New Celiac and Autism Research

Every year I get my fundraising letter from Dr Fasano at the Celiac Center at UMass. What I love about the letter is that he highlights some of the studies that they are doing at this time. They are doing some really cool stuff! (what I hate is that it comes on paper in the mail, so I had to paraphrase and type all of this stuff into the computer rather than give you a link to click on) Once again; I am predicting that many of the big breakthroughs on celiac and autism will come from Dr Fasano and the gang at UMASS Center for Celiac Research and Treatment.

-Collecting Diapers for Celiac Research for their  Celiac, Genomic, Environmental, Microbiome and Metabolomic Study. Basically, they are collecting stool, blood and other tissue samples from infants and mothers from the US, Italy and Spain. They have more than half of the 500 babies already enrolled. The goal is to understand why some people who are genetically at-risk will go on to develop celiac disease; while others who are at risk don’t develop it. By studying many factors along with the microbial colonies in the gut, they hope to ultimately prevent celiac disease before it begins. Well, if I was a baby and had a diaper, I would enroll myself in this study.

-Building an Intestine in the Lab where they are using intestinal tissue from volunteers to grow intestinal “organoids”. They use the 3D mini organoids to study the effects of different drugs and pre/probiotics on the human intestine. I am glad to see this study happening because I remember Dr Fasano saying on one of his visits to the cafe that his fear is that pre and probiotics may be overused and we might become immune to them like what is happening with antibiotics.

-Connecting the Mind and the Gut: the “enteric nervous system” is like our “little brain: in our guts and it’s communication with our “big brain” can have enormous effects on our mood and health.  I remember Dr Fasano saying “the gut is not like Las Vegas; what happens in the gut does not stay in the gut”.  Parents of kids with Autism have been saying this for about 20 years!  I am so glad to see this area being really researched. Recent results (Dr MR Fiorentino’s lab) showed an altered blood-brain barrier and impaired intestinal barrier could very well play a role in neuroinflammation in those with Autism Spectrum Disorders. They hope to make significant contributions to discovering a mechanism that could be used for prevention. (The belief used to be that the body and brain have different immune systems and are separate and therefore don’t communicate; but researchers at UVA discovered the link via the lymph nodes. I blogged about this 2 years ago)

-Celiac Education and Outreach: Celiac Symposium last April and outreach and donations for food for hurricane victims.

The Center for Celiac Research and Treatment is dedicated to improving the quality of life for patients with celiac disease, while learning the cause of the disease and finding a cure.  However, due to reductions in the NIH  (National Institute of Health) Budget they are reliant more than ever before on donations!  

This is one cause that I scrape up some money to support each year.  donate here

Learn More Here

 

“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

 

 

10 Healthy Gut Supplements; What They Do for You!

In the latest issue of Simply Gluten Free Magazine, Dr.Alexander Shikhman shares some great information about the top 10 healthy gut supplements.  If you are like me, you are probably familiar with some of these but don’t really understand what they actually do for your digestive health. This will definitely be an eye opener for you; it definitely was for me. So, I decided to paraphrase it for all of you.

1. Probiotics: live microorganisms that will improve our microbial balance and suppress pathogenic microorganisms in our intestines (sometimes referred to as our microbiom).  We can get them directly from live fermented foods like sauerkraut, pickled vegetables, buttermilk, GF soy sauce, kimchi and yogurts or we can get them though supplements. If we go the supplement route, we need to understand how they are measured..which is by CFU’s or colony forming units. For gut maintenance use 20-25 million CFU’s daily. During antibiotic treatment we should increase that dose to 100 billion CFU’s daily. If you have Candida (chronic yeast infection), colitis or leaky gut; you should take 100-500 billion CFU’s daily. (I buy True Nature Probiotic at Costco and it is in a blue box and is gluten-free, dairy-free and soy-free)
2. Prebiotics: non-digestible food ingredients (carbohydrate based) and they stimulate the growth of beneficial bacteria in our intestinal tract. They are not live microorganisms; actually they are heat resistant fiber like substances! Basically, they increase production of short-chain fatty acids by stimulated bacteria that will feed normal gut microbiota; they provide energy supply to the cells that form the intestinal lining. They are found naturally in foods like leeks, onions garlic, asparagus, artichokes and gluten-free brewer’s yeast. They also facilitate absorption of calcium, magnesium and vitamin D and stimulate mucosal immune responses, reduce inflammation, prevent colon cancer and normalize our bowel movements! (Who knew? Yup, I gotta get some of these.) But wait, there is more…they should include mannan-oligisaccharides (MOS) and galacto-olifosaccharides (GOS). Daily dose varies between 1,000 to 5,000 milligrams.
3. Digestive Enzymes: proteins that break down large food molecules into smaller fragments in order to aide in their absorption by our bodies.  They are found naturally in our saliva, stomach and pancreatic juices and in secretions in the small and large intestines.  However, how well we produce these proteins is really age dependent. As we age, our production of these enzymes gets sluggish so as we age we  will require external digestive enzymes in the form of micronutrients which are available from animal or plant based sources. Most people don’t know this part: If you eat a high protein diet, you should use an enzyme with a high protease concentration. For high fat diets; you should consume one with a high lipase concentration. The amount should be proportional to the meal that you are consuming.
4. Betaine HCL: naturally occurring and found in lots of foods such as beets and spinach. Betaine HCL acts as a gastric juice acidifier (it lowers our gastric pH). It activates gastric protein that degrades enzymes and will stimulate the entire digestive process. Production of this acid declines as we age and makes it difficult to digest protein rich foods. It is recommended for those on high protein diets and is take before meals in amount of 400 to 600 milligrams per meal. (cannot be taken together with anti-inflammatory drugs)
5. Magnesium: controls gastric acid production, gastric emptying, intestinal motility and bile secretion along with our digestive enzyme production. Deficiency symptoms might include constipation, bloating, indigestion and muscle cramps.  It is found in unrefined grains, seeds, cocoa, nuts, almonds and green leafy veggies. We only absorb about 2/3 of what we consume! Dosage would be 250 to 500mg per day.
6. Bioflavanoids: stimulate bile production, improve circulation in intestines, optimize mucosal immune response, inhibit histamine, suppress yeast overgrowth, enhance toxin elimination as well as prevent inflammation. They are usually citrus or quercetin with dosage of 500 mg to 2 grams.
7. Turmeric: comes from curcumin and it stimulates the gall bladder to make bile and breakdown large fat globs and improves digestion. It also reduces inflammation in our digestive tracts and is often used to treat colitis. Daily dose can range from 1 to 5 grams. (I don’t have a gall bladder, not sure if this would help me)
8. Glutamine: acts like a fuel and is an important source of nitrogen for the lining of our small intestine and is key in maintaining our mucosal cell integrity and the function of our gut barrier. It stabilizes intestinal permeability  and is used for prevention of leaky gut syndrome. Dosage is 500 mg to 10 g, depending on current gut health.
9. Butyrate: (Butyric Acid) is a short chain fatty acid whose salts are know as butyrates which are produced by fermentation of dietary fibers in the GI tract. They control intestinal and colon permeability and aid in controlling inflammation. This deficiency is often associated with leaky gut syndrome. Daily requirements vary based on health of the diet and health of the digestive system. Dosages can range from several hundred to several thousand milligrams. (magnesium and calcium salts are more slowly absorbed than the sodium and potassium forms. Sodium and potassium are taken during the day when the gut cycle is much more active…calcium and magnesium salts are taken at night.
10. Triphala: acts like a digestive cleanser that promotes contractions that will move the food through the digestive tract and will aid in bowel functions.  It will also improve circulation and liver function, normalizes stress response and improve adrenal function as well as reduce our cholesterol. It also has anti-microbial, anti-inflammatory and cancer preventing characteristics. Consumption is 500-1000 mg before each meal and 1000-2000 mg before bed.  

As always, contact your physician before starting any supplement; I know I will be talking to my physician about this. For more information about Dr. Alexander Shikhman (Board Certified in Internal Medicine and Rheumatology) and founder of The Institute for Specialized Medicine and Gluten-Free Remedies. All of his supplements are certified GF to 5ppm by the Celiac Support Association (CSA).

Click Here for IFSMed                             Click Here for Gluten Free Remedies

 

Voices For Autism:

As many of you know, I have two nephews with Autism and many children with Autism also follow a Gluten Free diet due to Celiac Disease or Gluten Sensitivity. I try to keep you all informed about what is new in the areas of Autism research, etc. I had the pleasure of interviewing Stacey Stirmer about the non-profit;  Voices For Autism based here in Howard County, MD.

1) What inspired you to found your non-profit, Voices for Autism?

My husband Lloyd and I decided to establish our own non-profit foundation to raise not only money, but awareness and acceptance of people with autism as well. Although autism is the fastest growing developmental disability in our country, it’s also the most underfunded.

Our mission, at Voices for Autism, is to raise money, awareness and acceptance of individuals and families affected by autism. In addition to raising awareness, we hope to promote the value, acceptance, and inclusion of people living with autism. We want to see individuals on the spectrum achieve their highest level of independence within their home, school and community.

Voices for Autism would like to help better the future for individuals and families who are affected by autism.

 2) What do you want the general public to understand about Autism? 

Autism is a spectrum disorder. Like fingerprints, no two people with autism are exactly the same. There are several characteristics that are associated with autism. These include impaired development in social interaction, communication, and behavior.

What I want most for people to understand is that individuals on the autism spectrum are differently-abled than the general population, but they are still capable of learning, working and living happy, meaningful lives. They are loving, breathing human beings that deserve the same love and respect as the anyone else does. Personally, I don’t want anyone to look at my child as “broken”. He is definitely NOT broken. He’s perfect just the way that he is. One of the many things that my son has taught me is the true meaning of unconditional love.

3) Where do contributions to Voices for Autism go?

100% of money raised will be donated to Autism Speaks. Now in it’s 10th year, Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

4) This past April I had the pleasure of having Dr Alessio Fasano (head of the Center for Celiac Research at Mass General Children’s Hospital in Boston) in for dinner again and was able to ask him some questions. Most of my readers are aware that I have two nephews with Autism, one PDD NOS and one with Asperger’s. I asked Dr Fasano about his ongoing studies with Autism Speaks. He said that 5% of children with Autism have Celiac Disease and 95% have gluten sensitivity. He also stated that they know gluten (the protein in wheat, rye and barley) is a factor along with Leaky Gut Syndrome; but they don’t know why and studies are ongoing. This gives some support to those who have had a positive experience after putting their Autistic child on a strict diet that is free of Gluten (some also remove Dairy and Soy). Is this something you have tried with your son? 

We have not tried any type of diet modification with our son. He has never had any of the negative behaviors or stomach issues that have prompted many people to try going gluten free. I know that a lot of his friends follow the gluten-free diet and have had great success with it.

5) I hear you have an incredible fundraiser going on this month, would you share some details?

Yes! We are holding our first fundraiser on September 24^th at Bethesda Blues and Jazz Club in Bethesda, Md. We are featuring The B Street Band, which is the original Bruce Springsteen tribute band. For those who have never seen this band, they are amazing!

There will be dinner stations as well as an open bar (beer & wine ). We will also be having a silent auction. Check out our website and see some of the great items that we will be auctioning off. Click Here  Then, click on Sponsors and Donations.

6) If someone can’t attend the fundraiser, what are some other ways they can help or get involved?

If someone can’t attend but would like to help, they can donate either online via paypal or by check mailed to the address stated on the website.   They could also help spread the word about our event. Tickets will be on sale through September 16^th. We will not be able to sell tickets at the door due to the club’s request for a final count one week prior to the event.

7) Where do you see the charity in five years?

This is our first year as a non-profit charitable foundation. My hope is that we will continue to grow and make a difference in the lives of individuals who are living with autism and their families.

It was great to chat with Stacey about this wonderful charity and I hope you can help in some way. The fundraiser will be awesome; I have seen this band twice and they are excellent!

 

Vitamin D: “You Are What You Absorb!”

“You are what you absorb!” If you are eating foods rich in Vitamin D and are not absorbing it, you are only as good as what you are able to absorb! (Think Celiac, think Leaky Gut or Gluten Intolerance/Sensitivity). Vitamin D plays a big role in our immune system, our hearts, bone strength and even cancer.  Do you know your levels? If not, you should ask your doctor to order the blood work the next time you are in for a check up.

I will go over why we have Vitamin D Deficiencies, Symptoms of Deficiencies, How Much Vit D is enough and How Much is Too Much; or toxic. (Recently, my doctor had to reduce my Rx of Vit D) You will see that it really depends on who is looking at your levels! I use myself as an example and also went to several different sources for this blog post and I think you will find the information very interesting.

First, I will be giving you information that I get from Amy Myers, MD.  This is the most thorough information I have seen on Vitamin D and it is easy to read and understand, even if you don’t have the letters “MD” after your name.  Everyone should get their levels checked because 36% of healthy adolescents and 57% of adults in the US have a deficiency. According to Dr Myers, they believe those numbers may be even higher because the previous recommended levels of vitamin D were too low!

Dr Myers says; “The widespread deficiency of Vitamin D is concerning because it plays an important role in many areas of our health. It contributes to bone strength, heart health, and cancer prevention. And, it plays a hugely important role in your immune system and can be a determining factor in whether or not you develop an autoimmune disease.”

There are 3 reasons this occurs:

1. We don’t get enough sun exposure, we do we put sunscreen on & reduce it by 90%

2. Our diets lack vitamin D (salmon, fish liver oil, organ meats, beef liver, egg yolk)

3. Fat Malabsorption

The two foods most fortified with Vitamin D are breakfast cereals and milk.  Mmmmm, I am screwed because cereals contain gluten and milk is; well, it is milk and I can’t have that!

Fat Malabsorption: One thing that surprised me is that she talked about fat malabsorption. Vitamin D is fat soluable. So, that means that your gut will have to absorb fat in order to absorb Vitamin D. (Could this be why my cholesterol is low; usually between 118-127?)

–Vitamin D also needs Vitamin K because it works in tandem with Vitamin D and makes sure the Vitamin D ends up in our bones and not in our arteries.  She also says to make sure we have Vitamin E and Vitamin A because they work with Vitamin D as well.

I know I have fat malabsorption. This, has always been a problem for me and it also contributed to a lot of clogged toilets prior to my celiac diagnosis. If I eat anything fatty, I see it in the toilet, it looks like a bunch of oily and undigested fat. (I ate some wings on the Sunday of Memorial Weekend and it is a good thing we were at home on Memorial Day!)

Vitamin D is a fat-soluble vitamin, meaning your gut has to be able to absorb dietary fat in order to absorb Vitamin D. The saying goes “you are what you eat,” but in reality, Dr Myers says that “you are what you absorb”.  She goes on to say; “if you have a leaky gut because of inflammatory foods such as gluten, infections, or toxins, your ability to absorb nutrients and vitamins may be severely compromised”.

I had to beg a doctor to check my levels and when they were finally checked, my results were  2 and a 7;  I was given an Rx . I was definitely feeling better, my neuropathy went away and on my last check up, I was at 50 thanks to 50,000 IU Rx supplementation. But I was having some complications that my Endocrinologist was not taking into consideration. (more on this later)

However, Dr Myers suggest we aim for between 60-90 ng/ml. (I address the different recommended levels in a chart below) For more information from Dr Amy Myers on Vitamin D and it’s Impact on your Immune System (Protective Immunity and it’s role in Autoimmune Disease and How to Increase your Vitamin D with Vitamin K) Click Here for info from Dr Amy Myers

Symptoms of Vitamin D Deficiency?

Vit D Deficiency is common in people with untreated Celiac Disease but you don’t have to be a Celiac to have a Vitamin D deficiency; which effects digestive, glandular, immune, integumentary, muscular, nervous and skeletal systems via:

Impaired bone mineralization, muscle weakness, alterations in maintenance of calcium and phosphorous hemeostasis, metabolic functions, male reproduction and is implicated in psoriasis.  Also, Bone Pain, Easy Fractures, osteopenia/osteoporosis, (bone thinning), osteomalacia (bone softening), in adults, affecting the spine with vertical shortening of the vertabrae, the pelvis with flattening and narrowing of the pelvic outlet and the lower extremities with bowing in the long bones, muscle weakness, defective coordination for walking, osteomalacic myopathy and spasm, psoriasis, decreased male fertility.

In young children, development of rickets with bone bending of the weak shaft and delayed walking in 1-4 year olds. In older children walking is painful with development of bow-legs and knock-knees.

*These symptoms are often seen as a result of  malabsorption in Celiac Disease. Celiac related deficiency responds to the gluten free diet and supplementation produces rapid resolution of symptoms.  Source: Recognizing Celiac Disease by Cleo J. Libonati, RN, BSN

HOW MUCH IS ENOUGH VITAMIN D?

There are different recommended levels depending on who is looking at your results as seen in the chart below. My endocrinologist was fine with me at 50 ng/ml; see the chart below. However, my Internist (my new General Practitioner) thinks that is too high. (this will all make sense at the end of this) I did some checking and all sources say something different.  Below is what I found:

NIH (National Institute of Health) also has some different info: 

nmol/L**	ng/mL*	Health status
<30	<12	Associated with vitamin D deficiency, leading to rickets in infants and children and osteomalacia in adults
30 to <50	12 to <20	Generally considered inadequate for bone and overall health in healthy individuals
≥50	≥20	Generally considered adequate for bone and overall health in healthy individuals
>125	>50	Emerging evidence links potential adverse effects to such high levels, particularly >150 nmol/L (>60 ng/mL)

* Serum concentrations of 25(OH)D are reported in both nanomoles
per liter (nmol/L) and nanograms per milliliter (ng/mL).
** 1 nmol/L = 0.4 ng/mL

Reference Intakes

Intake reference values for vitamin D and other nutrients are provided in the Dietary Reference Intakes (DRIs) developed by the Food and Nutrition Board (FNB) at the Institute of Medicine of The National Academies (formerly National Academy of Sciences) [1]. DRI is the general term for a set of reference values used to plan and assess nutrient intakes of healthy people. These values, which vary by age and gender, include:

• Recommended Dietary Allowance (RDA): average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy people.
• Adequate Intake (AI): established when evidence is insufficient to develop an RDA and is set at a level assumed to ensure nutritional adequacy.
• Tolerable Upper Intake Level (UL): maximum daily intake unlikely to cause adverse health effects [1].

The FNB established an RDA for vitamin D representing a daily intake that is sufficient to maintain bone health and normal calcium metabolism in healthy people. RDAs for vitamin D are listed in both International Units (IUs) and micrograms (mcg); the biological activity of 40 IU is equal to 1 mcg (Table 2). Even though sunlight may be a major source of vitamin D for some, the vitamin D RDAs are set on the basis of minimal sun exposure [1].

Table 2: Recommended Dietary Allowances (RDAs) for Vitamin D [1]

Age	Male	Female	Pregnancy	Lactation
0–12 months*	400 IU (10 mcg)	400 IU (10 mcg)
1–13 years	600 IU (15 mcg)	600 IU (15 mcg)
14–18 years	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)
19–50 years	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)
51–70 years	600 IU (15 mcg)	600 IU (15 mcg)
>70 years	800 IU (20 mcg)	800 IU (20 mcg)

* Adequate Intake (AI) Click Here to go to NIH

Symptoms of Too Much Vitamin D (toxicity):

According to the Mayo Clinic, the main consequence of vitamin D toxicity is “a buildup of calcium in your blood (hypercalcemia), which can cause poor appetite, nausea and vomiting. Weakness, frequent urination and kidney problems also may occur. Although vitamin D toxicity is uncommon even among people who take supplements, you may be at greater risk if you have health problems, such as liver or kidney conditions, or if you take thiazide-type diuretics. As always, talk to your doctor before taking vitamin and mineral supplements.”  Mayo Clinic Too Much D

So, who do you listen to? Well you always listen to your doctor, but again, I think you need to listen to your body (and so does your doctor). On the mega Rx dose of Vitamin D, I was definitely having increased urination, more frequent kidney stones and I also take two thiazide-type diuretics.  So, my GP (internist) looked at my numbers and the other factors adversely  affecting my health and reduced my dosage. We will do blood work in 6 weeks to see what the result is, but I have not had any major stones. (FYI: I recently changed my GP to an Internist who looks at the whole picture and how everything affects my overall health. Not only does she understand Celiac Disease, she and her daughter have Celiac Disease and I believe this is the best decision that I have made for my health!)

I hope you found this information helpful.

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Guess Who Came to Dinner?

Yes, that is Dr. Alessio Fasano, of the Center for Celiac Research and Treatment at Mass General. We had the pleasure of having Dr Fasano and his son back in the cafe for dinner this week. I was able to ask him a few questions in between.

I chose the questions that I get asked about the most by customers and those that affect me as well. My questions were about Gluten/Celiac Disease and it’s role in Autism, our Kidneys, our Skin and our Brains. I also asked about Glyphosate (Round Up) and it role, if any, in Celiac Disease.

Autism:

As many of you know, I have two nephews with Autism, so I have always been very interested in the connection between Celiac Disease, Gluten and Autism. Dr Fasano and Autism Speaks have been looking for a connection between Autism and Celiac Disease anf gluten . As of now, Dr. Fasano says that “about 5% of Children with Autism have Celiac Disease and most are Gluten Intolerant.”  Dr Fasano says “we know Gluten is a factor in Autism but we don’t know why.”

Glyphosate (Round Up) Sprayed on Crops:

Over the past year or so there has been a lot of information circulating on the web about Glyphosate, which is the ingredient used in Round Up weed killer.  It is also used on our crops to increase the yield before harvesting. Corn is one of those crops. So, I asked him about the connection, if any, between glyphosate (Round Up) being sprayed on our crops and if it is contributing to gut permeability (leaky gut) leaving us open to Celiac Disease.  He said that “we don’t know enough about it yet”. That tells me there are more studies that need to be done.

Celiac Reactions & Complications; Kidneys, Skin and Brain:

Kidneys: I also shared with Dr Fasano what my Nephrologist has told me about Celiac Disease and IgA Nephropathy (Berger’s Disease); the filters on my kidneys don’t work right and the little doors to the filters are getting the wrong message. So, I asked him what his thoughts were. He said;  “absolutely, it is very closely related to Celiac and sometimes the soldiers (immune cells), leave the intestine and attack other tissues, like those in the kidneys” (gallbladder, thyroid, brain, etc.).

I was telling him about my severe reaction after accidentally getting “glutened” in Jan 2015 and a new symptom I had after this episode. Normally for me, within a few hours I have severe acid reflux, the next morning I have a migraine followed by diarrhea and vomiting at the same time, then I get major bloating and knife like pains in my stomach. Then, within 24 hours I get flu like symptoms, severe fatigue and can not get off the couch.

Skin: On about day 3 or 4 I get a Dermatitis Herpetiformis (DH) rash and that itches and oozes and hurts and then the joint pain kicks in. I told him that I had a bad case of DH on my scalp, buttocks and arms and before I could say it he said: “it took 8 months to clear up”.  He was right on the money, I got “glutened” in January (I did a blog post about this) and it did not clear up until the end of August! (It cleared up because I had no further exposure to gluten. DH is most often misdiagnosed as eczema. It (the rash) can be biopsied for a Celiac Diagnosis, if you have this, bring it to you Gastroenterologist’s attention.)

Brain: By day 4 I had Ataxia (walking into walls, tripping and falling and speech issues).  New Symptom for Me: However, this time, by day 5 or so, I had MS like symptoms in my right arm and leg with heavy twitching. I had to pull over and it lasted for several minutes. He said “absolutely, it’s the inflammation; because it can affect the brain”.

I hope you found this information helpful. It was a pleasure having Dr. Fasano and his son back at One Dish Cuisine Cafe, Deli and Bakery! I know you want to know what Dr Fasano had for dinner. He and his son enjoyed our Eggplant Parm. Also, I know someone will say that the cafe looks different in the photo. It does look different because this photo was taken the last time he was here, for his book signing, in 2014.

 

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; 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.)

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.

Dr Fasano Studying Autism, Leaky Gut and Gluten Sensitivity

Dr. Fasano: Studying Autism,  Leaky Gut & Gluten Sensitivity      

From our August 2012 Newsletter
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 (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.

There is no link available to the article. Updates to this information can be found in Dr Fasano’s Book, Gluten Freedom that was released in 2014.

link: http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1723