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  • Jefferson Adams
    Jefferson Adams

    How Many Doctors Does It Take to Diagnose Gluten Sensitivity?

    Reviewed and edited by a celiac disease expert.

    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.

    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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    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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    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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    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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    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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    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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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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