagnosed with Celiac Disease to hear that they have slightly elevated liver enzymes. Or for the elevated liver enzymes to be found prior to the Celiac Disease. However, once the gluten-free diet is in place the levels usually return to normal.  Click on the link below for more information:

http://celiacdisease.about.com/od/commoncomplicationsofcd/a/Celiac-Disease-Liver-Diseases.htm

EOE; “When Food Becomes Foe”

EOE: When Food  Becomes Foe! (From October 2014 Newsletter)
Eosiniphilic Esophagitis is very real.  We see many children in here with EOE and some also have Celiac Disease and Food Allergies and are on a feeding tube too!  Many times their pediatrician dismissed it as being a “picky eater”. EoE strikes young and old.
EoE is Eosinophilic Esophagitis, which is basically a chronic condition where the esophagus can become swollen. A biopsy is done to see if eosinophil (white blood cells) are present in the esophagus. EoE is the most common form of the rare EGID’s (Eosinophilic Gastrointestinal Disorders), These cells are found in the blood and in tissues and basically will defend the body against bacterias, viruses and parasites. However an increased number of them can be found in the Esophagus, stomach, intestines, and in the bloodstream and in certain organs.
Food can get stuck in the throat, there can be trouble swallowing, heart burn and chest pain. It can be found in the young and the old, seeing a specialist and getting the biopsy is the only way to find out if this is what the problem is!  “Unlike food anaphylaxis – the acute allergic reaction – these patients have chronic activation of the adaptive immune system,” says Rothenberg. “It’s typically not IgE and mast cell activation, but chronic, delayed hypersensitivity that’s triggered by the adaptive T-cells which are responding to the food triggers.” Often those affected have reactions to multiple foods or groups of foods.
Read this article from Allergic Living about getting the diagnosis.