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.

 

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)

 

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!