New Info From the 2017 GF Education Day

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Children's National






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

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

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

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

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

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

Click Here

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


Study: Gluten Sensitivity; “Celiac Lite Disease”, My Genetic Testing & More

Wow! According to an article in Reuter’s Health (July 29, 2016) written by Marilynn Larkin; a new study out of Spain by Dr Fernando Fernandez Banares found that a subset of patients with Non Celiac Gluten Sensitivity (NCGS) may actually have “Celiac Lite Disease”.  A NCGS diagnosis is only given when a person is actively consuming gluten and test negative on Celiac Blood Panel and intestinal biopsy (showing normal damage or atrophy to the villi).  If you have not had these specific tests done and just went off gluten, you don’t know if you are Celiac or not and that is dangerous..especially if you get minimum exposure to gluten via cross contamination!

As I was taking this all in, I thought about so many customers, friends and family members who are in this situation. I wanted to share this study with all of you who tested negative for Celiac and have NCGS, those of you who have not had genetic testing or have not had their skin rash biopsied for Dermatitis Herpeteformis (Celiac disease showing on skin only). I also share the results of my genetic testing for Celiac Disease.

  1. Study findings of Dr Banares: 

“… these patients (the 91%) were characterized by gastrointestinal clinical symptoms within the clinical spectrum of celiac disease, presence of HLA-DQ2/8+, Marsh stage 1 lesion (increased intraepithelial lymphocytes but no villous atrophy), and a clinical and histological response to a gluten-free diet, the question remains as to whether this condition should be considered a ‘minor’ or ‘low-grade’ celiac disease (also called ‘celiac lite’ by some authors) or NCGS.” 

 “Previous studies have shown that the intraepithelial lymphocyte (IEL) count and/or the presence of anti-transglutaminase (TG2) deposits in the mucosa are biomarkers of celiac disease. In the present study, these tissue celiac markers were present in around 55% of patients at inclusion, despite their being on a gluten-free diet, suggesting a ‘celiac lite’ disease.”

Previous studies of celiac disease with (villous) atrophy have shown a permanent increase in IEL, even after a gluten-free diet, (suggesting) that this marker may provide a clue for celiac disease diagnosis and offering the possibility of identifying celiac disease patients when they are on a gluten-free diet, even when histological examination of the biopsy shows recovered mucosa.”

“This ‘proof of concept’ study suggests that there is a ‘minor’ form of celiac disease with negative celiac serology that should be taken into account in the differential diagnosis of NCGS. The presence of increased IEL count and/or TG2 deposits in the mucosa could be of help in the diagnosis of these patients. We are routinely using this diagnostic strategy in our outpatient clinic, and we think that the intraepithelial lymphogram study adds important information to the diagnostic work-up of these patients. Our recommendation is to use it in clinical practice”.  Click Here for Full Article

2. GENES: This stuff is simply amazing and easy to understand! (Who should get genetic testing? See graphic at the end.)

In the study above they looked at those who have genes that predispose them to Celiac. Those genes are HLA-DQ2 and HLA-DQ8; found on Chromosome 6. (However, there are more than 40 genes that contribute to Celiac Disease via different versions of HLA DQ2 and HLA DQ8 genes).  The risk is definitely lower but having a full Celiac genetic blood test ordered by a Gastroenterologist is something worth doing. Cheek swab testing is not capable of testing for this! The full Celiac Genetic Testing is a specific blood test that will look at all of the alleles/versions of DQ2 and DQ8 that you carry which contribute to the development of Celiac Disease. So, which genes are we talking about?

“Susceptibility to CD is linked to certain human leukocyte antigen (HLA) class II alleles, especially in the HLA-DQ region. HLA molecules are postulated to present gluten antigens to T-cells which in turn induce tissue damage.2 Approximately 95% of patients with CD have the HLA-DQ2 heterodimer encoded by the DQA1*05 and DQB1*02 alleles, while close to 5% have the HLA-DQ8 heterodimer encoded by theDQA1*03 and DQB1*0302 alleles.1 Rarely, patients will carry only one of the DQ2 alleles; ie, eitherDQA1*05 or DQB1*02.3 The HLA-DQ alleles are also found in 48% to 65% of first-degree relatives of patients with CD and up to 73% of patients with insulin-dependent diabetes mellitus; thus, these individuals are at increased risk of developing CD.1 Other high-risk groups include those with autoimmune thyroiditis; Down, Turner, or Williams syndrome; selective IgA deficiency; or individuals with symptoms of unexplained iron deficiency anemia or premature-onset osteoporosis.”  Click here for Genetics Info

So, 95% of Celiacs have gene HLA DQ2.  However, there are hundreds of different versions (alleles) of those genes.  Meanwhile; 5% of Celiacs have different versions of those genes that can definitely lead to Celiac Disease; although the chances are smaller.  As usual, I will use myself as an example and share my genetic test results below.

After my brief gluten challenge, I had positive intestinal biopsy (showing villous atrophy) and negative blood test for Celiac. I also have Hashimoto’s Disease  (Autoimmune Thyroiditis that is most often found in those with HLA DQ2). I also had many severe vitamin deficiencies and other autoimmune diseases (many autoimmune diseases run in my family).

I was really curious about my own genetic makeup. Last month my gastroenterologist ordered the full Celiac Genetic Blood work. (Cheek swabs don’t do this type of work can only be done via blood work). My long time doctor thought that I would definitely have both DQ2 and 8 based on my medical history. He was very shocked at the results when he called me!

In my case, I did not have the straight up HLA DQ2 or DQ8 genes, but I had other alleles (versions) of those genes that can lead to the development of Celiac Disease. When combined they can form the “perfect storm” scenario. Given the results of the genetic testing; I was confused, was I still a Celiac? The chances were smaller (it was 1 in 2,000) but it is likely, based on genetic testing and the versions of the genes that I carry. Along with a biopsy showing villous atrophy, clean biopsy two years later and autoimmune thyroiditis (seen in those with HLA DQ2) and other health issues that I have. Basically, a “perfect storm” has to form and I most likely formed it. My doctor and I will go over results in more detail when I see him next.  You might ask, does it mean that I can go out and eat gluten…..absolutely not, I am still considered a Celiac!  (My doctor thought I would carry both genes straight up but the full genetic work up made sense) See graphic below of those who should have HLA Genetic Testing Done.

3. DH: Your Celiac Diagnosis is hiding in a skin rash; often misdiagnosed as Eczema.

Often a person with DH (Dermatitis Herpeteformis) will test negative on blood tests and intestinal biopsy  and nobody is looking at their skin rash!  So many Celiacs get missed this way.  Those who are tested have a skin biopsy that tests positive for the disease. If you have the skin manifestation of Celiac Disease (DH); which I had, the rash can be biopsied and tested for Celiac Disease.  15-25% of those with Celiac Disease also have the DH rash.

DH can show up the mouth, nose, scalp, arms, legs, face, abdomen, ankles, genitals, etc. I had a raging case of DH and the worst was on my scalp. I was sent to the top dermatolagist at NIH back in the early to mid 80’s and he could never figure it out.  I took steroids, I applied steroid creams and nothing worked. He never took a biopsy of the rash and never considered food (gluten) being a cause.

Finally, when my gastroenterologist said the words “Celiac Sprue” and I went off of gluten..the rash went took about 8 months for it to clear up. If I have an accidental glutening, it returns and takes 8 months to fully clear up.  If I get glutened again I get 8 more months of this rash. It keeps piling if someone keeps getting gluten in their system, the rash does not go away. For me, the severity of my DH depends on how much gluten I accidentally ingested.   Currently they don’t know why some Celiacs only damage on their skin and not in their intestines and more research is needed in this area.  See a gastroenterologist well versed in Celiac Disease first and they will refer you to someone who can do the biopsy correctly (it is very specific and must be done by someone who has done it before and knows what they are doing)! Click here for info on DH

Clearly, this shows that there is so much they still don’t know about Celiac Disease and Gluten Sensitivity.  Please support those who are actively working towards solving the puzzle such as the Center for Celiac Research at Mass General! Click Here for Center for Celiac Research

HLA Testing graphic


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


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.











After Celiac: Vitamin Deficiencies, Symptoms, Testing

I am shocked by the number of customers who tell me that they were diagnosed with Celiac Disease, were told to “just eat gluten free” and then sent on their way.  No follow up appointments made and no other tests done. In this post, I tell you what tests should be done, which vitamin & nutritional deficiencies are common and the symptoms of those deficiencies.

Other testing is imperative, especially if you have gone a long time with undiagnosed Celiac Disease. If your regular physician diagnoses you, I highly recommend seeing a Gastroenterologist and a Dietitian who are well versed in Celiac Disease. Why? Because Celiac Disease can cause Anemia, Thyroid Issues, Severe Vitamin Deficiencies, etc. Follow up is also imperative to make sure that your small intestine is healing and that you are truly eating a gluten-free diet.

With all of the places out there offering a “GF Menu”, but not willing to  guarantee it is truly GF, there is a lot of cross contamination going on. I hear this from so many customers who come in and say they eat at “any place that has a GF Menu“. Then they are feeling sick and go back to their doctor and get follow up antibody tests done and their levels are still high;  their Celiac cannot go into remission because they are still ingesting gluten in small amounts. Needless to say, we see them a lot more when they are trying to get their levels down.

In 2011 I wrote extensively about this and sent it out once a year in my newsletter. In 2015, I transferred it to my blog so you can see it anytime. For more detailed information check out my blog post  under “Vitamin Deficiencies”.  I also tell you what the symptoms of the deficiencies are. (click on the blue link below and it will take you right to the article and scroll down to see the list of the 26!)

26 Nutritional and Vitamin Deficiencies in Celiac Disease & Symptoms

In a nut shell, here are just a few of the tests that should be done when diagnosed:

-Celiac Antibodies: IgA, tTg

-Anemia: Hemoglobin, B-12, Folate, etc. (I had Anemia)

-Vitamins & Minerals: B-6, Vitamin D (I had severe deficiencies)

-Mineral Profile

-Renal and Electrolyte Profile (I have Kidney Disease)

-Thyroid: TSH (thyroid stimulating hormone) (I have Hashimoto’s Disease)

-Lipid Profile

-A1C (Diabetes; I put this one on the list; I have pre-diabetes)

Just so you know,  I am not the only one talking about this.. Beyond Celiac; formerly NFCA (National Foundation for Celiac Awareness) put some basic information up as well. It tells you what tests should be run and what your follow up testing for life should be. However, it is nowhere near as involved as what I give you in my previous blog post.

Please be diligent with your health!

Follow Up Testing (Beyond Celiac)


Nutritional and Vitamin Deficiencies and Celiac Disease

26 Nutritional Deficiencies and Those Symptoms in Celiac Disease

I wrote this article in 2011 and republish it each year in my newsletter. I decided to put this on my blog, so folks can access it anytime because customers are constantly asking me to forward this article to them.

I am shocked at the number of customers who come into the Cafe with Celiac Disease who tell me that they have never been tested for any vitamin deficiencies. Every day I see customers in the Cafe who are complaining of many of the symptoms that I had; which were primarily caused by my vitamin deficiencies.

I never would have attributed my symptoms to vitamin deficiencies because so many of us don’t know the symptoms of the deficiencies.  I think there are two reasons for that; in America, food is so plentiful that we, nor our doctors, look at vitamin deficiencies as a cause of our health problems and because some may not know the symptoms of the deficiencies that often go hand in hand with Celiac Disease (CD).   When I started doing my own in depth research on CD, I was able to figure out what my deficiencies were before I had the lab tests done.  Those tests would never have occurred had I not taken it upon myself to learn the symptoms of these deficiencies and insist on the lab work.  Once I got my vitamin deficiencies cleared up, many of my symptoms were gone too.

It is amazing what a person can do when they are sick and tired of being sick and tired and don’t want to hear one more doctor offer them an Rx for an antidepressant. I have been there and done that, all my symptoms still remained, I just did not care how sick I was when on the anti depressants, my step kids could have set the house on fire and I would not have cared or even flinched; I probably would have found something “pretty” about the flames as they were engulfing the house!

I am not a doctor, but with all of the attention on Celiac Disease, one would think that the vitamin deficiencies often caused by untreated CD would be in the forefront, but it is not.  The two biggest problems I hear customers in the café complaining about after a Celiac Diagnosis is they are having cross reactions to other foods and they complain of symptoms that appear to be complications from vitamin deficiencies.  The majority of customers say they are just told by their doctor to eat Gluten Free and that is about it.  No vitamin testing and no thought or discussion by some of their doctors is given to major cross reactive foods or vitamin deficiencies that often accompany a Celiac Diagnosis; they are being overlooked.  Many customers have not had any follow up or a meeting with a dietitian or nutritionist, and that is shocking. In the past 3 weeks I have met more than a few customers with heart failure and celiac disease and one on the transplant list with a machine keeping him alive and he is probably still in his 30’s. Some with kidney failure and celiac are on the transplant list or had their transplant already.  Which came first the Celiac or the Heart or Kidney Failure?  I am betting it would be the Celiac, but it was missed.  Heart and kidney failure is hard to miss.  Severe vitamin deficiencies and untreated Celiac Disease can cause so many other serious problems! Please be aware and learn as much as you can about your Celiac Disease.

If you have not been in yet, we are a café where everyone talks with everyone in the dining room and many times it is like a mini support group breaks out.   Customers are seeking info and support from each other because many are not getting what they need from their doctors.  The conversations are amazing and I really wish I had One Dish Cuisine Cameras, so I could show doctors what their patients come in asking others about!  It is great to see it when a customer comes back in and tells the other customers,” I went off dairy and my diarrhea went away in less than a week”  or  “my rash cleared up in a month when I went of gluten and dairy, the steroid cream did not do anything”.  So, once again, here is some pertinent information and it is up to you to decide what to do with it.  It seems that customers want to treat the actual problem; not just the symptoms of the problem with a drug; they want to know what the underlying problem is and fix that.

Please review the following symptoms and deficiencies. If you feel you may be deficient, please ask your doctor to test your vitamin levels.   I am not a doctor and I am not trying to scare you; as usual, I am trying to keep you informed.  Unfortunately; I don’t know of any other place where you will find this information unless you purchase the book I reference at the end of this article. This book is also available in the library at One Dish Cuisine Café, Deli and Bakery; if you would like to look at it when you are in.

Here is just one example from my many vitamin deficiencies.  My vitamin D levels  test results were a 2 and a 7, with 35 being the minimum level they want you at. You can bet that I had all of the symptoms of a Vitamin D Deficiency and now I take a mega Rx dose of Vitamin D that is prescribed by my doctor.

Check this out, all of it, I bet you will have an “ah ha” moment or two!   Maureen

         There are 26 Nutritional Deficiencies found in Celiac Disease

-Macronutrients and Micronutrients
-Fats, Acids, Minerals and Vitamins

Carbohydrates (Glucose)-   Affects Blood, Nervous, Sensory, Skeletal and Urinary Systems, common in untreated Celiac Disease

– Neurologic Symptoms involving hypoglycemia with irritability, difficulty concentrating, dizziness, restlessness, headache, visual disturbances, faintness, nervousness, hunger, fatigue and in some people, violent behavior. Metabolic symptoms include weakness and failure to gain weight in a child. Caused by damaged villi and limited absorption.

– Fats (Essential  Fatty Acids)

Omega- 3

Alpa-Linolenic Acid (ALA)-Affects Blood, Cardiovascular, Immune, Integumentary, Nervous, Reproductive and Sensory systems.

-Symptoms include Hypertension, artherosclerosis, elevated triglycerides, inflammation, short bleeding time, impaired vision, dry eye syndrome, peripheral neuropathy, mental and behavioral disorders, apathy, excessive thirst, split fingernails and ear problems. Caused by malabsorption in CD and lack of necessary vitamin and mineral cofactors including zinc, magnesium, manganese and vitamins B3, B6 and C.

Docosahexaeonoic Acid (DHA)-Affects Blood, Cardiovascular, Immune, Interumentary, Nervous, Reproductive and Sensory systems.

-Symptoms include slow and or faulty thinking, inability to concentrate, apathy, brain atrophy, essential hypertension, atherosclerosis, elevated blood triglycerides, hypertension and bleeding problems. Results from malabsorption in CD and lack of vitamin and mineral cofactors (zinc, magnesium, manganese and vitamins B3, B6 and C.

Eicosapentaeonic Acid (EPA)- Affects Blood, Cardiovascular, Immune, Integumentary, Nervous, Reproductive and Sensory systems.

–  Symptoms include hypertension, artherosclerosis, elevated triglycerides, depression, apathy, bipolar disorder, the schizophrenia spectrum disorders, ADHD, Dislexia, dyspraxia, the autistic spectrum disorders, dry eye syndrome, eczema, psoriasis, dry skin, PMS, short bleeding time, excessive thirst, sleep disorders. Results from malabsorption in CD, lack of necessary vitamin and mineral cofactors including zinc, magnesium, manganese and Vitamins B3, B6 and C.


Linoleic Acid (LA)- Affects Blood, Cardiovascular, Digestive, Immune, Integumentary, Nervous, Reproductive and Sensory Systems.

-Symptoms include poor inflammatory response to injury, prolonged bleeding time, low blood pressure, skin disorders, fatty liver, excessive thirst, apathy, infertility and in children, growth retardation and short stature. Results form malabsorption in CD and lack of necessary vitamin and mineral cofactors including zinc, magnesium, manganese and vitamins B3, B6 and C.

Arachidonic Acid (AA)-Affects Blood, Cardiovascular, Immune, Integumentary, Nervous, Reproductive and Sensory Systems.

– Symptoms include fault memory thinking, and learning, apathy, low blood pressure, poor inflammatory response, prolonged bleeding, excessive thirst, low birth weight, reduced head circumference in infants. In children, growth retardation and short stature may develop. Resulting from malabsorption in CD and lack of necessary vitamin and mineral cofactors including zinc, magnesium, manganese and vitamins B3, B6 and C.

-Proteins (Essential Amino Acids)-Affects all systems.

Arginine, Cysteine, Histidine, Isoleucine, Leucine, Methionine, Phenylalanine,    Proline, Tryptophan and   Valine.

Marked by fluid retention and malnutrition includingmuscle wasting, weakness, proor muscle tone, fatigue, loss of vitality, anxiety, insomnia, dermatitis, hunger, weight loss, wasting of subcutaneous fat and muscle, flaky skin, thinning hair, discoloration of hair (black or brown turns reddish), apathy, diminished intellect, susceptibility to infection, infertility and impaired growth in children.  Results from protein maldigestion and malabsorption in CD, including B complex vitamins.



Calcium- Affects Blood, Cardiovascular, Digestive, Immune, Integumentary, Glandular, Nervous, Reproductive and Sensory Systems.

-Symptoms include poor development of bones and teeth, rickets in children, osteomalacia in adults, osteoporosis, bone pain, easy fractures; muscle spasms/cramps advancing to tetany, mild encephalopathy; hypertension, anxiety, irritability, insomnia, excessive bleeding, pre-eclampsia in pregnancy, changes in saliva composition.  Cataracts in chronic deficiency.  Seizures and laryngospasm when severe.    Caused by malabsorption in CD, ionized calcium being rendered unabsorbable due to binding with unabsorbed fatty acids in the formation of soaps, inadequate absorptive surface area, reduction in Vitamin D regulated proteins needed for active transport and low blood albumin.

Copper- Affects Blood, Cardiovascular, Glandular,  Muscular, Nervous,  Skeletal Systems.

-Symptoms include anemia, leucopenia, neutropenia and bone abnormalities especially demineralization and apathy. Later symptoms are subperiosteal bleeding loss of pigmentation of hair and skin, hair curliness and loose skin. Caused by malabsorption in CD and possibly increased biliary loss.

Iron- Affects Blood, Cardiovascular, Digestive, Glandular, Immune, Integumentary, Muscular, Nervous, Reproductive, Sensory and Skeletal Systems.

Symptoms include pallor, fatigue, susceptibility to bacterial infection, reduced learning, inattention, apathy, sensorimotor incompetence, visual impairment, reduced memory, anxiety, anorexia, dysphagia, a pale, smooth and sore tongue, koilonychia, loss of vitality, infertility and defects in fetal development. Caused by malabsorption of iron in CD; deficiency in Vitamin C impairs absorption.

Magnesium- Affects Cardiovascular, Digestive, Glandular, Muscular, Nervous and Skeletal Systems.

Symptoms include anorexia, nausea, vomiting, hypertension, muscle pain/spasm, chronic fatigue, weakness, PMS, constipation, bone pain, headache, deptession, irritability, personality change, confusion, anxiety, insomnia and decrease parathyroid hormone. Contributes to osteoporosis.  Serious neuromuscular disturbances may develop including tetany, cardiac dysrhythmias, myocardial ischemia and seizures. Caused by malabsorption in CD being rendered unabsorbable due to binding with unabsorbed fatty acids in the formation of soaps an shift in electrolyte balance from loss of potassium in diarrhea.

Phosphorus-  Affects Body Composition, Cardiovascular, Digestive, Glandular, Muscular, Nervous, Reproductive and Skeletal Systems.

Symptoms include loss of appetite, muscle weakness weight loss, low milk production in lactating women.  Clumsy speech (dysrathia), paresthesia, confusion advances to stupor, seizures and coma.  Contributes to osteoporosis.  In children; imperfect bone and teeth development, rickets and retarded growth occur. Osteomalacia develops in adults.  Results from phosphate malabsorption  in CD, deficiency of OH, D3 which increases absorption of  phosphorus, depletion in vomiting and diarrhea and increased parathyroid hormone which increases renal excretion.

Potassium- Affects Blood, Body Composition, Cardiovascular, Digestive, Muscular, Nervous, Pulmonary and Skeletal systems.

Marked by fatigue, low blood pressure, dizziness, loss of appetite, thirst, vomiting, tremor, muscle aches/spasm, weakness of the lower extremities, drowsiness, confusion, anxiety, personality changes, mental depression and bone pain. Contributes to osteoporosis.  Sever symptoms include premature ventricular and atrial contractions of the heart, tetany, myoclonic jerks and convulsions.  Results from depletion in diarrhea and vomiting in CD.

Selenium- Affects Cardiovascular, Glandular, Immune, Muscular and Skeletal systems.

Marked by muscle weakness, loss of vitality, hypertension, cardiomyopathy, thyroid disorders, testosterone deficiency, lowers resistance to infection and predisposition to cancer.  Contributes to osteoporosis.  Results from malabsorption in CD.

Zinc-  Affects Blood, Body Composition, Cardiovascular, Digestive, Glandular, Immune, Integumentary, Muscular, Nervous, Reproductive, Sensory and Skeletal systems.

Marked by low energy, fatigue, slow wound healing, frequent infections, nervousness, depression, anorexia, impaired taste and smell, skin rashes and disorders including eczema, acne, psoriasis, photophobia, male infertility and white spots in fingernails.  In children and youths, anemia, hypogonadism and short stature develop.  Results from malabsorption in CD.


Water Soluble

Thiamin (B1)- Body composition, Cardiovascular, Digestive, Muscular, Nervous, Reproductive and Sensory systems.

Marked by anorexia, weight loss, poor concentration/memory, difficulty recalling information, low morale, irritability, anxiety, sleep disturbances, apathy, mental confusion, weakness, fatigue, indigestion, abdominal discomfort, constipation, pain over heart, ophthalmoplegia and decreased urine output.

Late syndromes include:   “dry” causes changes in both legs, loss of feeling in toes, burning of the feet, muscle cramps in the calves and tenderness, pain in the legs. Later, loss of knee jerk reflex, tense calf muscles and atrophy of calf and thigh muscles occur.

Beriberi “wet” causes heart muscle disease: vasodilation and warm extremities, tachycardia (fast pulse), and sweating.  Cardiomegaly leads to heart failure with edema of face, legs, trunk and serous cavities with lung congestion, high blood pressure, distended neck veins, fatigue and inactivity.

Cerebral beriberi (Wernicke Kosakoff syndrome) results from acute deficiency on top of chronic deficiency: confusion, dementia, loss of speech sounds from larynx, and confabulation, then loss of immediate memory, disorientation, nystagmus, staggering walk, coma and death.

Results from Malabsorption in CD.

Riboflavin (B2) –  Affects Blood, digestive, Integumentary, Muscular and Sensory Systems.

Marked by loss of visual acuity, tearing, running and itching of eyes, photophobia, inflammation of conjunctiva, oral soreness and burning of lips mouth and tongue, cheilosis, purplish swollen tongue, hypertopghy or atrophy of tongue papillae, normocytic and normochromic anemia and seborrhea dermatitis. Predisposes to cataracts.  Results from malabsorption in CD.

Niacin (B3 ) –  Affects Body Composition, Cardiovascular, Digestive, Immune, Integumentary, Muscular, Nervous, Reproductive, Sensory and Urinary systems.

Marked by muscle weakness, anorexia, distorted taste, indigestion, scarlet swollen tongue with burning of the mouth, throat and esophagus, abdominal discomfort and distention follow by nauseas, vomiting and diarrhea-serious and may be bloody from ulceration. Nervous symptoms include dizziness, poor memory, anxiety, apathy, depression, disorientation, confabulation, neuritis, tremors and hyperactivity in children. Skin can be cracked, itchy, pigmented red rash advancing to crustin skin eruptions sensitive to sunshine, itchy re wet areas from chafing and inflammation of mucous membranes of vagina and urethra.  Results from malabsorption in CD.

Pyridoxine (B6) – Blood, Cardiovascular, digestive, Immune, Integumentary, Muscular, Nervous, Reproductive systems.

Marked by anemia, increased homocysteine leading to atherosclerosis, lymphopenia, seborrhea, dermatosis, glossitis, stomatitis, cheilosis, peripheral neuropathies, weakness, sleeplessness, irritability, depression, apathy and impaired cell mediated immunity.  Convulsions in infancy.   Results from malabsorption in CD.

Folic Acid (B9) – Blood, Body Composition, Cardiovascular, Digestive, Glandular, Immune, Integumentary, Muscular, Nervous, Reproductive, Sensory.

Marked by megoplastic anemia, thrombocytopenia leading to bleeding, neutropenia leading to risk of infection, hyperhomcysteinemia leading to a atherosclerosis, glossitis, stomatitis, diarrhea, malabsorption, weakness, depression, apathy, psychiatric disorders, polyneuropathy, and neurologiacal abnormalities including seizures, migraine, and intracranial hypertension.  In men, impotence, hypogonadism and reduced semen quality may develop. In women, infertility, toxemia or pregnancy, miscarriage, abruption placenta, restless leg syndrome and congenital malformations can result. Results form malabsorption in CD.

Vitamin B12- Blood, Body Composition, Cardiovascular, Digestive, Integumentary, Muscular, Nervous, Sensory.

Marked by increase in plasma and urinary levels of homcysteine (leading to atherosclerosis), methylmalonicacid and aminoisocaproate, megaloblastic anemia giving a lemon yellow tint to the skin, pallor, thrombocytopenia in half of severe cases leading to risk of bleeding, neutropenia leading to risk of infection, apathy, anorexia, distorted taste, beefy red, smooth tongue with burning intermittent diarrhea and constipation, poorly localized abdominal pain, considerable weight loss, muscle stiffness and generalized weakness in legs, numbness, tingling and burning in feet. Spasticity and ataxia, depression and impaired thinking occur later.  Late signs include paranoia, hallucinations, confusion and delirium. Results from malabsorption in CD and is not due to autoimmune gastritis.

Vitamin C-  Blood, Body Composition, Cardiovascular, Digestive, Glandular, Immune,  Integumentary, Muscular, Nervous, Pulmonary, Reproductive, Sensory and Skeletal.

Marked by swollen ulcerated and bleeding gums and eventual tooth loss from infection, impaired wound healing, bleeding including bruising, petechiae, nosebleeds, conjunctival hemorrhage and splinter hemorrhages in nails, loss of muscle, weakness, fatigue, anemia, rheumatic pains in legs, arthritis resembling rheumatoid arthritis, lethargy, irritability, depression, hysteria, hypochondria and coiling of hair in skin with hyperkeratosis of follicles (bumps).  Edema of lower extremities appears late.  In infants, weakness of bone, teeth, cartilage and connective tissue, edema and hemorrhages occur due to gluten in formula.  Results form malabsorption in CD.

Fat Soluble

Vitamin A- Blood, digestive, Immune, Interumentary, Pulmonary, Reproductive, Sensory, Skeletal, Urinary.

Marked by repeat infections and poor recovery.  Visual Problems include nightblindness, impaired dark visual adaptation, dryness of the bulbar conjunctiva, chronic conjunctivitis, dryness of the cornea with haziness, cataracts, dysfunction of the retina, Bitot’s spots, xerophthalmia and blindness.  Dermatologic problems include dry, scaly, rough skin and plugged hair follicles- “goose flesh”.  Mucous problems include dry mouth, poor digestion and diminished mucous production in the digestive tract, lungs and urinary tract. Impairment of sperm formation in males and spontaneous abortion in females occurs.

Vitamin D- Affects Digestive, Glandular, Immune, Integumentary, Muscular, Nervous and Skeletal.

Marked by bone pain, easy fractures, osteopenia/osteoporosis, (bone thinning), osteomalacia (bone softening) in adults, affecting the spine with vertical shortening of the vertebrae, the pelvis with flattening and narrowing of the pelvic outlet and the lower extremities with bowing of the long bones; muscle weakness, defective coordination or walking, osteomalacic myopathy and spasm, psoriasis, decreased male fertility.  Results from malabsorption in CD.

Vitamin E- Affects Cardiovascular, Muscular, Nervous, Reproductive and Sensory systems.

Marked by loss of deep tendon reflexes, impaired vibratory and sensory sensations, changes in balance and coordination, weakness, retinopathy, abnormal clots, increased risk of cancer and arthersoclerosis.  Infertility occurs in males. Dysmenorrhea and reproductive disorders occur in females.  Results from malabsorption in CD and pancreatic insufficiency.

Vitamin K- Affects Blood, Reproductive and Skeletal systems.

Marked by abnormal bleeding, including easy bruising, nosebleeds, bleeding gums, gastrointestinal bleeding, excessive menstrual bleeding and blood in the urine.  Contributes to osteoporosis. Results from malabsorption in CD, diarrhea.

(Source: Recognizing Celiac Disease by Cleo J. Libonati, RN, BSN)

*Check out our Resources Page on our website for links to the above and the 300 signs and symptoms of Celiac Disease.