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    How Many Doctors Does It Take to Diagnose Gluten Sensitivity?


    Jefferson Adams

    Celiac.com 01/09/2015 - A recent article by Jody Berger provides a cautionary tale for anyone suffering from non-classic symptoms of gluten-sensitivity or celiac disease.


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    Photo: CC--Waldo JaquithBerger, it turns out, has non-celiac gluten-sensitivity. Sounds simple enough, right? But in Berger’s case, it took her one year and visits to a dozen doctors to get an accurate diagnosis.

    Berger’s main symptom was tingling in her fingertips, a feeling of slight pins and needles, as if they were waking from a deep sleep. The sensation wasn’t painful, she said, but it was persistent, and concerned her enough that she sought medical help to figure out the cause.

    When her first doctor diagnosed her with multiple sclerosis after a very brief visit, Berger sought a second, then a third, then a fourth opinion. In the course of her many visits, doctors told her she had nutritional deficiencies, heavy metal toxicity, Lyme disease, and depression.

    After a dozen visits, she finally found an osteopath who was “well-versed in systems thinking,” and another physician who had trained in ayurvedic medicine, a holistic system of healing.

    The tingling, which the first doctor believed to be a sign of MS, is actually a fairly common, though not classic, symptom of gluten sensitivity.

    This story highlights the amount of work patients can face when they present with atypical symptoms of gluten-sensitivity. Many times, well-intended doctors can simply miss the dietary connection and get the diagnosis wrong.

    Do you have a similar story of well-intended, but misguided doctors wrongly diagnosing gluten-sensitivity or celiac disease? 

    Read more about Berger’s year-long Odyssey here.

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    Guest Ed Arnold

    Posted

    Took me 12 years to get a diagnosis, and it wasn't from an M.D. So in the lightbulb joke vein:

     

    Q. How many doctors does it take to diagnose gluten sensitivity?

    A. One naturopath to diagnose, and 20 M.D.s to declare that the N.D. is a quack.

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    Guest Peggy Brucker

    Posted

    It's about time we talked about the "popular medicine's" attitude about celiac and autoimmune disease that is caused by food. I am celiac and a few other fun diseases. I was born with celiac and was sickly since birth. It took 45 years and many doctors being fired before my boss told me to seek a naturapath. I have been diagnosed with everything until she found 3 autoimmune diseases and my bowels were so messed up from "prescriptions" for diseases and mental health issues I did not have. Yes I was diagnosed with depression as well...oh and fibromyalgia (which is a non answer fashioned from ignorance and the pharmaceutical companies) and put on Cymbalta...which nearly killed me as it contained ingredients that caused the disease in the first place.......Please if you suspect a health issue of any kind...don't take the first doctors opinion....or the second or third....go to a Naturapath...research and find your own answers. I did it took me 6 years but now I am healthier (no trace of mental health issues).

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    Me, myself and I. And the doctors still stare at me and think I'm crazy when I tell them. If they only knew how much better I feel without gluten. No post nasal drip, no dry eye, no RLS, no heartburn, no insomnia, no bloated stomach, no IBS and best of all no meds for most of the above. Soon after indulging all symptoms resurface. Despite ending up in the hospital because of severe pain in my stomach on many occasions and having an endoscopy the doctors never even mentioned celiac or gluten sensitivity.

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    Thanks for addressing this issue. I have a 40 year old tri-athlete sister who is celiac with rash and severe numbing throughout limbs--diagnosed with too much protein in the blood and on prednazone and rituximab (chemo) Not working. I wonder why? NOT.

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    I had the classic celiac symptoms all of my life. First diagnosis, MD said I was just 'High strung', which was a way of saying, 'Nuts'. Many MD's later, I was diagnosed with Hashimoto's hypothyroid disease and anemia, which I do have. Later, Atopy and Atopic dermatitis. Many years later, a DO finally diagnosed Celiac, which was what I had to begin with.

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    I have suffered for years, since I was 35 and just this past year was diagnosed as border-line celiac. I am now 64 and finally have some relief. It was like a miracle, when I stopped eating gluten! No joint pain anymore and several other symptoms, including all the stomach problems that go along with it. I think the MD's ignore it because there is no money for them, they can't give you drugs to help, so they put off testing. Elivil did it for me, since going on it, I feel 99.9 percent better.

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    Guest donald eldridge

    Posted

    Good informing story and I hate to say it but many doctors coming out of schools are poorly instructed.

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    This is disheartening as I have only seen 2 MD's for my non classic symptoms on my so far 1 year journey. PCP has been very supportive and my Gastro is well, interesting. Gluten challenge is complete and endoscopy with biopsies were done last week. So we will see what the results have to say.

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    Pediatrician, 2 allergists, another pediatrician, immune specialist, and finally pediatric GI specialist--who has celiac. That's what it took to get my toddler son diagnosed. They made me feel crazy when I knew something was wrong. Never doubt a mothers instinct.

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    Took me 12 years to get a diagnosis, and it wasn't from an M.D. So in the lightbulb joke vein:

     

    Q. How many doctors does it take to diagnose gluten sensitivity?

    A. One naturopath to diagnose, and 20 M.D.s to declare that the N.D. is a quack.

    Same story for me!!

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    After the diagnosis, the gravy train is over. They can't make any money on a diet change.

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    Took 13 years to get a diagnosis. Was very anemic and did not absorb any form of iron I was taking. I will say I had several things wrong and no one was picking up on any of it. After all is said and done I have had a hysterectomy, started taking meds for myoclonic epilepsy and thyroid meds for Hassimotos. Finally I will say after all this and going gluten free my iron is up and I'm feeling better!

     

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    I've been getting hives and welts all over me for 3 years also joint pain and bloating. I feel it's linked to food but keep getting no explanation from doctors. I'm extremely frustrated

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    This is disheartening as I have only seen 2 MD's for my non classic symptoms on my so far 1 year journey. PCP has been very supportive and my Gastro is well, interesting. Gluten challenge is complete and endoscopy with biopsies were done last week. So we will see what the results have to say.

    Be aware that if you are off gluten the endoscopy with biopsies might come back negative, you have to have some gluten for them to test positive. If being off gluten makes you feel better then you are doing the right thing by staying away from it. We know our bodies best, you have to be your own doctor, sometimes.

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    Guest Frances L. Garcia, MD, FAAP

    Posted

    I am a physician and a celiac, among several other rare genetic diseases. It took 15 years for a diagnosis. Why? because we are told in med school that it is limited to Caucasians and is very rare. I remember thinking, way back in med school, that it had to be horrific to live with this. I am Hispanic (with Jewish and Arab great-grandmothers, which adds to the risk) Due to the many years of exposure to gluten, I now have several autoimmune diseases and neurological damage. No, most of us are not simply out to make money, it is that this is really is not as rare as medical literature would make you believe and there is overlap and co-existence with other autoimmune illnesses: Migraine, thyroditis, systemic lupus, Addison's disease, vitamin and mineral deficiencies, loss of bone density ( my brother's only symptom!) type 1 diabetes,peripheral nerve damage (tingling and burning sensations!) IBS, Raynaud's, Menier's and many others co-exist with or are caused by GE and GS. Oh, and do not forget depression and increased risk for cancer. Hence, the difficulty in diagnosis. Interestingly, the gene overlaps with that of Inflammatory Bowel disease and spasmodic non-kinesigenic dyskenesia (which i have developed). So the story is much more complex than doctors trying to make themselves rich or poor medical education. Physicians are much more aware of the condition now than when I stated with symptoms. Now we need to make the pharmaceutical companies aware of the frequency of the illness so that gluten is removed from drugs.

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    Guest Myra  L. Jones

    Posted

    I can truly relate to this story, I had become very sick , loosing weight , hair falling out , labs were showing very low potassium levels , as well as B12 levels. I was thought to have had Collegens vascular disease, but did not fit the criteria. I began to have severe, what I believed to be constipation, blotting pain upon straining to move my bowels, continued hair thinning and loss and several years later I had to have a subtotal colectomy with a bowel resection, which I relate to celiac disease, but it was a second surgery that I presented with bi-lateral neuropathy of the legs and feet, which lead to a correct diagnosis of celiac disease after having to have a neurologist called in during that hospital stay . After careful examination, I was diagnosed with celiac disease. I had many of the classic symptoms, but was being treated for constipation with the bulk laxatives which contained wheat. This process took many years, maybe because then, there was not very much information about celiac disease or gluten sensitivity, generally barley and and rye should be avoided if you are allergic to wheat. Staying gluten-free is not so simple and should be followed by your doctor, or nutritionist.

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    Everbody who can't get help from their doctor - just stop eating gluten now.

     

    Change your diet. Eliminate food groups that we know cause sensitivities: Gluten, Wheat, Dairy, Eggs, Soy etc..

     

    Replace all that crap with fresh veggies, fruit and lean healthy meats.

     

    The medical system sucks and most doctors are a*#)$!$holes.

     

    Yes, people grimace and laugh and at times tell me "It's in your head!" or "You self diagnosed?? You're not a Doctor!".

     

    You know what? I don't care. I'm not sick anymore.

     

    I'll continue to self diagnose and heal myself.

     

    Stop eating gluten even if you don't think you have a senstivity.

     

    What are we eating this crap in the first place?

     

    Pizza?

     

    Donuts?

     

    Bagels??

     

    I'll take my health over donuts.

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    Guest Suzanne

    Posted

    I am a physician and a celiac, among several other rare genetic diseases. It took 15 years for a diagnosis. Why? because we are told in med school that it is limited to Caucasians and is very rare. I remember thinking, way back in med school, that it had to be horrific to live with this. I am Hispanic (with Jewish and Arab great-grandmothers, which adds to the risk) Due to the many years of exposure to gluten, I now have several autoimmune diseases and neurological damage. No, most of us are not simply out to make money, it is that this is really is not as rare as medical literature would make you believe and there is overlap and co-existence with other autoimmune illnesses: Migraine, thyroditis, systemic lupus, Addison's disease, vitamin and mineral deficiencies, loss of bone density ( my brother's only symptom!) type 1 diabetes,peripheral nerve damage (tingling and burning sensations!) IBS, Raynaud's, Menier's and many others co-exist with or are caused by GE and GS. Oh, and do not forget depression and increased risk for cancer. Hence, the difficulty in diagnosis. Interestingly, the gene overlaps with that of Inflammatory Bowel disease and spasmodic non-kinesigenic dyskenesia (which i have developed). So the story is much more complex than doctors trying to make themselves rich or poor medical education. Physicians are much more aware of the condition now than when I stated with symptoms. Now we need to make the pharmaceutical companies aware of the frequency of the illness so that gluten is removed from drugs.

    Thank you, Dr. Garcia. A breath of fresh air to hear from a medical doctor who understands the diagnostic challenge. My doctor told me she was taught in med school that celiac disease was so rare (1:10.000) that she would probably never encounter it during all the years of her practice. Hopefullly, times have changed and med schools have updated their textbooks.

    Thanks again.

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    Guest Jefferson

    Posted

    I am a physician and a celiac, among several other rare genetic diseases. It took 15 years for a diagnosis. Why? because we are told in med school that it is limited to Caucasians and is very rare. I remember thinking, way back in med school, that it had to be horrific to live with this. I am Hispanic (with Jewish and Arab great-grandmothers, which adds to the risk) Due to the many years of exposure to gluten, I now have several autoimmune diseases and neurological damage. No, most of us are not simply out to make money, it is that this is really is not as rare as medical literature would make you believe and there is overlap and co-existence with other autoimmune illnesses: Migraine, thyroditis, systemic lupus, Addison's disease, vitamin and mineral deficiencies, loss of bone density ( my brother's only symptom!) type 1 diabetes,peripheral nerve damage (tingling and burning sensations!) IBS, Raynaud's, Menier's and many others co-exist with or are caused by GE and GS. Oh, and do not forget depression and increased risk for cancer. Hence, the difficulty in diagnosis. Interestingly, the gene overlaps with that of Inflammatory Bowel disease and spasmodic non-kinesigenic dyskenesia (which i have developed). So the story is much more complex than doctors trying to make themselves rich or poor medical education. Physicians are much more aware of the condition now than when I stated with symptoms. Now we need to make the pharmaceutical companies aware of the frequency of the illness so that gluten is removed from drugs.

    Well stated! It's interesting and helpful to hear from a physician who has experienced this first hand. Thank you!

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    Guest Linda Ostrow

    Posted

    Me, myself and I. And the doctors still stare at me and think I'm crazy when I tell them. If they only knew how much better I feel without gluten. No post nasal drip, no dry eye, no RLS, no heartburn, no insomnia, no bloated stomach, no IBS and best of all no meds for most of the above. Soon after indulging all symptoms resurface. Despite ending up in the hospital because of severe pain in my stomach on many occasions and having an endoscopy the doctors never even mentioned celiac or gluten sensitivity.

    It took me four years for a diagnosis after seeing most dermatologists in my town. It was an allergist who saw my DH 'bumps' and said 'I believe I saw something like this in a textbook'!!! That's how I was diagnosed......sheer luck. Then I ran into of the dermatologists I had seen and told her the diagnosis and her response was 'oh no one can follow a gluten-free diet'. Some help she was.

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    I am a physician and a celiac, among several other rare genetic diseases. It took 15 years for a diagnosis. Why? because we are told in med school that it is limited to Caucasians and is very rare. I remember thinking, way back in med school, that it had to be horrific to live with this. I am Hispanic (with Jewish and Arab great-grandmothers, which adds to the risk) Due to the many years of exposure to gluten, I now have several autoimmune diseases and neurological damage. No, most of us are not simply out to make money, it is that this is really is not as rare as medical literature would make you believe and there is overlap and co-existence with other autoimmune illnesses: Migraine, thyroditis, systemic lupus, Addison's disease, vitamin and mineral deficiencies, loss of bone density ( my brother's only symptom!) type 1 diabetes,peripheral nerve damage (tingling and burning sensations!) IBS, Raynaud's, Menier's and many others co-exist with or are caused by GE and GS. Oh, and do not forget depression and increased risk for cancer. Hence, the difficulty in diagnosis. Interestingly, the gene overlaps with that of Inflammatory Bowel disease and spasmodic non-kinesigenic dyskenesia (which i have developed). So the story is much more complex than doctors trying to make themselves rich or poor medical education. Physicians are much more aware of the condition now than when I stated with symptoms. Now we need to make the pharmaceutical companies aware of the frequency of the illness so that gluten is removed from drugs.

    Thank you. I am a 72 year old female. As a child I had constant sore throats, body pain, soft teeth, raynauds. Was told I possibly had polio, scarlet fever? At 21 chronic anemia, given B-12 shots. At 33 had a perforated ulcer. Following ulcer surgery I had severe reactions to foods: milk, corn syrups, cereals, pancakes etc. most foods dumped. At 40 I had gall bladder, stomach resection, and hysterectomy both ovaries removed all in the same year. Surgeries helped but still had "IBS symptoms". GI insisted there were no diets that could help. I knew food was an issue. Found a book on self diagnosis of food intolerance. My problems were processed foods, corn syrup products, milk so I changed my diet . GI doctor still insisted it was because my stomach surgeries caused unusual symptoms. Can you imagine my surprise when I learned about celiac. No blood test will confirm. I have been wheat (gluten) free from self awareness for years. I don't think the doctors meant harm; I think they just didn't realize issues. I believe my mother, grandmother and aunt have issues also but went missed diagnosed. It is a relief to have doctors now recognizing problem and now making recommendations for IV drips for iron, IV treatments for osteoporosis etc. I am just very thankful for the relief I am getting from joint pain and feel fortunate to be as healthy as possible.

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    All the information people have posted is most helpful. If 100 people read it and 50 find out they fit all or part of what is here, then 50 will start feeling better in a few months. I still struggle with staying gluten free myself. Having had contact dermatitis periodically most of my life, eczema, stomach aches, anemia at a young age, frequent headaches, brain fog, achy joints, post nasal drip, constipation, urinary incontinence and recently some bowel issues it is important to stay away from gluten. Hair colors have also been an issue for me, my hairdresser has gone through many brands to get one that I don't react to. She says I am not the only client she has with this problem, not so uncommon.

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    Jefferson Adams is a freelance writer living in San Francisco. He has covered Health News for Examiner.com, and provided health and medical content for Sharecare.com. His work has appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate, among others.

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    Read more at Arizonafamily.com.

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    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com