“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

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 villi..no 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 up..it 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 anywhere..in 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 away..it 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 on..so 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

 

10 Signs of Thyroid Problems

So many customers come in and ask me about my thyroid and if I have thyroid disease as well as Celiac. Well, it should not be a surprise that Thyroid Problems are often missed by doctors. Often for a Celiac, it is a double whammy…because often the Celiac and Hashimoto’s Thyroiditis go hand in hand and both are often missed…leaving a person miserably ill for a long time! If you are a Celiac and carry gene HLA DQ2, and have a thyroid issue, you most likely have Hashimoto’s Disease (autoimmune disease; under-active thyroid caused by the immune system attacking the thyroid).

Thyroid panels are not part of a normal CBC that are run by doctors.  Often, if a doctor runs a thyroid test, they don’t always run the tests that determine Hashimoto’s Disease; autoimmune thyroid disease.

I know first hand; I had both of the above issues and went un-diagnosed for far too long.  I was complaining of symptoms for about five years but my general practitioner never tested me.  Finally, after experiencing infertility and miscarriages, the reproductive endocrinologist ran the tests and it still took me 8 weeks to get into the specialist he referred me to.  I felt like I was slowly dying; and I was because the thyroid affects your entire system!

One of my favorite on-line docs is Doctor Amy Myers and she is all about the Thyroid.  She recently wrote an article about symptoms, what lab tests must be run and the average normal ranges as well as the need for the doctor to listen to the patient and how they are feeling. Boy did it ring true for me. Below is my story about my diagnosis and how long it took to get my thyroid up and running again and a link to Dr Myer’s article. I hope this is helpful to you or a loved one.

I got lucky, after going un-diagnosed for about 5 years, I was referred to a wonderful endocrinologist in Bethesda, MD, who listened to me after I was diagnosed.  I sat across from him on Christmas Eve 1998 barely functioning and told him that I felt like I was slowly dying. He said that he was stunned that I was even moving; my levels were so bad.  He said, that his instinct was to put me right in the hospital, but the treatment will still be the same, a little thyroid hormone at a time and it would take many months to get me up and level. He gave me the choice, admit me to the hospital or go home. I had my entire family coming in town from New England and did not want to be in the hospital. He told me that I needed to let my family members know that they should be tested for Hashimoto’s Disease and sent me home with the lowest dose of thyroid hormone; .25 for six weeks. (family members got checked and 1 has Hashimoto’s, two have under-active thyroid)

Leaving his office, I forgot to get my parking garage ticket validated and had no money to pay. I hurried back to the doctor’s office, but they were already gone. This was way before you could pay with a credit card. I had to beg the attendant to let me go and promised I would come back with the money.  I made it home; completely exhausted and my father braved the Christmas Eve traffic and went back to Bethesda from Brookeville to pay for my parking. It was only 14 miles but a 40 minute trip each way, on a good day.

It took over a year with testing every six weeks to get my thyroid levels up to normal.  The doctor would say “the numbers looks normal, but how do you feel?” and I said..”I can only stay awake and functioning until 11am”.  He increased the dose, warned me about symptoms of too much thyroid hormone, scheduled me for blood work and follow up in 6 weeks. I went back and he said “everything looks normal..but how are you feeling?”  I said. “the increased dose helped, now I can stay functioning until 1pm”. He said ok, “we will increase it again!” I got the warning again about symptoms of too much thyroid hormone and was on my way.  Again, six weeks later, I was back for my check up and he said, “Your levels look good, how are you feeling?”  I said; “great, now I can stay up until 4pm!”  This went on until I could stay awake and functioning until 11pm.

My final dose was .125. (the generic brand, Levothyroxine, does not contain milk or gluten; had to investigate and figure that out on my own after getting very ill while taking Synthroid). Finally, I could function all day and into the night and finally; my hair stopped falling out, my skin stopped cracking and peeling off me, the swelling in my feet went away and my memory got a lot better! I began to lose the weight that I had put on without any explanation.

I am so glad that my Endocrinologist, Dr. Robert Vigersky, listened to how I was feeling..not just the numbers! Unfortunately for me, he left private practice and went back to Walter Reed.  The patients at Walter Reed are lucky to have Dr Robert Vigersky as the head of the Diabetes Institute. He practices what Dr Amy Myers says; “you have to listen to the patient, not just the numbers”. Please advocate for yourself..and if your doctor does not listen to you, find one who does, I had almost all of the symptoms below.

10 Signs of an Underactive Thyroid:

1. Fatigue after sleeping 8 to 10 hours a night or needing to take a nap daily

2. Weight gain or the inability to lose weight

3. Mood issues such as mood swings, anxiety, or depression

4. Hormone imbalances such as PMS, irregular periods, infertility, and low sex drive

5. Muscle pain, joint pain, carpal tunnel syndrome, or tendonitis

6. Cold hands and feet, feeling cold when others are not, or having a body temperature consistently below 98.5

7. Dry or cracking skin, brittle nails and excessive hair loss

8. Constipation.

9. Mind issues such as brain fog, poor concentration, or poor memory

10. Neck swelling, snoring, or hoarse voice

To learn more about normal levels, tests that need to be run in order to diagnose Thyroid Disorders and Hashimoto’s Disease, Adrenal Glands, etc;  Click Here for More from Dr Amy Myers

Guess Who Came to Dinner?

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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.

 

Thyroid Disorders

A customer was in this week who has been a celiac for most of her life and she is having some other issues.  I asked her if her Thyroid had been checked.  She was not 100% sure.  Many thyroid disorders are missed because the test is not part of the standard CBC that is often ordered.

Disorders are common in those with Celiac Disease and Gluten Sensitivity. There are several different types of thyroid disorders, with autoimmune thyroid disease being the most common; Hashimoto’s Thyroiditis.

A full assessment of your thyroid function includes the following blood tests:

TSH, free T3, free T4, reverse T3 and thyroid antibodies.

*Anyone with Celiac Disease should be tested for Hashimoto’s and anyone with Hashimoto’s should be tested for Celiac Disease.

If I had to make an educated guess based on our customers in the restaurant, about 60% of them have Celiac and Hashimoto’s Thyroiditis.  I also thyroidhave this and take Levoxyl daily  (Synthroid has Milk in it). Click link below for more info and symptoms.

http://www.celiaccentral.org/Celiac-Disease/Related-Conditions/Thyroid-Disease/40/

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)