Neurological/Pshyciatric Manifestations of Celiac/Gluten Sensitivity

What do Depression, Mood Disorders, ADHD, Gluten Ataxia, Autism, Neurological Issues, Migraine Headaches, Epilepsy, Seizures, White Matter on Brain and Schizophrenia; have in common? According to NIH (National Institute of Health), all of the above are also symptoms of Celiac Disease and Gluten Sensitivity which can affect adults and children!

I get asked about this so often by customers, at least once or twice a week, that I thought I would write about this in depth. Some are having multiple neurological complications from their Celiac or Gluten Sensitivity or their child is exhibiting ADHD Symptoms and stomach aches but has not been tested for Celiac Disease. (I am Celiac and also have Ataxia (Neurological symptoms; loss of balance & coordination, fumbled speech and I exhibit signs of ADHD-can’t concentrate when exposed to gluten). The shocking thing is that many in the medical community are not investigating the gluten connection by testing for Celiac Disease first! Often a child or adult are just put on ADHD medications or anti depressants and just sent on their way. Often the medicines are just addressing some of the symptoms; not the actual cause! The result is ongoing pain and suffering because the true condition is NEVER addressed. The good news is that NIH (National Institute of Health) has put solid information out there for our physicians and us to see!

First we need to understand the difference between Celiac Disease and Gluten Sensitivity. Then we will learn that psychological and neurological issues can be preset in either condition. NIH has some great information about this and will clear up any question that you or your medical provider have about the validity of these symptoms. Finally, I give you a link to these neurological and psychological symptoms; which are sometimes the only symptoms that an adult or child actually presents with. (Yes, many don’t even have any gastrointestinal symptoms or stomach aches!)

First, read this, all of it. Second, if any of this applies to you or you child, get yourself or your child tested for Celiac Disease (while still eating gluten) by a gastroenterologist who is well versed in Celiac Disease.

Celiac Disease (CD) affects about 1% of the population (about 1 in 130) and gluten sensitivity affects about 6% of the population. Even with all of the knowledge that we have now, it is believed that as many as 85% of cases of CD go undiagnosed. CD is dependent on an autoimmune reaction to gluten (the protein found in wheat, rye and barley) and is usually characterized by intestinal symptoms. Those with gluten sensitivity (GS) don’t have intestinal damage (villous atrophy) or antibodies for CD but can test positive for antibodies to gliadin. Those with CD and GS can present with many neurological and psychiatric symptoms. However, gluten sensitivity remains under-treated and under-recognized as a contributing factor to psychiatric and neurological manifestations.

In CD, the classic symptoms typically include abdominal bloating, steatorrhea (excretion of abnormal quantities of fat due to malabsorption) and weight loss. Some just present with a rash that looks like eczema, but is really the skin manifestation of Celiac Disease known as Dermatitis Herpeterormis (DH). However, there are too many symptoms to list here; so a link will follow. Diagnosis is confirmed by testing for a number of different antibodies including anti-endomysial antibodies (EMA), anti-tissue transglutaminase antibodies (tTG), and anti-gliadin antibodies (AGA).  We understand what causes the intestinal damage and the genetics related to CD.  Those genes are HLA-DQ2 or HLA-DQ8 and their other versions.

There are more than 300 signs and symptoms of CD. Click Here for List. This list is great because it describes symptoms as they affect different body systems and there is also a list of how children may present with Celiac Disease (that list is at the bottom of the link). Not everyone presents with the same symptoms..some just have bloating and constipation and stomach aches. Some just are fatigued, irritable and are moody or present with Autism or ADHD like symptoms. The intestinal biopsy used to be the gold standard.  Now there are 5 criteria for a Celiac diagnosis. Those with GS often have the same symptoms as those with CD.

Five Criteria for Diagnosing Celiac Disease and someone only has to have 4 of the 5!

  1. The presence of signs and symptoms compatible with celiac disease.
  2. Positive serology screening (high serum levels of anti-TTG and/or EMA).
  3. Presence of the predisposing genes HLA-DQ2 and/or –DQ8.
  4. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease.
  5. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.

Click Here for More     Click Here for 4 of 5 Rule

People with GS would not fit into less than 4 of the 5 categories. GS is a diagnosis of exclusion; this diagnosis is given once CD and wheat, rye or barley allergies are ruled out. This means all of the above testing was done while the patient is still consuming gluten and did not meet 4 of the 5 criteria for CD. Then the patient is put on a Gluten-Free diet.  If symptoms resolve; you are given a diagnosis of gluten sensitivity!  (There is some evidence that GS is just an early form of CD.)

Neurological/Psychiatric complications of CD have been known to the medical community for over 40 years. Meanwhile, GS sensitive patients also have many neurological and psychiatric complications. However, based on the lack of intestinal involvement, the neurological and psychiatric complications may be the prime presentation in patients suffering from GS! Therefore gluten sensitivity may easily go unrecognized and untreated.

Studies have shown that about 22% of  patients with CD develop neurological or psychiatric dysfunction and as many as 57% of people with neurological dysfunction of unknown origin test positive for anti-gliadin antibodies. Neurological and psychiatric complications observed with gluten-mediated immune responses include a variety of disorders.

From 1953 to 2011 a PubMed literature search located 162 original articles associating psychiatric and neurologic complications to celiac disease or gluten sensitivity!  36 articles for seizure disorders, 20 for ataxia and cerebellar degeneration, 26 for neuropathy, 20 for schizophrenia, 14 for depression, 12 for migraine. There were up to 10 articles each for anxiety disorders, attention deficit and hyperactivity disorder (ADHD), autism, multiple sclerosis, myasthenia gravis, myopathy, and white matter lesions.

However, the  vast majority of research to date has not looked at CD and GS independently, so the true prevalence of the neurological/psychiatric complications with each is hard to pin down. It does call attention to the fact that GS and CD are different gluten-mediated immune responses that may be the cause of patients presenting with a host of psychiatric and neurological complications.

For more information on the symptoms listed at the top of the article (NIH) please use this link. It goes into detail about each neurological and psychological manifestation, just click on link and scroll down, good stuff in here..! Click Here for NIH Info

 

 

Vitamin D: “You Are What You Absorb!”

“You are what you absorb!” If you are eating foods rich in Vitamin D and are not absorbing it, you are only as good as what you are able to absorb! (Think Celiac, think Leaky Gut or Gluten Intolerance/Sensitivity). Vitamin D plays a big role in our immune system, our hearts, bone strength and even cancer.  Do you know your levels? If not, you should ask your doctor to order the blood work the next time you are in for a check up.

I will go over why we have Vitamin D Deficiencies, Symptoms of Deficiencies, How Much Vit D is enough and How Much is Too Much; or toxic. (Recently, my doctor had to reduce my Rx of Vit D) You will see that it really depends on who is looking at your levels! I use myself as an example and also went to several different sources for this blog post and I think you will find the information very interesting.

First, I will be giving you information that I get from Amy Myers, MD.  This is the most thorough information I have seen on Vitamin D and it is easy to read and understand, even if you don’t have the letters “MD” after your name.  Everyone should get their levels checked because 36% of healthy adolescents and 57% of adults in the US have a deficiency. According to Dr Myers, they believe those numbers may be even higher because the previous recommended levels of vitamin D were too low!

Dr Myers says; “The widespread deficiency of Vitamin D is concerning because it plays an important role in many areas of our health. It contributes to bone strength, heart health, and cancer prevention. And, it plays a hugely important role in your immune system and can be a determining factor in whether or not you develop an autoimmune disease.”

There are 3 reasons this occurs:

  1. We don’t get enough sun exposure, we do we put sunscreen on & reduce it by 90%

2. Our diets lack vitamin D (salmon, fish liver oil, organ meats, beef liver, egg yolk)

3. Fat Malabsorption

The two foods most fortified with Vitamin D are breakfast cereals and milk.  Mmmmm, I am screwed because cereals contain gluten and milk is; well, it is milk and I can’t have that!

Fat Malabsorption: One thing that surprised me is that she talked about fat malabsorption. Vitamin D is fat soluable. So, that means that your gut will have to absorb fat in order to absorb Vitamin D. (Could this be why my cholesterol is low; usually between 118-127?)

Vitamin D also needs Vitamin K because it works in tandem with Vitamin D and makes sure the Vitamin D ends up in our bones and not in our arteries.  She also says to make sure we have Vitamin E and Vitamin A because they work with Vitamin D as well.

I know I have fat malabsorption. This, has always been a problem for me and it also contributed to a lot of clogged toilets prior to my celiac diagnosis. If I eat anything fatty, I see it in the toilet, it looks like a bunch of oily and undigested fat. (I ate some wings on the Sunday of Memorial Weekend and it is a good thing we were at home on Memorial Day!)

Vitamin D is a fat-soluble vitamin, meaning your gut has to be able to absorb dietary fat in order to absorb Vitamin D. The saying goes “you are what you eat,” but in reality, Dr Myers says that “you are what you absorb”.  She goes on to say; “if you have a leaky gut because of inflammatory foods such as gluten, infections, or toxins, your ability to absorb nutrients and vitamins may be severely compromised”.

I had to beg a doctor to check my levels and when they were finally checked, my results were  2 and a 7;  I was given an Rx . I was definitely feeling better, my neuropathy went away and on my last check up, I was at 50 thanks to 50,000 IU Rx supplementation. But I was having some complications that my Endocrinologist was not taking into consideration. (more on this later)

However, Dr Myers suggest we aim for between 60-90 ng/ml. (I address the different recommended levels in a chart below) For more information from Dr Amy Myers on Vitamin D and it’s Impact on your Immune System (Protective Immunity and it’s role in Autoimmune Disease and How to Increase your Vitamin D with Vitamin K) Click Here for info from Dr Amy Myers

Symptoms of Vitamin D Deficiency?

Vit D Deficiency is common in people with untreated Celiac Disease but you don’t have to be a Celiac to have a Vitamin D deficiency; which effects digestive, glandular, immune, integumentary, muscular, nervous and skeletal systems via:

Impaired bone mineralization, muscle weakness, alterations in maintenance of calcium and phosphorous hemeostasis, metabolic functions, male reproduction and is implicated in psoriasis.  Also, Bone Pain, Easy Fractures, osteopenia/osteoporosis, (bone thinning), osteomalacia (bone softening), in adults, affecting the spine with vertical shortening of the vertabrae, the pelvis with flattening and narrowing of the pelvic outlet and the lower extremities with bowing in the long bones, muscle weakness, defective coordination for walking, osteomalacic myopathy and spasm, psoriasis, decreased male fertility.

In young children, development of rickets with bone bending of the weak shaft and delayed walking in 1-4 year olds. In older children walking is painful with development of bow-legs and knock-knees.

*These symptoms are often seen as a result of  malabsorption in Celiac Disease. Celiac related deficiency responds to the gluten free diet and supplementation produces rapid resolution of symptoms.  Source: Recognizing Celiac Disease by Cleo J. Libonati, RN, BSN

HOW MUCH IS ENOUGH VITAMIN D?

There are different recommended levels depending on who is looking at your results as seen in the chart below. My endocrinologist was fine with me at 50 ng/ml; see the chart below. However, my Internist (my new General Practitioner) thinks that is too high. (this will all make sense at the end of this) I did some checking and all sources say something different.  Below is what I found:

Vit D recommended levels

NIH (National Institute of Health) also has some different info: 

 
nmol/L** ng/mL* Health status
<30 <12 Associated with vitamin D deficiency, leading to rickets
in infants and children and osteomalacia in adults
30 to <50 12 to <20 Generally considered inadequate for bone and overall health
in healthy individuals
≥50 ≥20 Generally considered adequate for bone and overall health
in healthy individuals
>125 >50 Emerging evidence links potential adverse effects to such
high levels, particularly >150 nmol/L (>60 ng/mL)

* Serum concentrations of 25(OH)D are reported in both nanomoles
per liter (nmol/L) and nanograms per milliliter (ng/mL).
** 1 nmol/L = 0.4 ng/mL

Reference Intakes

Intake reference values for vitamin D and other nutrients are provided in the Dietary Reference Intakes (DRIs) developed by the Food and Nutrition Board (FNB) at the Institute of Medicine of The National Academies (formerly National Academy of Sciences) [1]. DRI is the general term for a set of reference values used to plan and assess nutrient intakes of healthy people. These values, which vary by age and gender, include:

  • Recommended Dietary Allowance (RDA): average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy people.
  • Adequate Intake (AI): established when evidence is insufficient to develop an RDA and is set at a level assumed to ensure nutritional adequacy.
  • Tolerable Upper Intake Level (UL): maximum daily intake unlikely to cause adverse health effects [1].

The FNB established an RDA for vitamin D representing a daily intake that is sufficient to maintain bone health and normal calcium metabolism in healthy people. RDAs for vitamin D are listed in both International Units (IUs) and micrograms (mcg); the biological activity of 40 IU is equal to 1 mcg (Table 2). Even though sunlight may be a major source of vitamin D for some, the vitamin D RDAs are set on the basis of minimal sun exposure [1].

Table 2: Recommended Dietary Allowances (RDAs) for Vitamin D [1]
Age Male Female Pregnancy Lactation
0–12 months* 400 IU
(10 mcg)
400 IU
(10 mcg)
1–13 years 600 IU
(15 mcg)
600 IU
(15 mcg)
14–18 years 600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
19–50 years 600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
51–70 years 600 IU
(15 mcg)
600 IU
(15 mcg)
>70 years 800 IU
(20 mcg)
800 IU
(20 mcg)

* Adequate Intake (AI) Click Here to go to NIH

Symptoms of Too Much Vitamin D (toxicity):

According to the Mayo Clinic, the main consequence of vitamin D toxicity is “a buildup of calcium in your blood (hypercalcemia), which can cause poor appetite, nausea and vomiting. Weakness, frequent urination and kidney problems also may occur. Although vitamin D toxicity is uncommon even among people who take supplements, you may be at greater risk if you have health problems, such as liver or kidney conditions, or if you take thiazide-type diuretics. As always, talk to your doctor before taking vitamin and mineral supplements.”  Mayo Clinic Too Much D

So, who do you listen to? Well you always listen to your doctor, but again, I think you need to listen to your body (and so does your doctor). On the mega Rx dose of Vitamin D, I was definitely having increased urination, more frequent kidney stones and I also take two thiazide-type diuretics.  So, my GP (internist) looked at my numbers and the other factors adversely  affecting my health and reduced my dosage. We will do blood work in 6 weeks to see what the result is, but I have not had any major stones. (FYI: I recently changed my GP to an Internist who looks at the whole picture and how everything affects my overall health. Not only does she understand Celiac Disease, she and her daughter have Celiac Disease and I believe this is the best decision that I have made for my health!)

I hope you found this information helpful.

 

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Major Surgery for Maureen?

Many of you have seen me zipping around the restaurant with my mini knee scooter over the past week or so.  To save myself from having to tell the story over and over again I thought I would fill you in on the situation and share with you the “below the belt” hit we took while I am down. So, here we go…

Many of you know that my body produces all kinds of stuff; primarily arthritis, bone spurs, gallstones and kidney stones. I had surgery 15 years ago for a bone spur that was impinging on a nerve in my left shoulder. Also, I have a bone spur and arthritis in my right hip. Seven years ago a bone spur started forming on the back of my left heel. It was not super painful and I always wore open-back, clog style, tennis shoes at the cafe, so it really did not bother me too much.  I just did not buy any shoes that had a back to them.  Yes, it would hurt every now and then; but it was not totally disrupting my life.  My motto is, “if it ain’t broke, don’t fix it!”

A few weeks ago; without warning, things changed. The back of my heel, calf and back of my knee were really hurting and I was walking with a pronounced limp for about 4 days.  I struggled through my normal 11 hour Saturday and was in agony. By the time I got home the only way I could move around was by crawling on my hands and knees.  When I awoke Sunday morning, I tried to walk on it and the pain was right up there with my kidney stones, so I knew I had a big problem and immediately went down on my hands and knees to get to the bathroom.

Dave went to open the cafe and my sister took me to urgent care; they took an x-ray, gave me steroids, immobilized me, put me on crutches and gave me an urgent referral to an orthopedist.  Urgent care said: “bone spur, inflamed, degenerating Achilles tendon and calcifying Achilles tendon”. The next day the orthopedist took a few more x-rays and told me what the problem is:

Insertional Achilles Tendinosis with Bone Spur. Basically, the bone spur is wearing away/shredding my Achilles tendon where it attaches to the heel.  It is also calcifying.  Yesterday,  I had an appointment with a top doctor at MedStar Union Memorial who specializes in this issue (and wow, this man understands Celiac Disease too!).  In addition to no vertical movement; he brought it to my attention that I don’t have any strength or lateral movement in the ankle/foot from left to right. (mmm..who knew; I never noticed!) Another contributing factor could be the doses of Cipro I took several times this year for kidney infections  (side effect: it can cause issues with tendons). I am scheduled for an MRI to figure out what is going on.

Basically, the only permanent fix is surgery. Detaching what is left of the tendon, removing the bone spur and then re-attaching by taking a tendon out of my foot/big toe and moving it to the heel. They will know more when the MRI is done. Avoiding surgery is optimal..but not a guarantee.

I spent five days at home on my couch with my leg elevated and went stir crazy. My first day back was Friday of Memorial Weekend (we wanted to be open for all of you). Many of you hear me say that whenever we close over a holiday, someone always has something nasty to say..usually on our answering machine.  This time, it was worse. Of course; someone left a beyond nasty review on Trip Advisor saying we are “Rude” because we closed early on Sunday. They were upset because we would not re-open for them after showing up an hour after we closed; while Dave was mopping the floor. Our staff was long gone and they wanted me to re-open the kitchen and make them a sandwich. You all know that we posted holiday weekend hours in the cafe, on door, on facebook, twitter, website and my blog; weeks prior. They went by a third party’s website info. They also accused us of just being in it for the money.  Come on people, really? We still don’t take a paycheck!  They were upset because they were on their way to DC and drove out of their way (3 miles off of Rt 95), but in the review, they said the drove 8 hours just to come here and their four year old is disappointed. Wow, poor planning on their part. So, instead of taking responsibility for their poor planning, we are deemed “rude” and in it for the money.  Anyway, I just cant win; it takes a lot to rock my world and these people really  hit us below the belt. I am not a big crier, but I cried my eyes out over this one and started wondering why I am even bothering to do this. Either way, I definitely overdid it at work Memorial Weekend.

Going forward, I have to get the inflammation down, but I cannot take any NSAIDs (anti inflammatory drugs), so I am “screwed”.  A compounding pharmacy made me a special NSAID cream that I can massage into the heel and calf, and it will not absorb into my system like taking an oral NSAID, but definitely does not work as well. It needs rest to get swelling down.

I am in a cast/boot (24/7) for another 4 weeks in order to relieve pain and reduce swelling and inflammation.  The good news is that it only hurts if I try to use it or walk on it. So, I have this really cool knee scooter so I can zip around the cafe; complete with a bell and a handy basket on the front handle bars.

So, I will be scooting around for a while longer and will let you all know more after the MRI and if/when I schedule the surgery.  The ultimate goal is to avoid surgery, but I may have to do it. Recovery is long after this type of surgery, no weight bearing, for at least 8 weeks, suture removal in a couple weeks and then a hard cast. Full recovery  can take up to a year.

Either way, I plan to be at the restaurant as much as I can..and you will see me hobbling around or on my scooter for quite a while. Yes; I am ready for all the jokes and teasing that you all will be sending my way!

The Achilles tendon is the largest tendon in our bodies and it connects our calf muscles to our heel bone and is necessary for walking, running and jumping. Don’t mess around or put off seeing a doctor, even if it is not causing severe pain because the worse it gets, the more complicated the fix!

Achilles tendon

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)