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    Thyroid Disease, Celiac Disease, and You


    Kit Kellison


    • Journal of Gluten Sensitivity Autumn 2013 Issue


    Image Caption: Image: CC--National Human Genome Research Institute (NHGRI)

    Celiac.com 01/26/2017 - Many people with celiac disease also have thyroid issues. In fact, it's the most common medical issue that celiacs have. However, just as we were often badly under-served by the medical community, as celiac disease patients before the new guidelines were issued in 2004, now we're often left high and dry as thyroid patients.


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    Most medical professionals were taught that under-active thyroid is an easy fix with a single accurate test for diagnosis and a simple treatment. New research has shown that for 20% of patients, this is far from true.

    Unfortunately, there is wide disparity between how celiac disease is detected and treated because of a dearth of knowledge and curiosity among our medical professionals about current research. This leaves too many of us sick, and greatly reduces our functionality and productivity. Our finances can take a very deep hit when we are left unable to work while being prescribed antidepressants, muscle relaxers, sleep aids, cholesterol drugs, anti-anxiety medication, and IBS remedies when what we really need is access to the very inexpensive thyroid medication that can bring us back our lives.

    Although there is a lot of evidence that current testing standards are inadequate, this year the American Association of Clinical Endocrinologists once again refused to update standards to reflect current research. Most clinical practitioners rely heavily on the TSH test (and the Free T4 test if you're lucky) while the Free T3 test and antibody tests would render vital additional information. Large-scale tests are needed to reaffirm what the many smaller tests are pointing toward; that we need to be treated as individuals, by symptoms, not just as lab test scores.

    Like celiac disease, autoimmune thyroid disease most often affects women. Quite a large percentage of us are left feeling exhausted and in pain. Often people with undiagnosed or poorly treated thyroid issues are misdiagnosed as having bipolar disorder. We may also deal with severe insomnia, hair loss, social anxiety, and depression. This is because our cells don't have access to enough of the active form of thyroid hormone that we need (T3). Although research indicates that people need both T3 and T4, most treatment plans only offer the T4 form (such as Synthroid and Levoxyl) and too many patients aren't able to properly convert it to the more active form, T3.

    Every cell in the body requires thyroid hormone; it's no wonder that thyroid disease is devastating to so many body systems.

    Sadly, patients report being labeled as psychiatric cases when they complain about the deep fatigue, weight gain and psychological issues that can be remedied by proper treatment. They are told that because their numbers are within the normal range that their thyroid disease is not at the root of their problems. Those of us who scratch below the surface have found that the method used to determine the "normal" ranges was woefully inadequate and based on poor science.

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    Amazing ... Wow! For the last couple of weeks I've been viewing Dr. Izabella Wentz's work. A huge study that went world-wide online, as you no doubt know. The thyroid's time has come. It's been an emotional discovery for me. Last year, when symptoms became insistent, and my thyroid was checked, all the doctor did for me was to give me a life-long prescription of Synthroid. I've been a non-diagnosed gluten-intolerant for over 25 years. What a change in my life that was. Nobody seemed to know much about it when I did my research. Now here we are again, and at no time did anything I read, or anyone I spoke to, mention the thyroid connection. I was my own physician all these years. Dr. Izabella's work is an avalanche of information and help.

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    Guest Valerie Hufnagel

    Posted

    This was exactly what happened to me. After 5 endocrinologists, I finally found someone who listened to me... now I'm on Armorthyroid and doing much better.

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    Guest alba piqueras

    Posted

    Your expertise is greatly appreciated. Can you do an article on osteoporosis? Thank you.

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    Guest Lynne Bunte

    Posted

    Thank you for bringing this to everyone's attention. It is imperative to find the correct doctor and Endocrinologists do not get it. I finally found a GYN that knows how to test and attends conferences all the time to keep informed about Thyroid issues. My GP asked me if I thought she was stupid and I said yes as she failed miserably when trying to treat my thyroid issues. I am gluten free as I have Hashimoto's and gluten-free has helped to lower antibody count. I am on Nature-Throid and suggest people stay away from the synthetic thyroid meds, they do not work. A web site "Stop the Madness" has excellent information regarding thyroid disease. Thanks again for bringing this important information to the attention of those who are suffering!

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    I am on a thyroid roller coaster right now. My levels were low, and then, out of the blue, they were really high. My doctor has been testing at least three thyroid factors, but maybe not all four. Anyway, it isn't Graves disease, and the levels are slowly falling. But what went wrong in the first place? I do have celiac disease, and I believe that I have successfully eliminated gluten (for that matter, for several years, all grains) and many other foods from my diet since my diagnosis four and a half years ago.

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    Guest Amy Mitchell

    Posted

    I have gluten ataxia and hypothyroidism. I take compounded liothyronine and levothyoxine.

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    Guest Anne Sarkisian, author: Toxic Staple

    Posted

    I too have just discovered I've been on T4 thyroid meds (no T3) for the last two decades. My TSH level was 2.8. falling just within the high level of 3. Under medicare standard of care you are told it is normal, but a nutritionist I was working with was suspicious and asked that I get 4 other thyroid tests. They were all off. Within a week of getting on a med with T3 along with T4 a hip bursa pain issue that developed from a strenuous hike months before finally cleared up. I'm also doing a detox and have lost some weight, but expect most of the improvement is from the added T 3 which my cells must have been screaming for. As with gluten you must be your own advocate when it comes to your thyroid and health.

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    My journey is so similar and devastatingly worse at the same time. I am a diagnosed celiac with autoimmune skin problems related to celiac disease since 2010. I did everything I was told to do about diet changes, cleaning out my kitchen of everything that may have gluten, etc. My bathroom which was my most decorated room in my house went back to being a normal bathroom after I, too, became normal. Then 4 years later I was diagnosed with breast cancer...no one knows why, there is no connection. Then 2 years later, after I had a PET scan, they found by accident a huge tumor that took over the entire right lobe of my thyroid. I was told it could be likely metastatic and to get my life in order. My surgery was done, it was not cancer per se, it was a dead Hurthie Cell (cancerous) and Hoshomoto (autoimmune tumor). The dead cancer cell happened because of all the radiation I had as a result of breast cancer. Because it was so large and weird they sent it off to John Hopkins to be assured they were correct. Also, it had been there longer than the breast cancer. I asked, how could this be, I had yearly thyroid blood work done, I had no outward mass or lump showing and I could swallow fine. The downside, my Recurrent Laryngeal Nerve was severed in two places. My voice, swallowing and life have been compromised. I can not teach part time anymore, I can not participate in outdoor shows for my jewelry design work...my life has changed, there are no words to express across the lines of my life that are affected. This is not a boo-hoo paragraph, but a wake up call about how deceiving the numbers for Thyroid testing are and one does not know if there is a problem even if one has been judicious in their health care. There should be a more comprehensive test done once a year or every other year that would be covered by insurance. I hope this will help.

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    I am also undiagnosed as to what gluten issues I have. As I went gluten-free on my own in one more effort to prevent my allergic reactions. The allergic reactions I had created a hypersensitive smell, which caused me severe nasal problems and headaches. After going gluten-free, most of these symptoms went away. I had over 20 years of being hypothyroid before they tested me for Hashimotos. Once they found I had it, I was placed on armour (or NP). This changed also helped me. Would definitely like to hear that there is more research on the connections of these. I recently spoke to someone else who also is gluten-free and has thyroid issues.

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    It is possible to find a doctor that listens, for the most part those doctors are not endocrinologists, but rather family practitioners that deal with functional antiaging medicine. I have celiac and hypothyroid. Had cancer on the left side just a year ago which was taken out. After doing some research about the practices in Europe I realized I may not be converting T4 to T3 and instead had Reverse T3 which acts just like hypothyroid, yet the lab work was fine. I now only take T3 is 3 separate doses 3 times a day. Cytomel is not gluten-free so my doctor has it compounded for me. I feel much better, alert, finally have more energy. You need a doctor who listens to how you feel not just looks at paper.

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    Guest laura puckett

    Posted

    Amazing ... Wow! For the last couple of weeks I've been viewing Dr. Izabella Wentz's work. A huge study that went world-wide online, as you no doubt know. The thyroid's time has come. It's been an emotional discovery for me. Last year, when symptoms became insistent, and my thyroid was checked, all the doctor did for me was to give me a life-long prescription of Synthroid. I've been a non-diagnosed gluten-intolerant for over 25 years. What a change in my life that was. Nobody seemed to know much about it when I did my research. Now here we are again, and at no time did anything I read, or anyone I spoke to, mention the thyroid connection. I was my own physician all these years. Dr. Izabella's work is an avalanche of information and help.

    I had undiagnosed celiac for 42 years and I have been on a strict gluten-free diet for 10 years. I had problem swallowing since I was a child. I had a ultrasound of the thyroid done in Italy by the private doctor that discovered I was celiac while on vacation there (no doctor in the U.S. even thought of doing any testing in regarding to celiac even though I was very sick). The ultrasound showed- the doctor showed it to me- that one side of the thyroid is very irregular and, being very concerned about it, he referred me to a follow up back home in the U.S. The ultrasound was redone in the U.S. and they discovered I have a cyst in the thyroid but no report of the irregularity. The thyroid level is on the low normal. I don´t know what I should do next as I was told I was fine.

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  • About Me

    Kit Kellison works for a web-based patient advocacy group called "ThyroidChange" which is making inroads toward getting the attention that this issue deserves, and they request your help. Please visit www.thyroidchange.com and sign the petition demanding better care. There is a page for clinical studies and research papers for those who would like to further explore this topic.

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    Jefferson Adams
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    Jefferson Adams
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    The team included Vanessa Garcia-Larsen, Despo Ierodiakonou, Katharine Jarrold, Sergio Cunha,  Jennifer Chivinge, Zoe Robinson, Natalie Geoghegan, Alisha Ruparelia, Pooja Devani, Marialena Trivella, Jo Leonardi-Bee, and Robert J. Boyle.
    They are variously associated with the Department of Undiagnosed Celiac Disease More Common in Women and Girls International Health, Johns Hopkins School of Public Health, Baltimore, Maryland, United States of America; the Respiratory Epidemiology, Occupational Medicine and Public Health, National Heart and Lung Institute, Imperial College London, London, United Kingdom; the Section of Paediatrics, Department of Medicine, Imperial College London, London, United Kingdom; the Centre for Statistics in Medicine, University of Oxford, Oxford, United Kingdom; the Division of Epidemiology and Public Health, University of Nottingham, Nottingham, United Kingdom; the Centre of Evidence Based Dermatology, University of Nottingham, Nottingham, United Kingdom; and Stanford University in the USA.
    Team members searched MEDLINE, Excerpta Medica dataBASE (EMBASE), Web of Science, Central Register of Controlled Trials (CENTRAL), and Literatura Latino Americana em Ciências da Saúde (LILACS) for observational studies conducted between January 1946 and July 2013, and interventional studies conducted through December 2017, that evaluated the relationship between diet during pregnancy, lactation, or the first year of life, and future risk of allergic or autoimmune disease. 
    They then selected studies, extracted data, and assessed bias risk. They evaluated data using the Grading of Recommendations Assessment, Development and Evaluation (GRADE). They found 260 original studies, covering 964,143 participants, of milk feeding, including 1 intervention trial of breastfeeding promotion, and 173 original studies, covering 542,672 participants, of other maternal or infant dietary exposures, including 80 trials of 26 maternal, 32 infant, or 22 combined interventions. 
    They found a high bias risk in nearly half of the more than 250 milk feeding studies and in about one-quarter of studies of other dietary exposures. Evidence from 19 intervention trials suggests that oral supplementation with probiotics during late pregnancy and lactation may reduce risk of eczema. 44 cases per 1,000; 95% CI 20–64), and 6 trials, suggest that fish oil supplementation during pregnancy and lactation may reduce risk of allergic sensitization to egg. GRADE certainty of these findings was moderate. 
    The team found less evidence, and low GRADE certainty, for claims that breastfeeding reduces eczema risk during infancy, that longer exclusive breastfeeding is associated with reduced type 1 diabetes mellitus, and that probiotics reduce risk of infants developing allergies to cow’s milk. 
    They found no evidence that dietary exposure to other factors, including prebiotic supplements, maternal allergenic food avoidance, and vitamin, mineral, fruit, and vegetable intake, influence risk of allergic or autoimmune disease. 
    Overall, the team’s findings support a connection between the mother’s diet and risk of immune-mediated diseases in the child. Maternal probiotic and fish oil supplementation may reduce risk of eczema and allergic sensitization to food, respectively.
    Stay tuned for more on diet during pregnancy and its role in celiac disease.
    Source:
    PLoS Med. 2018 Feb; 15(2): e1002507. doi:  10.1371/journal.pmed.1002507

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    Source:
    BMC Pediatrics

    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.