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.

GF/Food Allergy/Autism Bloggers, How They Help

There is no doubt that, blogging has become huge and it is because all you need is a computer. Anyone can be a blogger..writing about things you are passionate about. Your blog can be all about your family, or child, or job, or hobby, the possibilities are endless.  The best part is that you don’t even need to have followers!

My passions are celiac disease, food allergies and autism. However; I reluctantly moved into the blogging world. For those of you who first started getting my newsletter back in 2010, you know that I put many articles in the newsletter each week. Sometimes it would take me 5 hours to get it all together. My problem was two-fold: I needed to cut back on the content and the newsletter was not archived. This meant that readers would be calling me asking me to email them an old newsletter or article. I had to make it more manageable by having all articles in a central place so my readers could get to new and old information any time.  So, when I had the web-site re-designed, we added a Blog Tab. (I still have not transferred over all articles yet!)

I started reflecting on what GF, Food Allergy  and Autism Bloggers “bring to the table”.  First, they serve as a voice for their communities. These communities offer acceptance, understanding and support 24-7!  You don’t need to wait for the monthly meeting for some support or a sympathetic ear;  you just turn on your computer and you are set. Instant gratification!

This is so important to those with Celiac Disease, Food Allergies and Autism.  Why?  Because if you or a loved one are affected by any of the above, you are subject to scrutiny.  Unfortunately, much of the general public feels that the Gluten Free Diet is just a fad diet, that food allergies are just made up and Autism is just a symptom of a discipline problem that you have with your child.

I can’t tell you how many stories I have of my own about being made fun of, about invalidation and doubt from friends and family.  There are customers who tell me stories of a family member dangling shrimp in front of their child who has a shellfish allergy. The family members and friends who doubt your Celiac Diagnosis and talk behind your back.  The friend or family member who thinks that Autism is made up because “the parent does not want to parent” and hearing “we all did our homework by ourselves growing up…we didn’t need an adult next to us the entire time, he just needs to be disciplined and you need to stop spoiling him and giving into his whims”.  Or we hear, “I know how you feel.”  When they have no idea what you are dealing with.

Well, that is exactly the crap we have to live with folks.  Having bloggers who give a place for sharing and caring in the areas of Celiac Disease, Food Allergies & Autism is so needed and so appreciated.  These bloggers create a community that is so far reaching and inclusive by educating, sharing and giving a voice to those who often have no outlet or support system. Sometimes we just need someone to help us find our sense of humor again.

Why has blogging exploded? Well, sometimes, even our doctors are not a support system…they don’t have the time and in some cases they just don’t have the knowledge; leaving some suffering; un-diagnosed for far too long.  Support groups meet monthly or quarterly and sometimes you just can’t wait that long.  Often, you are in overwhelm and need some support before you explode. You need someone to actually listen to you; not invalidate you. Someone who will actually hear what your are saying; people who are going through the same thing and support you….. via your favorite blogger!

Turn on computer; find favorite blogger and you can be “HEARD” almost immediately! 

Thank you to all of you great bloggers out there. You help keep us sane while dealing with   Gluten-Free Diets, Food Allergies and Autism. Thank you all for being there to catch us when we fall and most importantly educating us and helping us keep our sense of humor .

There are so many great blogs! Here a just a few of my favorites:

GF Blogs: Gluten Dude, Gluten Free Girl, One Dish Cuisine

Food Allergy Blogs: Food Allergy Mama, Allergy Eats (Paul Antico)

Autism Blogs: Autism Daddy, Confessions of an Asperger’s Mom

Click Here to vote for GF Bloggers

support 3

 

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:

Vit D recommended levels

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?

0073_OneDish_6_3_14

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.

 

Public Perception Of Celiac/Food Allergies

restaurant-gluten-free-joke

We all get to that place of utter frustration when it comes to dining out safely.  We walk away shaking our head saying “they just don’t get it”. Why is it so hard to eat out safely and how can we educate the public in order to change this? Let’s explore our plight and several ways that we can change the public’s perception.

Those who have Celiac Disease feel this frustration but we need to remember how much easier it is for those with Celiac Disease (CD) or Gluten Sensitivity (GS) than it is for those with life threatening Food Allergies (FA).  If you have both; it can be next to impossible to dine out. Those with Autism experience this when they put their child on a gluten-free or other special diet.

I feel like the Celiac Community just wants it all and they want it now; not really understanding why it is so hard for a restaurant to safely feed them. (Keep reading, I will tell you the top 4 obstacles to safe food)  Many clearly expect every restaurant to be able to safely serve their dietary needs.  For those with severe food allergies, they know it is life or death for them, so they don’t make such a big deal about it and simply choose to go without because it is safer. Yes, it is hard if you have CD or GS but it is even harder to have FA and that is why those with FA don’t take risks dining out because most places really don’t get it.  Think about it Celiacs; if cross contamination could kill you, would it be worth all of the risks that you take when dining out?

Where is the awareness? In Maryland they passed a Food Allergy Bill, but it is only voluntary. Only 3 of more than 30k restaurants took the training! Mmmm, it seems like the serious nature of a Food Allergy or Celiac Disease is not getting through to the general public.

Then, last month, Ted Cruz (running for president of the US) made an uninformed comment promising that he would not support the military supplying Gluten Free (GF) MRE’s (Meals Ready to Eat) to those who needed them. MRE’s are often used when deployed in remote areas.  This comment hit close to home for me and shows just how ignorant the masses are about Celiac Disease and Food Allergies. (A person with a wheat allergy would need GF MRE’s). I thought to myself; how can anyone be so uninformed? Yet, as I pondered this, Ted Cruz is certainly not alone when it comes to his ignorance about Celiac Disease or Food Allergies.

On Sunday, a friend and customer, Ben Andrasik, stopped in the cafe for a meal and some treats for his kids.  Ben served two tours of duty with the military in Afghanistan and wrote a book about his struggle and survival without GF meals. It gave us a chance to catch up and chat about some things. We discussed the public perception and we both feel that biggest struggle we face is lack of public awareness or understanding of the seriousness of Celiac Disease and Food Allergies. (You can read Ben’s book here at our cafe, it is in our library and it is called Gluten Free in Afghanistan by Cpt B. Donald Andrasik. You will have a chance to win a copy of his book at the end of this post.)

Contrary to what you might think; you can serve in the military if you have Celiac Disease. They just don’t go out of their way to safely feed you.  However, the military will accommodate a person who chooses to be vegan. Mmmmm.

 

The Top 4 Obstacles to Safe Food:

-# 1 Lack of Education of the general public about the seriousness of Celiac Disease and Food Allergies. The general public only hears about people eating gluten free as a diet trendnot as the only prescription to treat Celiac Disease.  In my opinion, that area is where our Celiac non-profits are failing us. The general public does not think Food Allergies are serious until someone they love has an anaphylactic reaction and this is shocking to me.

Let’s explore some statistics in the chart below. Notice how many Americans are living with Celiac, Food Allergies and Autism. Then look at the other diseases and how many are living with them. The numbers are far less for the rare diseases, but we all know what those rare diseases are and would not diminish their legitimacy or the prescription given to those who suffer from them! Since when does the only “prescription” to treat a disease come only in a “pill” or “injection” form from a pharmaceutical company? Why does the lack of a “pill” make Celiac Disease and the Gluten Free Diet not a legitimate disease and treatment?

I put this graphic together back in 2010 and it is still relevant today with a few updates to it…but it is still shocking.

CDGSAutismAllergies Photo

Given the numbers above, you would think that Celiac Disease and Food Allergies would be a top priority in the United States, but they are not viewed as legitimate by the mainstream public! Lets look at the totals as compared to Type 1 Diabetes:

Celiac Disease: 3 Million plus  18 Million Gluten Sensitive  = 21 Million

Food Allergies: 9 Million Adults plus 6 Million Children      = 15 Million

                                                                                                   Total = 36 Million Total

Type 1 Diabetes:                                                                               = 3 Million Total

How did we learn about many of the above rare diseases? Were we taught about them in high school? No. Did we have a family member with one? Possibly.  Primarily, we learned what those rare diseases were by their non-profit organizations and foundations raising awareness in mainstream media; via ads in TV, mainstream magazines and newspapers.

Remember Jerry Lewis doing telethons every Labor Day weekend for Muscular Dystrophy?  We hear about ALS (Lou Gehrig’s Disease), who did not see the “bucket challenge” last year?  All of the above rare diseases have gotten the word out because their non-profit foundations are utilizing mainstream media in addition to marketing to those affected by the disease.

There are just as many people living with Celiac Disease as there are with Diabetes..many have Celiac too, but you would never know it when it comes down to the attention given to each! If Type 1 Diabetes could only be treated by diet and there was no insulin, you bet your “arse”  restaurants would be pandering to this population.  However, Diabetics have two Rx’s; diet and/or insulin. Diabetics control diet by counting carbohydrates & reducing sugar.  Sugar and carbohydrates are required to be disclosed on nutritional labels making it much easier for a person to manage their diabetes.  Yet, a Celiac must avoid Gluten, and is not required to be disclosed on labels. Mmmmm.

#2: Gluten is not required to be labeled or disclosed on nutritional labels. This is the main reason that mainstream restaurants struggle to feed Celiac’s safely! Yes, the Gluten Free Labeling Law passed; but it is not mandatory; it is voluntary only. In the US they only have to disclose wheat! Rye and barley don’t need to be disclosed and gluten can hide in many forms, natural flavors is one place. Mainstream products don’t need to tell you if there is gluten in them or not, they tell you if they want to!  In the US, they have to tell you if the recipe includes the top 8 allergens: wheat, milk, eggs, peanuts, tree nuts, soy, fish, shellfish. Did you notice that rye and barley are not on the required list? (In Europe and Canada this is less of a problem because they label gluten and many additional allergens).

The #3 Reason: Manufacturing companies don’t need to prevent cross contamination! Yes, you read that correctly.  They only have to tell you what is purposely put in the product and if it contains the top 8 allergens. They don’t have to tell you if they accidentally contaminated the product with any allergens or anything else when processing or packaging.  They are also allowed to use the term “natural flavors”; so they don’t give away their “secret” ingredients; which could be anything!

#2 and #3 are why mainstream restaurants can’t safely feed you!  Really, come on, why would you expect them to get it right given the above? Are you having a light bulb moment?

The #4 Reason: We are not being heard by the general public! Currently, our associations are only getting the word out in media that is targeted at those of us already living with Celiac Disease or Food Allergies! We will never be taken seriously if the mainstream public is not educated and the mainstream media is only talking about Gluten-Free Fad Diets rather than Celiac Disease &/or Food Allergies.

Open any GF/AF Magazine and you usually see an ad from one of our associations. However, you don’t see this type of ad in mainstream publications.  So, when a person running for president of the US is clueless about Celiac Disease and does not know that the GF Diet is the only Rx for it..that tells me our message is not being heard by the general public.

On the contrary; if Ted Cruz made a remark like that about diabetics and pledged not to provide insulin or a low carbohydrate MRE’s for diabetics in the military and did not know what diabetes was; we would all say he is clueless and not fit to run for president being so un-informed! The world knows about diabetes. The world and the mainstream media don’t know about Celiac Disease or the seriousness of it because our message is not being heard!  Isn’t that amazing when there are just as many people with Celiac Disease! (not to mention Gluten Sensitivity and Wheat Allergies)

How Do We Get the Attention Needed for Celiac and Food Allergies?

We can whine and complain about not being respected but that does us no good.  What we need to do is demand that our support associations spend some of our donations on a media campaign to get the word out into the mainstream. If you flip through a gluten free magazine or food allergy magazine you see ads for associations.  I would love to see those ads in Time Magazine, People Magazine or in major newspapers. They would just need to gear the ad towards the seriousness and symptoms, thus creating awareness.  By putting the advertising money into mainstream news media; the public will be educated about the seriousness of our plight. It will raise awareness and diagnosis rates! (The Autism community has done a great job about getting their message heard). Even my local Quest Diagnostics advertises symptoms of Celiac Disease and the blood test for it in a big poster in their waiting room.

Our dining out problems won’t be solved until there is a ODC Cafe, Deli, Bakery in every major city or if we change our labeling laws, manufacturing regulation and educate the public about Celiac & Allergens..

Beaver and Wally

“Gee, Wally, I wonder which one will happen first?

“Ah, come on Beaver, I am thinking more ODC’s!”

Without comprehensive changes in all four areas, it is useless. Example: the voluntary GF Labeling Law is not currently enforced because it is voluntary without oversight. Hence; General Mills recalled 1.8 million boxes of not really GF Cheerios.  Mmmmm.

-The general public must be educated about the seriousness of Celiac/Food Allergies.

-We must have stricter labeling; mandatory gluten disclosure and stricter food production laws in order to ensure safe food.

In the US, we united around the task of sending a man to the moon (my uncle was using a “slide rule”, before computers, to do the math in order to make it happen). Somehow, 50+ years later, we can’t unite around educating the general public or passing laws to serve safe food to those with celiac or food allergies.  I hear horror stories from customers who tell me about people saying “nobody had food allergies when I was growing up, they are just made up” or, “a little bit won’t hurt you”.  As I have said before, we can send a man to the moon but we can’t safely feed our people and that is just stupid!

How do we change this?  So, yesterday, when Capt Ben and I were catching up and discussing Ted Cruz’s comments we both agreed that the mainstream does not recognize Celiac Disease as the reason for the GF Diet. We can whine among ourselves or we can ask our associations to put some of our donations towards  a mainstream media campaign and get the word out to the general public!   With Celiac Diease Awareness Month coming up in May, Ben was kind enough to donate 10 books for me to give away for this blog post.

Here is how you win a copy:

Send me your creative suggestions on ways to get the word out and fix the 4 big problems:

  1. How can our associations get the word out to the general public about the seriousness of Celiac Disease and Food Allergies?
  2. What can each of us do to personally further our own cause by spreading awareness?

The 10 best suggestions will get a free copy of Gluten Free in Afghanistan! Email me at onedishcuisine@yahoo.com by Tuesday 4/12/16. Make sure you include your name and a way to contact you if 1 or more of your suggestions wins! (I will post the top suggestions in the next blog post)

Thanks Capt B. Donald Andrasik for your service to our country (a country who is unwilling to serve you a safe meal while you are serving us by defending our freedom)!  Gluten Free in Afghanistan is a great read and it should comfort you to know that Ben survived two tours in Afghanistan.