Testing Food for Presence of Allergens or Gluten

From May 2014 Newsletter:

Food Testing Explained; 0ppm does not exist!
I was surprised to find that many people really don’t understand Food Allergen Testing.  There was a discussion going around on a celiac group recently about people wanting 0 ppm. Many don’t truly understand the testing that is available or the testing that we do here. So, I will explain it to you in a way that is easy to understand:

The FDA has set a threshold for Gluten in Food at 20 ppm or less. (ppm means parts per million).  We are certified to 5ppm for Gluten by the Celiac Support Association (CSA). There is no lab test that detects 0ppm.

There is no threshold set for other food allergens, this is probably due to the different thresholds of sensitivity from person to person.  Also, there is no lab test that detects 0 ppm!

So, when I send out food samples for testing, I am only as good as how low the lab can detect for each allergen.

A result can come back at less than 2.5 ppm (< 2.5ppm).  What that means is that the lab cannot detect any lower than 2.5 ppm. So, it could actually be 2.4ppm or 1ppm, we just don’t know! The level of detection capability is different for each allergen.

If a lab test comes back with an exact number, then that is what it is, I like exact numbers, we know what it is; but there is a margin of error and you can get false positives because the lab has to inject the sample with the allergen in order to even perform the testing. When a false negative occurs, the lab will re-test the samples.Since the FDA does not regulate thresholds for other food allergens, each company has to pick their own standard for their allergen testing. Periodically I will choose items that contain the most ingredients that we use at ODC and send them out to be tested.  I aim for below the lowest level of detection available on each allergen and am pleased with our latest results.

So what does this mean to you, the Celiac or the person with Food Allergies?

The question you need to ask yourself is this:

“When I buy a product that is allergen free, what exactly does that mean?” (you have to ask them)
“How do I know if a company tests their products & what their standards are?” (you have to ask them)

“Where am I safer when I go out to eat; at ODC or at a  restaurant that says they have Allergen Free or GF but don’t test?”  (I would say hands down, at ODC)

Testing costs a lot of money, this last round cost over $3,400.00 for 5 products.

It is not possible to test every single meal, every day in a restaurant. Below is an example of a recent test result:
Results for Mock “Rye” Bread
-Gluten:                       5 ppm                           FDA Standard 20 ppm

Item Tested              Result PPM           Level of Detection PPM
-Milk,Casein,Whey:    <2.5 ppm                     2.5
-Soy:                               <2.5 ppm                     2.5
-Egg:                              <2.5 ppm                      2.5
-Fish:                             <1.4 ppm                       1.4
-Sesame:                       <0.2 ppm                      0.2
-Peanuts:                      <2.5 ppm                       2.5
-Almond:                      <2.5 ppm                       2.5
-Cashew:                       <2.5 ppm                       2.5
-Hazelnut:                     <2.5 ppm                      2.5
-Pistachio:                     <2.5 ppm                      2.5
-Walnut:                       < 0.35 ppm                   0.35

From Gut to Brain, Ataxia and More

This is from our Feb 2012 Newsletter. If you think you have gluten ataxia or balance or coordination issues, speech impairment or any brain involvement when ingesting gluten, this is great information for you to have and it may be worth taking it to your doctor if they don’t seem to be listening to you. This has case studies from Gastroenterologists and Neurologists.

http://www.etseq.urv.es/cdmedics/pdfs/Celiac%20disease%20from%20gut%20to%20brain.pdf

Amazing MRI’s of the brain showing before and after of a person with rapid onset of Ataxia over a period of 15 months.

http://celiacbrain.com/?p=86

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

Food Reactions; Know Which Type You Have!

Food Reactions; Know Which One(s) You Have!
On New Years Eve, my friend and I were talking about food allergies and reactions and I was surprised at how much she really did not know about the different types of reactions to food.  So I wrote about this in my January 2015 newsletter and I have transferred this to my blog.
There is a lot of misunderstanding about food reactions, in providers and patients or, from my point of view; from our customers.  Many come in here and just don’t know what they have.  I am not a doctor and you should listen to your doctor, but in our restaurant we see so many people who are just self diagnosing and that is scary. Please see a doctor. What we do here at One Dish Cuisine Cafe, Deli and Bakery is make safe food for those with Celiac Disease, Gluten Sensitivity, life threatening Food Allergies and EoE.
Below, I  will briefly explain the differences between the different food reactions and urge you to get tested when you are not sure what your issue is.  I will use my own situation to highlight the differences for you.

1) Autoimmune Response; Celiac Disease: This IgA autoimmune response can cause more than 300 signs and symptoms. Celiac Disease is the most common condition that falls into this category.  Basically, there is an autoimmune response to gluten and gliadin which can damage the intestines.  Testing for this is done by a Gastroenterologist through blood work and/or small bowel biopsy. I think you should have both.  10-20% of Celiacs test negative on blood work and positive on biopsy.  See a gastroenterologist who knows the guidelines for diagnosing Celiac Disease and get tested before going on a gluten free diet!  EoE and Celiac Disease and Dermetitis Herpeteformis (DH) are good examples of this and I have Celiac Disease and DH.

2)Food Allergy: Type I immediate IgE hypersensitivity immune response: This reaction typically occurs very quickly (minutes to hours) after eating an offending food; symptoms can be mild or severe. Food allergies can cause anaphylaxis (stopping breathing and death) but they may also experience itchy lips/tongue/throat, stuffy nose, headaches, belly ache, diarrhea, gas, bloating, skin reactions, and sudden fatigue. One mild reaction does not mean the next one will be mild! Testing is typically done through skin tests or IgE blood tests by a doctor/allergist. The majority of food allergies have a quick onset reaction.  If sour cream causes immediate diarrhea, or strawberries make your  lips swell or peanuts close your throat – you are not going to easily forget that because the symptoms occur so quickly and are severe.  IgE food panels can be run to help patients when it’s more difficult to figure out which food is causing their reaction because some may have multiple allergies. IgE testing is run through any standard laboratory and is ordered by a doctor/allergist.

I have an IgE allergy to Milk.  I was always told by doctors that I just had a severe lactose intolerance.  When I was not getting better following my GF Diet in the 90’s; my GI decided to refer me for food allergy testing.  I saw a doctor/allergist and they did skin testing for lots of allergies. When I ingest milk products, pretty quickly, the inside of my ears start to itch, my eyelids swell and I itch all over, followed by severe cramping and pains in my stomach and sometimes I start to sweat and can get irritable. If I have baked cheese or milk, the reaction is much less severe. I am lucky,  but this does not mean an anaphylactic reaction will never happen.  I know that mild reactions can sometimes become severe. I have a similar reaction to sulfites and nitrates, but more of an itching response.  With caffeine it is pretty immediate stomach pain and then sometimes I get hives.

Medications: I have also had immediate reactions to some Medications; Biaxin, Reglan, and Morphine.  For example, with Biaxin I had a less severe reaction to Milk (in the form of lactose) that is used to bind the drug together.

-In 2005 I was given Reglan to settle my stomach before going under anesthesia. I had a severe reaction and was given adrenaline/epinephrine. I am not sure what ingredient I reacted to in the Reglan because the hospital could not tell me what was in it, but they were adamant that I never, ever, ever take it! 
-In 1995 I was given Morphine while in the hospital for gall stones and kidney stones. I had a severe reaction; was given adrenalin/epinephrine to counteract the reaction and was told to never allow anyone to give me Morphine again.  I was really glad that I was in the hospital when I had those reactions and I definitely experienced the “impending sense of doom” that is often said to occur. 
-Codeine was not as severe; it made me itch all over and vomit. 
-Synthroid was prescribed for my Hashimoto’s Thyroiditis and I kept telling my doctor it was making me sick and I was told that there was nothing in it to make me sick. I did my own investigation and found out I was reacting to the lactose used in the pill and had to switch to the generic form made without the lactose. The severe stomach pain and itching ended immediately.

These are examples of immediate reactions.  The problem with medications is that you often have to call the manufacturer to figure out what is in the medication because they don’t have to label medication like they label food.

3) Non-immediate (delayed) IgG & IgA response; known as a food intolerance or food sensitivity:  This is very different from an immediate IgE food allergy response because symptoms may not show up for hours or days; which makes it very difficult to figure out exactly which foods are causing which reaction in the body.  Symptoms of IgG food intolerances/sensitivities include: sore throat, stuffy nose, congestion, headaches, belly aches, constipation, diarrhea, gas, bloating, hormone issues, foggy head, headaches, weight gain, fatigue, joint pain, depression, behavior changes, anxiety, and skin issues.  This is where IgG and IgA food sensitivity testing comes in.  Many doctors are not familiar with this type of reaction because it is not always obvious or life threatening and it is harder to diagnose and some delayed IGA reactions can be very serious; such as EoE!

I have minor delayed reactions with Oats, Corn, Quinoa, Millet and Hemp…I have a gluten like reaction to these, or what I would call a “cross reaction”.  I did strict elimination diets to figure this out. Blood tests for food sensitivities (IgG) are more likely to be run by functional medicine or non traditional doctors and they are not usually covered by insurance.

We have seen a huge increase in customers with food sensitivities or intolerances and they usually come in and claim a food allergy, it is not the same thing folks! There is some conflicting evidence on the comparison of IgG versus IgE and the testing behind it.  Note: being allergic to a food doesn’t mean you are intolerant and being intolerant does not mean you are allergic.  IgG testing is often done by alternative practitioners and is said to diagnose inflammatory responses to foods but those tests are not validated by the FDA and therefore this type of testing is often not covered by insurance.

What is the bottom line here?  Know the difference between them:

-Celiac Disease: diagnosed via blood tests and endoscopy with intestinal biopsy done by a Gastroenterologist. Dermatitis Herpetiformis: itchy skin rash that is the very specific IgA Skin Manifestation of Celiac Disease, diagnosis is done via skin biopsy by a Dermatologist.

-Gluten Sensitivity: if you are negative on the above tests for Celiac Disease but have symptoms when you ingest gluten. Diagnosed by Gastroenterologist.
-Food Allergies:  severe and possibly life threatening IgE food reactions diagnosed by a doctor/allergist who will perform IgE Testing because severe reactions mean you should be carrying an epi pen. In the case of EoE, the patient may be referred to Gastroenterologist for biopsy of the Eosiniphil in the Esophagus.
-Food Sensitivities: IgG blood work, stool samples, saliva samples, etc.; are often done by alternative medical practitioners for low level food sensitivities that are said to cause inflammation in the body. The tests are often not covered by insurance because the tests are not validated or approved by the FDA yet and they don’t in any way determine if you have Celiac Disease or Gluten Sensitivity; you need to see a Gastroenterologist for that.  There is no such thing as a “Gluten Allergy”; you would have Celiac Disease or Gluten Sensitivity or you have and IgE Allergy to wheat, rye and barley!
*To see what those with IgE food Allergies are at risk for and what severe reactions look like, please watch this video: “An Emerging Epidemic: Food Allergies in America”.     http://www.foodallergy.org/emerging-epidemic#.VNkA_C79x_g
So, when you come in to see us for a meal,  we would really appreciate it if you would please use the appropriate terminology. Thanks!

Celiac Disease and Your Kidneys

Over the years I have put a few articles in my newsletter about Kidney Stones, Berger’s Disease (IgA Nephropathy) and Celiac Disease; because I am affected by all three.  Some of our customers are going through the same issues, some have had kidney transplants, some are awaiting transplants and some are just experiencing Kidney Stones.  The following information was originally in a 2012 newsletter and a 2014 Newsletter. I have compiled them both into one article for the blog. As usual, I will use my own situation so you can relate to it. The bottom line here is for you to be aware.

For most of my life I battled bladder infections and surgery and constant kidney stones and kidney infections. If any of you have battled kidney stones and also have Celiac Disease; you will be glad to know that there is a reason why.  I was having stones way before being told I was Celiac and many years later I was told by doctors that there was absolutely no correlation between stones or Celiac Disease. Well, times have really changed.

A few years ago between November and December I was once again battling constant kidney stones. I decided to find a new Nephrologist and he really gave me an education after 3 weeks of constant stones and lab tests. He asked me what I was eating different in November and December of every year (when I always experienced the most stones). I had an ah-ha moment! Every year my mother in law would send us a big box of awesome mixed nuts from Michigan; I would eat some every night when I got home. No doctor ever had asked me what I was eating differently.

There is a strong correlation between Celiac Disease, Kidney Stones and Berger’s Disease. My new doctor even explained it to me in a way that I could actually understand it and he even drew pictures for me!  If you are gluten free and casein free like I am, the lack of calcium can also cause stones, I pass calcium and oxalate stones.  So , if you, your child, or a loved one suffers from stones, this is well worth reading and it is great just to be aware.  I will first discuss Kidney Stones and then I will discuss Berger’s Disease (IgA Nephropathy) as well.

So, for the newsletter, I decided to see if I could find what my Doctor told me in writing somewhere and I found it in several places. Below is an excerpt from one of the best write ups I have seen on kidney stones; by John Libonati at Gluten Free Works.

Kidney Stones
“In active celiac disease, the normal mechanism to get rid of oxalate (calcium binding with oxalate) is prevented by fat malabsorption. If too many fatty acids are present in the intestine, the calcium binds with them instead and is excreted as waste. The oxalate remains to be absorbed into the bloodstream by the colon where it is then excreted into the urine.  This process is called enteric hyperoxaluria. “Enteric” means intestinal. “Hyper” means high. “Oxaluria” means oxalate in the urine.  Calcium present in the urine binds with the oxalate to form crystals.

In enteric hyperoxaluria, the excess free fatty acids, from fat malabsorption, compete with oxalate for calcium binding, leading to an increased availability of oxalate for absorption (solubility theory). This oxalate is absorbed in the colon, which is made more permeable to unabsorbed bile salts and fatty acids (permeability theory).3

Oxalate that should have combined with calcium in the gut to be properly excreted in stool now shows up in the kidneys where it combines with calcium to be excreted in the urine.

Stones form when the amounts of oxalate and calcium are high, the urine is concentrated and the pH (acidity) is low, all of which allow the calcium and oxalate to precipitate out of the urine to remain in the kidney. To illustrate this problem of concentration, think of stirring sugar into a pitcher of lemonade…add too much sugar and it begins to fall to the bottom of the pitcher.

If nothing changes, stones remain in the kidneys to grow and block the passageways of urine excretion.”  80% of kidney stones are formed from calcium oxalate and this is the form most often found in celiac disease. Calcium oxalate is the combination of calcium and oxalate. Calcium is an important mineral that the body needs for structure and function. Oxalate is found in foods in the form of oxalic acid. Oxalic acid is an extremely strong acid found in many plant foods. 

The 8 foods that increase urinary oxalate excretion are:                                    rhubarb, spinach, strawberries, chocolate, wheat bran, nuts, beets, and tea.          (A Celiac should not be eating wheat anyway!)  However, following a low oxalate diet and gluten free diet is not enough for me, I also take medication to help me.

You will be amazed…. click on link for more info:    http://glutenfreeworks.com/blog/2010/11/17/kidney-stones-renal-calculus-causes-treatment-in-celiac-disease/

Berger’s Disease (IgA Nephropathy) and Celiac Disease

Have you been told your creatinine levels are very high in your urine, blood in your urine, high protein in your urine? You should get checked.  I have battled this for the past 5 years or so and I take 2 medications to help me and I follow a low sodium diet.  The Best information I have found is the following from the Mayo Clinic.

IgA nephropathy (nuh-FROP-uh-the) is a common kidney disease that occurs when an antibody called immunoglobulin A (IgA) lodges in your kidneys. This hampers your kidneys’ ability to filter waste, excess water and electrolytes from your blood. Over time, IgA nephropathy – also called Berger’s disease – can lead to blood and protein in your urine, high blood pressure, and swollen hands and feet.

IgA nephropathy usually progresses slowly over many years, and although some people eventually achieve complete remission, others develop end-stage kidney failure. No cure exists for IgA nephropathy, but certain medications can slow its course.  Keeping your blood pressure under control and reducing your cholesterol levels also may help keep IgA nephropathy in check. (My cholesterol is under 125!)

Conditions or factors that may be associated with the development of IgA nephropathy include:

  • Genes. IgA nephropathy is more common in some families and in certain ethnic groups, suggesting a genetic component to the disease.  (My grandfather died of Kidney Failure and he was not a diabetic.)
  • Cirrhosis, a condition in which scar tissue replaces normal tissue within the liver
  • Celiac disease, a digestive condition triggered by eating gluten, a protein found in most grains (I have this.)
  • Dermatitis herpetiformis, an itchy, blistering skin disease that stems from gluten intolerance  (I have this, DH is now recognized as the skin manifestation of Celiac Disease and is a symptom of CD.)
  • Infections, including HIV infection and bacterial infections

Link to the Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/iga-nephropathy/basics/symptoms/con-20034366

As usual, I hope you have found this information useful and as always take control of your health!

Gluten and Neurological Issues

From 2012 Newsletter:
One of my friends suffered from seizures for most of her life. Her mother has Celiac Disease. However, my friend did not display any of the common symptoms; so she was not tested.  She decided to get tested and she found out that she also had Celiac Disease. She went on the Gluten-Free diet, her seizures stopped and she is off all seizure medications.
“The relationship between Celiac Disease and Epilepsy has been documented in medical journals for decades. Unfortunately, it is something our neurologists rarely consider as an underlying possibility in cases of idiopathic epilepsy.  Recent research is also showing that gluten sensitivity can manifest outside of intestinal celiac disease, and present solely as neurological disease in the form of ataxia, peripheral neuropathy, and seizures. This means that ruling out “celiac disease” does not absolutely rule out gluten related neurological disease…….”
-Very interesting information and for actual case information, go to: https://sites.google.com/site/jccglutenfree/seizuresepilepsy
For more up to date information, you may want to look into the book titled Grain Brain; written by Neurologist Dr. David Perlmutter. I will go into more detail about this in a later post where he also addresses gluten sensitivity as well and the effects it can have on the brain.

504 Plans For School Children with Celiac or Food Allergies

Food Allergies and Celiac Disease have been recognized under Section 504 of the Rehabilitation Act and the ADA (Americans with Disabilities Act). Many parents have put these plans in place to safe guard their child at school. I have written several articles over the years about the importance of having a 504 Plan for your Celiac and/or Food Allergic Child in the school. Countless customers have told me  stories about their child ingesting gluten or being exposed to allergens at school.  A 504 plan puts your child’s needs in writing and it has to be followed at school. Often parents tell me that their child’s school tried to discourage this. If you don’t have a 504 Plan in place, the school does not have to do anything to accommodate your child.”

Recently our Baker, Jennifer, got a 504 Plan in place for her Celiac son at his elementary school. This plan should be able to follow him through middle school and high school and it can be altered as needed.

Jennifer says; “Even if you think your school is doing an excellent job in handling your child’s celiac disease it’s still a good idea to have a 504 in place. What if your family has to move? The new school might not be as accommodating. The 504 will move with your child and they will be required to take the necessary precautions. What if your current administration (principals and asst principals) change? The new administration will be required to follow the 504 plan guidelines.”

The American Celiac Disease Alliance has great resources as does FARE (Food Allergy Research and Education). The links below give you samples and guidance.

http://americanceliac.org/for-families/

http://www.foodallergy.org/managing-food-allergies/at-school