Living Green, Gluten Free & Life in General

It speaks for itself…this is why we confuse Doctors

ScienceDaily (Oct. 8, 2009) — People with celiac disease may develop osteoporosis because their immune system attacks their bone tissue, a new study has shown.

It is the first time an autoimmune response – a condition whereby the body can attack itself – has been shown to cause damage to bones directly.

Researchers from the University of Edinburgh studied a protein called osteoprotegerin (OPG) in people with celiac disease – a digestive condition that affects 1 in 100 people.

In healthy people, OPG plays a crucial role in maintaining bone health by controlling the rate at which bone tissue is removed.

The latest research shows that 20 per cent of celiac patients produce antibodies that attack the OPG protein and stop it working properly. This results in rapid bone destruction and severe osteoporosis.

It was previously thought that osteoporosis – a known complication of celiac disease –develops in celiac patients because they cannot properly absorb calcium and vitamin D from their diet. Both nutrients are essential for healthy bone development.

The team found that although this new form of osteoporosis did not respond to calcium and vitamin D supplements, it can be easily treated with drugs that prevent bone loss.

The research is published in the New England Journal of Medicine.

Professor Stuart Ralston, of the Institute of Genetics and Molecular Medicine at the University of Edinburgh, who led the team, said: “This is a very exciting step forward. Not only have we discovered a new reason to explain why osteoporosis occurs in celiac disease, but we have also found that it responds very well to drugs that prevent bone tissue removal. Testing for these antibodies could make a real and important difference to the lives of people with celiac disease by alerting us to the risk of osteoporosis and helping us find the correct treatment for them.”

I hear over and over again, my Doctor would not test for Celiac.  Why?  I don’t get it!  I realize that Doctors are bedeviled by patients who come in with their own diagnosis, but if a person has gastro issues, or other unexplained symptoms on our long list of potential problems, what is the harm in giving  a blood test?

I know this is not scientific, but I’ve been keeping a spreadsheet of people I’ve met along their way to a Celiac Diagnosis.  From this blog and from chance meeting and fairs I’ve had meaningful conversations with 157 people, of those none were tested for Celiac prior to meeting me.  37 ended up having Celiac, 38 allergic to wheat, 24 gluten sensitive and 34 with some food allergy.  Others had a mix of other issues are are still looking.

So if you have a patient sitting in front of you saying they think they fit the Celiac mold, why say no???  1 of of 133 of us have it. if you have 5,000 patients, you should have quite a few Celiacs.  Do you?

So when faced with a frustrated patient often you’ll give antibiotic, but not a blood test…why…why…why?  I wish one Doctor had listened to this overweight Celiac.  (Yes fat people have Celiac…did you know that? So do ALL ethnic groups and people without gastro issues)

UGGG…I’d love to stop hearing my Dr. would not test me

Click below for a WONDERFUL article. I thought I had it all figured out.  I don’t and Dr. Fasano DOES!

fasano1

Celiac.com 09/28/2009 – According to the results of a new Swedish study,  patients with mild intestinal inflammation and gluten sensitivity face an elevated risk of death, even in the absence of symptoms severe enough to merit a clinical diagnosis of celiac disease.

A number of studies have shown that people with gluten sensitivity and intestinal inflammation, but just how great is the risk? However, of those previous studies that show an increased risk of death associated with the disease, many were not population-based, lacked children and outpatients, while others were hampered by small numbers of participants.

A team of Swedish researchers led by Jonas F. Ludvigsson, MD, PhD, of Sweden’s Örebro University Hospital, recently set out to conduct a large-scale, population-based study regarding mortality risk levels for people with celiac disease, and also for those with “gluten intolerance.”

Ludvigsson and colleagues examined histopathology data from tissue biopsies collected from 46,121 Swedish patients nationwide between July 1969 and February 2008. Of those patients, 29,096 had celiac disease, while 13,306 showed inflammation of the small intestine and 3,719 showed latent celiac disease, elevated blood antibodies used as markers for celiac disease, but no sign of gut inflammation or damage.

The researchers compared the patient data to records of the Swedish Total Population Register to calculate mortality rates for the three groups of patients. They found that among the patients there were 3,049 deaths among those with celiac disease, 2,967 deaths for those with inflammation, and 183 deaths for patients with latent celiac disease.

The overall risk was not great, mortality risk was 75% higher for patients with mild intestinal inflammation at a median follow-up of 7.2 years (95% CI 1.64 to 1.79), and 35% higher for patients with latent celiac disease, or gluten sensitivity, at median follow-up of 6.7 years (95% CI 1.14 to 1.58).

The study also revealed that people diagnosed with celiac disease faced a 30% greater risk of death at a median follow-up of 8.8 years (95% CI 1.33 to 1.45). That means that over the 8.8 years following the study, 30% more people with celiac disease died compared to the control group.

These findings confirm previous studies that show higher mortality rates in celiac patients. Major causes of death for people with celiac disease are cardiovascular disease and cancer.

Still, overall mortality risk associated with celiac disease and intestinal inflammation for gluten intolerance was small, with just 2.9 additional deaths per 1,000 person-years for people with celiac disease, and 10.8 and 1.7 additional deaths per 1,000 person-years for people with inflammation and latent celiac disease, respectively.

Of the population-based study, Jonas F. Ludvigsson, MD, PhD, of Örebro University Hospital in Sweden, and colleagues writes,
“we examined risk of death in celiac disease according to small-intestinal histopathology…Excess mortality was observed independent of histopathology, but absolute excess mortality risk was small, especially in children.”

In an accompanying editorial, Peter H. R. Green, MD, of Columbia University Medical Center, writes that the study’s findings on patients with latent celiac disease, those patients who, in the United States, would be labeled as having “gluten sensitivity,” were the most intriguing.

Dr. Green writes that until recently, “gluten sensitivity has received little attention in the traditional medical literature, although there is increasing evidence for its presence in patients with various neurological disorders and psychiatric problems.”

Furthermore, researchers currently know little about the long-term consequences of mild gut inflammation. In such cases, patients typically show no sign of villous atrophy,  the flattening of the innermost membrane of the intestinal wall common to people with clinical celiac disease.

Overall, the “risk of death among patients with celiac disease, inflammation, or latent celiac disease is modestly increased,” the researchers concluded.

The researchers speculate that the increase in mortality might result from chronic inflammation that damages patients’ small intestines (the duodenum, specifically) or from malnutrition that saps their vitamins and energy.

The researchers did not, however, rule out the possibility that mortality may be due to other existing conditions. They also cautioned that some patients with inflammation may have been misclassified as having latent celiac disease or partial villous atrophy, skewing mortality rates upward for the latent celiac disease group.

Green concludes that the “study by Ludvigsson and colleagues reinforces the importance of celiac disease as a diagnosis that should be sought by physicians. It also suggests that more attention should be given to the lesser degrees of intestinal inflammation and gluten sensitivity.”

Source:
JAMA. 2009;302(11):1171-1178.

PEDIATRICS Vol. 113 No. 6 June 2004, pp. 1672-1676

Nathanel Zelnik, MD, Avi Pacht, MD, Raid Obeid, MD and Aaron Lerner, MD

From the Department of Pediatrics, Carmel Medical Center, The Bruce Rappaport Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel

Objective. During the past 2 decades, celiac disease (CD) has been recognized as a multisystem autoimmune disorder. A growing body of distinct neurologic conditions such as cerebellar ataxia, epilepsy, myoclonic ataxia, chronic neuropathies, and dementia have been reported, mainly in middle-aged adults. There still are insufficient data on the association of CD with various neurologic disorders in children, adolescents, and young adults, including more common and “soft” neurologic conditions, such as headache, learning disorders, attention-deficit/hyperactivity disorder (ADHD), and tic disorders. The aim of the present study is to look for a broader spectrum of neurologic disorders in CD patients, most of them children or young adults.

Methods. Patients with CD were asked to fill in a questionnaire regarding the presence of neurologic disorders or symptoms. Their medical charts were reviewed, and those who were reported as having neurologic manifestations underwent neurologic examination and brain imaging or electroencephalogram if required. Their neurologic data were compared with that of a control group matched for age and gender.

Results. Patients with CD were more prone to develop neurologic disorders (51.4%) in comparison with control subjects (19.9%). These disorders include hypotonia, developmental delay, learning disorders and ADHD, headache, and cerebellar ataxia. Epileptic disorders were only marginally more common in CD. In contrast, no difference was found in the prevalence of tic disorders in both groups. Therapeutic benefit, with gluten-free diet, was demonstrated only in patients with transient infantile hypotonia and migraine headache.

Conclusion. This study suggests that the variability of neurologic disorders that occur in CD is broader than previously reported and includes “softer” and more common neurologic disorders, such as chronic headache, developmental delay, hypotonia, and learning disorders or ADHD. Future longitudinal prospective studies might better define the full range of these neurologic disorders and their clinical response to a gluten-free diet.

Our northern neighbors in Canada have the privilege of being able to walk into a pharmacy and give themselves a home Celiac test.  Although we can quite yet, you can order a home test for Celiac disease for PERSONAL use at http://celiachometest.com/ For $50 a test kit you can find out if you have the antibodies for Celiac.   This is NOT a final diagnosis tool but a tool you can use to bring to your Doctor if you are positive.

Although Doctors are becoming more aware, many still are reluctant to test if you don’t fit the “mold” for Celiac.  Often patients do not have the typical symptoms since everyone reacts differently.  Now we have a new too.

The FDA is investigating this product and I am anxious to see it hit the stores.  You can order it now, so if you suspect you have a problem, don’t hesitate to do so.

Symptoms: Retractable Seizures (uncontrolled), fatigue, muscle loss, headaches, brain fog, itching,bloating, canker sores, insomnia, very fussy eater
Family History: Mother has Parkinson’s, no other family history known, but at least one sibling has symptoms. Son has Asbergers Syndrome, stunted growth, ADHD and is in process of a possible diagnosis.
Allergies: None known
Medical Misdiagnoses: Seizures were diagnosed, but cause was never found. Celiac Disease most likely missed for 31 years

Without warning on the eve of his senior prom, Dennis had his first night seizure. There was no history of fever or head injury. At first Dilantin controlled his symptoms with little seizure activity through his college years. In his late 20’s, early 30’s the seizure increased in frequency. 13 different medications were tried with each working for a period of time and then losing their effectiveness. Over time he had to stop driving, change careers due to frequent seizure activity. One of the finest hospitals in the world tried every type of treatment from a mapping of his brain to find his seizure centers (42-too many to treat) to a vagus nerve stimulator. None worked.

A chance meeting with me brought Celiac into focus for him and I started to connect all of his symptoms with a possible Celiac diagnosis. Although he did not have “typical” symptoms, the late onset of his seizures raised some red flags for me. I had met many along my path with similar seizures that all stopped responding to medicine. I connected that with his son’s learning disabilities, his itching, brain fog etc . and thought there might be a connection. I used him as a guinea pig with the new home test for Celiac that can be found at www.celiachometest.com. He came up positive and this was confirmed with a blood test (numbers all WAY above 100…across the board) and finally a biopsy.

Although no one can 100% say his seizures are from Celiac disease, there is strong evidence they are. We are anxiously waiting to see if his seizure threshold improves. Although the Doctors don’t think he’ll be medicine free, we are hopeful that he will respond better to  and have a higher quality of life. What can be said is he would have continued to decline over time if this had not been found.  What might have happened if he had gone gluten free earlier in life?

Why was he never tested? There have been numerous studies done linking seizures to Celiac, but none have “hit the bulls eye.” My radar went off merely because I’ve met others like Dennis and thought it was worth testing. How about it out there Doctors? Have a patient with seizures with no real cause? Why not order a Celiac test? Dennis has cost insurance companies tons of money over the years with brain surgery, vagus nerve surgery and untold emergency room visits and Doctors appointments. A simple blood test screening could have saved tons of money and grief for all.

Stay tuned…I’ll keep you up to date.

Symptoms:  Extreme Fatigue, Irritable Bowel Activity
Family History:  Father’s Aunt and Grandmother had Diabetes
Allergies:  All grasses, trees, pollen, ragweed and dogs
Medical Misdiagnoses: 0 (although they sure took their time about it)

My name is Bethany and my story is partially about allergies and partially about other diseases.  As my tale unfolds, you’ll see that the two work together to make one sicker than they would separately.

When I was 5 or 6 years old, I had severe plant allergies.  For the next 6 years, I took allergy shots.  Then I moved to Brazil and I didn’t need them anymore.  I got many years of relief, but by 13through I started showing signs of a disease called fibromyalgia.  My energy level nosedived.  It took years for a diagnosis because no one my age is supposed to have it.  The chronic, widespread pain was bad enough but to top it all off, at 17 I was diagnosed with Irritable Bowel Syndrome.  Yes, I went through some doctors to get these two diagnoses.

About four weeks ago, I got the results of an ALCAT test that Eileen and John were kind enough to buy for me.  My histamine count was through the roof!  I knew I would have some allergies such as Basil, which makes my skin itchy and causes red splotches.  Little did I suspect that my list would have 34 food allergies!  From a food shopping perspective, I’m lucky that only corn is on the moderate or severe list and I have no problems with gluten.  What’s difficult is that almost every meat is on the list:  lamb, beef and lobster on the moderate or severe list and chicken, crab and pork on the moderate list.  I am so not interested in going vegetarian.

I’ve stayed away from everything on the ALCAT’s severe intolerance column and I’m doing a rotation diet on some of the others (i.e. once every four days only for a particular low or moderate intolerant food item).  It’s helped, but the biggest eye opener was the difference in hormones, antibiotic and processing between the U.S. and Brazil.  I had no problems with this in South American, but here in the States, I couldn’t have milk after 4 p.m. without causing gastrointestinal problems.  So I tried organic milk… low and behold, I can have it any time I want and in large quantities without a problem.

Another example occurred two weeks ago.  I went to visit a friend in Oregon and I had corn, which is on my “forbidden” list.  I had no problem with it, yet here in Maryland it causes me nothing but problems.  I suspect it’s the chemicals here in the corn.

So these two events got me thinking.  I had no problems in Brazil or with organic milk in the states… what if hormones, antibiotics and food processing are causing the problems I have with the others on the list?  Maybe I can have some of them if they’re organic.  At present, I don’t know how this is all going to turn out, but I can say that staying away from allergic foods and eating natural makes a big difference when you’ve got other diseases to contend with.  I’m living proof.

Bethany K.
Ghost-written by John S.

P.S.  Would you like to tell your story?  I’ll be your ghost writer.  Email me!

Symptoms:  Energy Loss and Energy Swings
Family History:  No Disorders
Allergies:  None
Medical Misdiagnoses: 2

Permit me to introduce myself.  I’m John Simpson, Eileen’s husband.  What I’m going to do is start a special series on Eileen’s blog covering medical misdiagnoses, celiac disease, gluten intolerance and allergies.  As you read the real life stories of others who have experienced these problems, you may find that one or more of your health issues coincide with what others have experienced.  I’m here to say you are not alone.

Let me tell you my story.  About six weeks ago, I got the results back on an ALCAT test.  Gluten intolerant.  That wasn’t so bad, but there were 19 other items I had sensitivities to.  The killers:  beef (favorite meat), corn (favorite food), apple (pectin is everywhere!), banana (favorite fruit), sweet potato (no more Outback Steakhouse), lobster (so much for high class), crab (I live in Maryland) and coffee (anything but that).  I won’t bore you with the rest.  Needless to say, I was devastated.  I pictured myself eating Japanese the rest of my life.

So that got me taking a path down memory lane.  I had no problems with any of this stuff until my late 30’s/early 40’s.  When Eileen and I met, I was an active long distance runner and skinny as can be.  I had more energy than a nuclear reactor.  I was the kid who the parents thought was crazy because I went door to door for the kids to play kickball… when it was 96 degrees out with 100 percent humidity!  Then one day a couple of years ago or so, Kyle came home sick with a variant of the “foot and mouth” disease.  Naturally, I got it too.  That was the trigger for both of us.   As you know from Eileen’s blog, he lost all his body hair.  As for me, that’s when my body started attacking my pancreas.  You guessed it… I was diagnosed as diabetic.  My energy level would go from low to high.  I wound up exhausted or hyper most of the time (the hyper part was great for running and I could run for 1-1.5 hours and feel fresh like I slept 10 hours).

So I countered it by drinking coffee.  Lots of it.  Dunkin Donuts was my sensei.  I would have a large cup with Spenda and be on top of my game!  That is, for about an hour.  As you’ve surmised, I was very allergic to coffee, so as I sought more energy, I was just taking more away after the caffeine wore off.  I was topping out at 8 cups a day.

The first doctor I went to said I was “pre-diabetic”.  He blew the diagnosis and simply offered dietary changes via a dietitian.  Well, all that did was waste time.  So we changed doctors and I went through the same tests.  This time, I got the full Monte.  The new doctor said I was Type 1.5.  Every heard of that?  It means my pancreas still works in spurts and I’m destined to be a full Type 1 insulin dependent in a year or two at most.

During this time, I was starting to have trouble with my running.  It was getting impossible to run an hour at all, let alone four days a week.  I was also starting to feel really tired in the afternoon.  So I tried mixing up my lunch.  Nothing seemed to work.  I changed foods and changed quantities.  Nothing worked.  During this time, Dunkin Donuts stopped working for me.  No longer did it perc me up.  I knew I had a problem that transcended diabetes.

The second doctor blew his diagnosis too.  After almost 3 years, I’m still around and my pancreas still works.  There’s no way I’m a Type 1.5.  So I figure I’m a Type 2.  I’ve had a lot of time to think about it and I have a theory I’d like to share that explains this all.  It also explains my energy problems.

I don’t believe I was born with any of these allergies and I certainly wasn’t diabetic.  Somewhere along the line, I believe that all the chemicals we ingest build up in the system.  They say some things like certain metals never go away.  What happens is that they make you vulnerable to any major shift in body chemistry.  The disease that hit Kyle and I triggered a reaction in me that  increased my histamine levels to stratospheric levels.  So at Eileen’s advice, I got the Alcat test and you know the results.

As for my problems, it took a week to get over my coffee addiction, which was no fun.  After a couple of weeks, I was a new man.  I didn’t see Brad Pitt in the mirror, but I felt like him on the inside.  My daily energy problem was due to my body’s reaction to allergic food that I ate every meal.  I ate one or more allergic foods for lunch and bingo… nap time a couple hours later.  As for my running, I suffer from a steep drop in blood sugar, but by taking a glucose pill before I begin, I seem to have it licked.  Sometimes you just have to diagnose yourself.

The reason I say all this is not to have you shed any tears.  I simply want to say that our doctors don’t take the time to order the right tests even if they cost money.  The result is misdiagnoses.  The other moral of my story is that we are what we eat.  Some of the stuff will build up in your system.  You may see your body responding by attacking itself and/or suddenly becoming allergic to various foods.  Even if you’re not allergic now, the older you become, the greater chance  you will be a candidate.

So get a food allergy test even if you think you’re not allergic to anything.  Do it every five years or so.  Your body will thank you.

John S.

P.S.  Would you like to tell your story?  I’ll be your ghost writer.  Email me!