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Found 48 results

  1. Opened a new, sealed bottle of synthroid and got a gluten reaction from the first pill. I've had celiac for 1.5 years and this is my first gluten reaction to synthroid. I was taking brand name synthroid thinking that it was gluten-free. I'm going to try the generic made by Mylan based on information on the Gluten Free Drug website. Anyone have experience / advice on this?
  2. Celiac.com 09/14/2018 - If it is really true that nobody really wants to see a grown man cry, then certainly nobody would have wanted to hang around me near the onset of a long illness whose mystery would take 14 years to solve. It began subtly and mildly in 1989, my 43rd year. I had just finished a long and exhausting malpractice suit on behalf of my daughter, an attractive, genetically-normal child who had contracted quadriplegic cerebral palsy in a completely avoidable incident of post-natal asphyxia which had radically changed the nature of life for my spouse and I. By the time 1989 rolled around, I was thoroughly exhausted and carrying a toxic load of anger directed at an incompetent member of the medical profession who had never learned the importance of state-of-the-art skills in a profession that literally has the power of life, death, and disability. From late 1989 on through 1990, I experienced strange episodes of profound sadness, usually of one to two hours duration, that became increasingly disruptive to my ability to handle a job and child-care duties. Initially, these episodes seemed to come from nowhere. Later on, I found that playing certain pieces of music of which I was fond, would send me into such intense sobbing that I would be forced to pull over if this occurred while driving. By the time 1991 rolled around, something was to be added to these periodic bouts of intense sadness. Early in that year, my daughter became very ill, keeping both my spouse and I awake at night for weeks on end. By the time the problem was diagnosed to be a dental infection and dental surgery was done, I had begun to have a sensation of “hollowness”, as though I really weren’t part of this world, most of the time. In late summer of that year, a series of events in which my subconscious had informed me that a friend had a serious illness, sent me into a final “dive”: I simply stopped sleeping more than about two hours per night. When I first stopped sleeping, I soon noticed that even low-level use of alcoholic beverages would further interrupt sleep and throw me into a state in which I couldn’t think of anything but how terrible I felt. This state of pronounced alcohol intolerance would continue for 14 years. The final blow came in November 1991, when I went into a completely disabling panic/anxiety attack that sent me to bed, cowering. I had no alternative but to seek treatment from the psychiatric profession. Unfortunately, the first two psychiatrists prescribed drugs which either had no effects, or had effects that seemed worse than the problem they were supposed to solve. The third psychiatrist, whom I stuck with for about six months, came up with a treatment plan that was partially effective (but certainly not restorative). I stayed with this psychiatrist until it became clear that his treatment was equivalent to Jefferson Airplane singing “one pill makes you larger, and one pill makes you small”. I was being jacked up every morning by a toxic, activating SSRI anti-depressant so I could semi-function, and then dropped by benzodiazepenes every night into a non-restorative twilight sleep state. In retrospect, the most amazing thing about these first three psychiatrists was that not one of them ordered any tests of my endocrine function. Treatment consisted solely of a series of benzodiazepenes, anti-depressants, mood stabilizers, and anti-psychotics, administered in a trial-and-error fashion that yanked my psyche and body chemistry around like a manic pit bull on a two-foot leash. Throughout the latter part of 1992, I transitioned to care with my primary-care physician, mostly because I trusted him more than any of the psychiatrists I had seen up to that time. He was able to stabilize me with one of the old tri-cyclic anti-depressants, doxepin, along with low doses of valium. Although doxepin packs a big morning hangover for many who use it, and has very strong anti-cholinergic effects, its ability to put me out at night helped me function satisfactorily for much of the 1990s, even at doses as low as 10mg, once daily in the evening. In 1993 I consulted a highly-recommended psychiatrist, who was the first psychiatrist who actually looked at my thyroid function. When my TSH was measured at 3.5, without also checking my FT3 and FT4, that doctor concluded that thyroid was not my problem. Of course, standards of thyroid diagnosis and treatment have changed radically in the 12 years since. Under the new AACE guidelines, a TSH of 3.5 would now be suspect, because studies of patients with TSH over 3.0 have shown that most progress to hypothyroidism (i.e., TSH greater than 5.5). The new AACE guidelines would mean that further testing and evaluation should be done. Until the fall of 1997, I continued treatment with doxepin and intermittent valium, adding the practice of meditation to help calm myself. At that time, I came back to my primary-care physician with the symptom of profound exhaustion on top of the symptoms of insomnia, anxiety, and depression I had suffered for years. Fortunately, my GP was suspicious of thyroid function, and found that my TSH was floating above 8. Since this was well above the old/traditional limit of 5.5, he was ready to start treatment, with (as would be expected of most GPs) T4-only replacement. I began taking thyroxine (T4) shortly thereafter with high hopes. Initially, the treatment was successful: getting the added thyroxine into my system caused an immediate improvement in quality of sleep. However, the use of T4 did not turn out to be an unqualified success. After use of T4 for about a month, it was apparent that use of thyroxine alone did not produce a full recovery—I still suffered from anxiety, which the medication seemed to be increasing. In the meantime, hair loss became an issue. Several years earlier, I had noticed that running my fingers through my hair would produce an unpleasant sensation, almost as though the hair roots were tender. By the time of my 50th birthday, in 1996, I had noticed that my pillow was virtually coated with hair by the time I would remove it for washing. Unfortunately, nobody, including my GP, reminded me that hair loss is a prime symptom of hypothyroidism; and, like most males, I was ready to assume it was plain old male pattern baldness. By the time I was treated correctly and the hair loss stopped, I had pronounced thinning on the crown which was too advanced to be reversed in response to the treatment of the thyroid problem. In about 1998, I began experimentation with amino acids which was to last for almost seven years. I found that use of tryptopan, 5-HTP, and GABA could reduce (but not correct) the worst of my symptoms. In retrospect, though, use of amino acids is a poor substitute for a well-functioning thyroid, as well as being expensive and inconvenient. By the summer of 1999, I had reached a paradoxical situation. Experimentation had shown that my body needed on the order of 100 micrograms of thyroxine (T4) to keep my TSH down to a reasonable level; yet taking that much T4 was causing intense anxiety, requiring me to use strong sleeping medications. By late summer 1999, I had noticed another distressing symptom—my acute sense of hearing was being increasingly impacted by tinnitus. Evidently, the root cause that drove me into hypothyroidism, could also impact hearing. It was soon after a household move in the spring of 2000, that I had a partially-disabling attack of severe epicondylitis (more commonly known as tennis elbow). It was obvious that my body was no longer able to handle the short-term stresses of the hard physical work required by a move. This obvious physical symptom, accompanied by increasing periodontal issues and continuing mental issues, prompted me to seek other treatment. In September 2000, I began seeing a prominent “metabolic” doctor (M.D.) who is well known for his treatment of the metabolic disorders of diabetics. This doctor has written a number of books related to dietary changes and supplements needed to stave off metabolic degeneration as one ages. I was switched to Armour thyroid, and began treatment with other hormones (primarily hydrocortisone in low doses to supplement adrenal function, and pregnenolone). I took an enormous range of nutritional supplements recommended by this doctor, and also made radical changes in diet, which I maintained for nearly two years. Unfortunately, nothing seemed to really work—I did not obtain substantial relief of my symptoms. A thyroid test in Sep 2001 still showed unsatisfactory results—my TSH was 4.7, and my FT3 was below the bottom of the normal range. By the spring of 2002, I had decided I would have to take my care elsewhere if there were to be progress. After doing a brief telephone consult with a naturopath outside my home state, I began seeing a naturopath in my home town for whom I had obtained very positive recommendations via a web search. By March 2002, the naturopath had informed me that testing showed my hypothyroidism was due to anti-thyroid antibodies, i.e., my body was attacking its own thyroid gland. This condition is officially known as Hashimoto’s Autoimmune Thyroiditis (HAIT—as I now know, HAIT is the leading cause of hypothyroidism). I found this discovery quite amazing; how come the three endocrinologists I had seen between 1998 and 2002, had not given me this information? I was started on Thyrolar (synthetic combination T3/T4) by the naturopath, because she said that my body’s ability to make T3 may have been compromised by HAIT. Soon after beginning to see the naturopath, I learned that Dr. Stephen Langer of Berkeley, CA might have additional information on the problem I had been having with thyroid hormone causing anxiety in a hypothyroid patient. I had searched for information about this syndrome in a number of places but found nothing; for instance, the well-known book “Thyroid Solution”, by Ridha Arem M.D., contains no information on the condition. So, I consulted with Dr. Langer and learned that a small percentage of people with Hashimoto’s are exquisitely sensitive to even low doses of Thyrolar. In fact, the condition is rare enough that virtually no GPs, and only a few endocrinologists, know of its existence. Apparently, it does not have an official name attached to it. I decided to refer to it as “HAIT anxiety syndrome”, although there are a few doctors who prefer to refer to any neurological symptoms accompanying HAIT as “Hashimoto’s Encephalopathy”. I began to feel a little better between March 2002 and June 2003. I’m not sure why the message about gluten grains had not penetrated before, but by June 2003, the naturopath reminded me again that she had seen a positive result to a test for antibodies to gliadin (one of the two major proteins in gluten grains) in 2002, and that I really should consider removing gluten grains from my diet. This recommendation was based on three factors: I had antibodies to the protein gliadin found in wheat and other gluten grains such as rye and barley; I had anti-thyroid antibodies which were over the threshold that defines HAIT; Medicine really is an experimental science, and this experiment, in spite of its inconvenience, appeared to be worth a try. In a numbers sense, the response of my anti-thyroid antibodies to the removal of gluten grains from my diet was slow, but gratifying. My thyroperox test started off at 25, dropped to 19 within 6 months, 7 within 10 months, and became zero in less than 2 years. I eventually concluded that the removal of gluten grains from my diet was not all that difficult, partly because I wasn’t a celiac who had to worry about that last 1%. I also concluded that removal of gluten would have a positive health effect in terms of the reduced glycemic index of the foods I consumed. My symptomatic improvement thereafter was not immediate. It soon became obvious that T3/T4 treatment is not an exact science, and the proportion of T3 to T4 needs to be closer to the human body’s need, not the pig’s need (Both Armour and Thyrolar have the T3/T4 ratio of one part T3 for every four parts T4, typical of the pig’s biochemistry). For instance, in late 2003, my TSH had dropped very low, i.e. I had become clinically hyperthyroid due to excess T3 as revealed by a free T3 test. I have since gone through a couple more of these “yo-yo” episodes while being treated, which is a not uncommon event—thyroid treatment is as much art as science. Cost of treatment also became a problem. By June 2004, I began seeing a highly-recommended Physician’s Assistant (P.A.), who was known locally to be very good at thyroid treatment, and whose clinic would accept my health insurance. I continued to see the naturopath, although at less frequent intervals, since my insurance (like most) would pay nothing for naturopathy. The P.A. and the naturopath did not completely agree on treatment methods, particularly the use of adrenal supplements (hydrocortisone and DHEA in low/biologic doses) along with thyroid supplements; but they were both in agreement that I should continue to pursue combination T3/T4 therapy. So, I blended recommendations from the two for awhile, transitioning to T3 and T4 in separate tablets of Cytomel and Synthroid, so the percentage of T3 could be altered. I gradually transitioned off adrenal supplements during 2005, and very gradually increased my T3/T4 supplementation over the course of the year. Finally, by September 2005, I began to realize that I truly had recovered my health—I had episodes of feeling really good again! Still, my sleep was not perfect—I had discovered what Ridha Arem M.D. has documented in the book Thyroid Solution: a return to the euthyroid state may not immediately eliminate all symptoms. After going to a small dose of the atypical anti-depressant mirtazapine, I finally could feel, every day, like I had in my 30s. Unfortunately, it had taken an agonizing 14 years to get there. Today, I religiously take my 10 micrograms T3, and 75 micrograms T4, split into two doses each day. I also religiously avoid all traces of gluten grains in my diet because I now understand that the gluey, hard-to-digest proteins in them are a substance which can cause major metabolic disruption. Like the co-author of the book “Dangerous Grains”, Ron Hoggan, with whom I have corresponded, I have come to realize that our society’s over-use of a potentially toxic substance isn’t just dangerous to the 1 in 133 people who have full-blown celiac disease—it can cause a very poor quality of life for the approximately 1 in 5 who have gluten intolerance. I have also come to the realization that, to those few who are unlucky enough to encounter the HAIT Anxiety Syndrome, you may require combination T3/T4 therapy to feel better; and, you may never feel as well as you did when you were young, unless you find a way to stop your immune system from waging war on your thyroid. Most of all, 14 years after it started, I feel as though a significant part of my life has been taken from me. I was unable get joy or pleasure from life, I was unable to work effectively, and I was unable to be the kind of parent I could have been between my 45th and 59th years of life. I never imagine that I would be looking forward to the relatively advanced age of 60. However, given that I now feel better than I did at anytime between the ages of 43 and 59, 60 looks like a good place to be. Summary: In retrospect, the most important things I ended up learning from 14 years of very unpleasant experience are: If you have psychiatric symptoms, e.g., depression, anxiety, panic disorder, etc., make sure your endocrine system is evaluated, with thyroid testing as the cornerstone. Beware of doctors who offer an antidepressant first thing, without endocrine evaluation. The emotional/psychiatric effects of hypothyroidism are just as important, and just as damaging, as the physical ones. Unfortunately, many MD’s focus on the physical. If you want to get well, you have to apply all your skills and intelligence to investigating your problem, which most MD’s may not understand. You may also have to turn to “alternative” practitioners. If your TSH is above 3.0, or maybe even 2.5, and your doctor will not do more comprehensive testing (e.g. FT3/FT4), and/or try a test run of thyroid supplementation, find another doctor. If your doctor diagnoses you as hypothyroid, demand that a test for anti-thyroid antibodies be done. If you have any antibodies, even if they are under the threshold where HAIT is considered to start, get testing for allergy to foods, and testing for allergy to common environmental toxins if food testing reveals nothing. You may find, as did I, that you won’t feel as well as possible until you free your body from antibodies.
  3. Oops well I blew it big time. I failed to carefully read a supplement label. I saw that the company selling it said that it was gluten/soy free, but the ingredient list clearly showed that it wasn't. I took it for 200 days. I and my health care triangle couldn't figure out why I was swelling/ and gaining weight big time. The problems didn't stop there, we noted increased liver enzymes, and 3 months later sluggish kidney function. With treatment, the liver enzymes had gone down to normal levels. I kept taking the wrong supplement over last fall and winter. I felt more and more over-whelmed and unable to carry out my usual work. Finally recently, I went to order another several bottles of the supplement and discovered the ingredient list. I ran for my bottle in the freezer, oh sure, there it was. I quit taking the supplement right away. Then, it seemed like my real trouble began. My lymph system went wild, my thighs got enormous with ripples. I was cold and achy. This couldn't be from just one little bitty supplement? It was. A few months later, we tested my thyroid and found that it was working very hard. I wonder if anyone that has dealt with thyroid could answer this: Do we know the mechanism that brings a thyroid down. Is it always antibodies? We tested TPO which was negative, but didn't check the other kind of antibodies that I know of now. I am recovering so I am not sure if I should check the thyroid again and check the both antibodies or not. I can try a round of thyroid medicine to see if it helps, but would rather avoid it...well, unless I absolutely need it.
  4. I have been dealing with pain for thirty some years. I have been diagnosed with RA (sed rate high) due to joint inflammation and nodules, OA due to xray, mri results, fibromyalgia at one point because they didn't want to tell me it was all in my head and, I have nodules on my thyroid. Other than my sed rate being high, my blood work comes back "normal" so, other than the Methotrexate for RA, I am on no meds for pain. I take Ibuprofen when needed. I do not take "pain meds" because I have a low tolerance to medication and I just cant function even if I take 800mg of Ibuprofen. Example . .. I get a cold and take children's cold medicine. I take 1/2 the dose of a six year old and it knocks me out. Some days the pain is so bad, I can barely walk. My husband bought me a hot tub a few years back for my birthday and it is my go to on bad days. I was tested for Celiac's and came back okay. The only other blood work that comes back out of whack are MCHC, low . . . MCH, low . . . RDW, high, . . . ESR, anywhere from 20 to 85 but normally around 40ish . . . TSH, 2.0 or below. But, the doctors say the first three are not so far out of range that we should worry about it, the ESR just means there is inflammation and the TSH is within normal range. I have recently gone gluten, dairy, and sugar free in an effort to combat symptoms, pain and weight. I have noticed a difference in the inflammation and in my general overall wellbeing. I seem to be more attentive, have more energy, and not is no much pain. My questions are: Does anyone else have similar issues while all blood work is coming back normal? And, any suggestions on how to introduce items back into my diet to test for reactions? Should I start with gluten or dairy? The sugar I can live without. Any info would be helpful. I look things up on the internet but end up with a bunch of pop up ads for things that are going to cure me. Thanks in advance.
  5. Greetings, I was diagnosed with Celiac back in March of this year. I have been gluten-free for almost 3 months and while I am beginning to have better days, its been quite a battle. After 6 months of bouncing around to various doctors and receiving a plethora of blood tests, I finally ordered my own IGA antibody test and hit the mark with Celiac. However, while in pursuit of this diagnosis, I had my thyroid tested a number of times as well and received some peculiar results. I wanted to provide those numbers for the more experienced individuals who may be able to interpret my results as I am perplexed by them. * Note that the reference ranges listed are the same for all. TSH - (0.4 - 4.5) FT4 - (0.8-1.8) FT3 - (2.3-4.2) TAB(glu) - <1 or =1 TAB(per) - <9 Actual Results (blood NOT drawn at a consistent time) 11/16: TSH = 5.22 FT4 = NA FT3 = NA TAB(glu) = NA TAB(per) = NA 01/17: TSH = 2.48 FT4 = 1.2 FT3 = NA TAB(glu) = NA TAB(per) = NA 02/17: TSH = 7.54 FT4 = 1.2 FT3 = 3.3 TAB(glu) = NA TAB(per) = NA 02/23: TSH = 2.72 FT4 = 1.0 FT3 = NA TAB(glu) = <1 TAB(per) = 1 I understand that stress can cause a fluctuation in your TSH, however I have also read that oscillating TSH can be an early sign of thyroid problems. I have not attempted to schedule a meeting with an endo because the last test showed no issues, especially with the antibodies. Does anyone have any advice on this matter? All help is appreciated.
  6. A close family member has hashimotos but her doctors have never mentioned gluten to her as a potential trigger. They also have her on a long term course of PPI which I'm very sceptical about. As some of you can imagine I tend to see gluten behind everything and as I had thyroid related symptoms when I was on gluten which have resolved on the diet and know from this forum that there's a lot of evidence that there's a connection: https://www.celiac.com/gluten-free/search/?&q=hashimotos I want her to request celiac testing and then, if negative (as mine was incidentally), trial the gluten-free diet. Are there any good sources online which I could point her too concerning the link between the two conditions? I found this: https://thyroidpharmacist.com/articles/top-7-hashimotos-food-myths/ but I wondered if there's a good site that anyone would recommend? Many thanks for any advice you can offer or experiences you can relate Matt
  7. Hello! I could use some help interpreting a blood panel I recently had. I have hashimoto's thyroiditis, and after I asked my Endo. About the increased risk of celiac in thyroid patients, she agreed to order the lab. I still have some questions that the Endocrinoligist didn't want to or couldn't answer. I was told that though it says "results support diagnosis of celiac" that it was too weak to warrant further texting. Obviously if I don't have it, I'll be thrilled! But after following up with research, I'm not sure I agree with the conclusion to just let it go. I have spent a while now researching and I understand what levels should be expected, but the lab results are presented in a seriously confusing way. I can't quite understand which parts are results and which parts are reference ranges. I also am not sure about which tests the endo. is referring to that would not warrant another test. I pasted the results below (this is how they look, no tables...) I could desperately use some help interpreting. I can get a second opinion, but that is costly, and I don't want to do it if it's not necessary! Thank you!! Comment: Chart Name Results Flag Ref Range Units Endomys. Titer 1:5 A IGA 154 70-400 mg/dL tTG IgA 8.1 H 0.0-7.0 U/mL Note Reference range: < 7.0 U/mL = Negative 7.0 - 10.0 U/mL = Equivocal > 10.0 U/mL = Positive Celiacsero Interp See Note Note Interpretive Data: Test Equivocal Positive Gliadin IgA 7 -10 U/mL > 10 U/mL Gliadin IgG 7 -10 U/mL > 10 U/mL tTG IgA 7 -10 U/mL > 10 U/mL EMA Titer = or > 1:5 Celiacsero Ind SEE BELOW Note RESULT INTERPRETATION: Results support a diagnosis of Celiac disease. TTG, IgA EMA,IgA AGA,IgA AGA,IgG Total IgA -------- ------- ------- ------- --------- Neg Pos Neg Neg N/A Gliadin DP IgG 5.4 0.0-7.0 U/mL Gliadin DP IgA 1.4 0.0-7.0 U/mL A=Abnormal H=High
  8. Hey guys. So I was newly diagnosed with Celiac last month and was recommended to this site by my doctor for your helpful guidance to those struggling with this diagnosis. I just had some questions about some concerning symptoms that I have been having that will not go away. Any help would be greatly appreciated. I am a 23 year old very active male. I have been gluten free for over a month now eating a very strict diet. I have had extremely fatigued muscles with shaking in the hands. Its noticeable anytime I try to do something that involves fine motor skills. Also I have been very exhausted with extreme hunger cravings, especially sugary item (Despite eating a high protein, veggie diet and eating more frequently than I have in the past). The shaking concerns me and I had my resting glucose levels and resting thyroid levels tested with negative results. I am at a loss at what is causing this and it is pretty scary at times. Anyone have similar symptoms that won't subside or have any idea of what is causing it? I also had my B vitamin levels checked along with calcium and they both came back normal. The shakiness is visible slightly and was brushed off by my physician. I just want to feel at least half way normal again as my social life and schoolwork have taken major hits due to feeling sickly.
  9. Celiac.com 02/13/2017 - Researchers have noted a strong clinical association between autoimmune thyroid disease and adult celiac disease. In part, at least, this appears to be related to common genetically-based determinants as well as a common embryonic origin since the fetal thyroid is derived from the pharyngeal gut. Dr. Hugh J Freeman of the Department of Medicine, Gastroenterology, at the University of British Columbia in Vancouver, BC, Canada recently set out to review evidence from earlier prevalence studies and recent population-based studies. Specific phenotypic features have been described if both disorders are defined, including dermatitis herpetiformis, and a greater risk for a malignant complication, including lymphoma, especially if celiac disease is initially diagnosed at a late age. Some phenotypic characteristics of autoimmune thyroid disease, such as orbitopathy, may be an important clue to occult celiac disease. Similarly, patients requiring a high thyroxine dose to treat their autoimmune thyroid disease may reflect another aspect of undetected celiac disease. In some studies, the relationship has also been extended to other phenotypic features, such as dermatitis herpetiformis, and a greater risk of malignant complication, especially if celiac disease is detected in late or elderly age groups. In addition, some phenotypic characteristics of thyroid disease, such as orbitopathy and a high dose requirement for replacement may be added clinical clues to occult or undetected celiac disease. Dr. Freeman recommends that doctors consider serological screening for adult celiac disease in patients with autoimmune thyroid disease. Source: International Journal of Celiac Disease. Vol. 4, No. 4, 2016, pp 121-123. doi: 10.12691/ijcd-4-4-6
  10. Celiac.com 02/06/2017 - People with celiac disease have higher rates of autoimmune thyroiditis, and vice versa. Both of these common autoimmune diseases share multiple aspects lodging at the two ends of the gut-thyroid axis where the cross-talks' pathways are still unrivaled. A team of researchers recently set out to better understand the parameters for effectively screening patients with either disease for the presence of the other. The research team included Aaron Lerner, and Torsten Matthias of the Rappaport School of Medicine, Technion-Israel Institute of Technology, Haifa, Israel, and with AESKU.KIPP Institute, Wendelsheim, Germany. Many clinicians recommend screening patients with thyroid autoimmunity for celiac disease associated antibodies. However, the wisdom of routinely screening of celiac patients for anti-thyroid antibodies is less certain. Despite the fact that the latter screening fulfills most of the criteria for screening a disease, the timing and cost-effectiveness remains undetermined. For now, in face of celiac disease, the researchers are recommending that clinicians and practitioners keep in mind the higher rates of autoimmune thyroid disease in the interests of making timely and accurate diagnosis. Read their full report. Source: International Journal of Celiac Disease. Vol. 4, No. 4, 2016, pp 124-126. doi: 10.12691/ijcd-4-4-10
  11. 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. 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.
  12. I asked my pharmacist if Levothyroxine was safe for me to take as a celiac. She said she didn't know and told me to look at the ingredient list. Nice huh? Here's what I found. Levothyroxine Ingredients: Active Ingredients: Levothyroxine Sodium Inactive Ingredients: Acacia Senegal, Corn Starch, FD&C Blue No. 2, FD&C Red No. 40, Lactose, Magnesium Stearate, Microcrystalline Cellulose, Silicon Dioxide (Colloidal), Sodium Starch Glycolate The starch ingredient worried me, so I Googled "sodium starch glycolate" and found this: "Starch glycolates are of rice, potato, wheat or corn origin." I asked for a thyroid prescription that was on the gluten-free list and was prescribed Levoxyl.
  13. To All those who have had other disease diagnosis's before your Celiac Diagnsosis, Someone more experienced on this board might set up a poll to see how many of the tags in the thread apply to those who have received either a celiac disease or NCGS diagnosis for those who read this board. See this new research as posted on Celiac.com today http://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html?utm_source=phplist1864&utm_medium=email&utm_content=HTML&utm_campaign=Celiac.com+Update%3A+Can+Some+Celiac+Disease+Be+Treated+with+More+than+Just+a+GFD%3F A survey how many diseases other than Celiac disease were you diagnosed with before you received your Celiac Diagnosis? Or what other disease(s) do you also have as a result of either not being diagnosed with Celiac disease sooner or that are occurring with (Co-Morbid) with your Celiac diagnosis: A Survey/Discussion of how Co-Morbidity i.e., Pellagra might explain some of the GI problems you might be experiencing with/as a Celiac patient. I know of at least one other person on this board who has shown symptom improvement when using Niacin (best taken in the Niacinamide form) a harder to find flush free form that is often used in skin creams to treat dermatitis issues that might be confused for D.H. among Celiac sufferer’s. I was wondering if others’ have used it (Niacin in the Niacinamide form) for symptom relief for their GI problems. I find among my friends who try it they experience much better control from contamination issues once the Vitamin induces/causes them to burp. Has anyone else experienced similar results? Am I alone? Or would you be willing to try Niacinamide to see if it might cause burping and improve CC issues for you too the way it has me. If so please join the discussion and comment. Posterboy,
  14. Celiac.com 12/08/2008 - Celiac disease is a life-long autoimmune enteropathy that results in damage to the small intestinal mucosa. When people with celiac disease eat the gluten proteins found in wheat, rye and barley, they damage the cells that line the small intestine, which interferes with normal digestion and absorption of nutrients. Recent studies have shown that most people present with a silent, non-diarrheal form of the disease, and show no obvious symptoms. People with celiac disease face rates of autoimmune disease that are10 times higher than the general population. People with untreated celiac disease have higher rates of thyroid problems, which generally improve with the adoption of a gluten-free diet. A connection between the span of gluten consumption and autoimmune diseases has been observed in people with celiac disease. Tissue transglutaminase (TGase) is a ubiquitous enzyme and manifests in all tissues, with both intra- and extracellular localization. A team of researchers recently set out determine if tissue transglutaminase-2 IgA antibodies (anti-TGase II) present in blood samples from celiac disease patients react with thyroid tissue and possibly contribute to thyroid disease. The research team made up of doctors Afzal J. Naiyer, Jayesh Shah, Lincoln Hernandez, Soo-Youl Kim, Edward J. Ciaccio, Jianfeng Cheng, Sanil Manavalan, Govind Bhagat, and Peter H.R.Green. The team took blood samples from 40 people with active celiac disease, but not following a gluten free diet, samples from 46 celiac patients on a gluten-free diet (celiac disease), 40 normal controls (NC), and 25 with Crohn’s disease. They screened all samples for anti-thyroperoxidase antibodies (TPO-AB) and thyroglobulin antibodies (TG-AB), and conducted indirect immunofluorescence on primate thyroid tissue sections using TPO-AB– and TG-AB–negative blood samples. The team performed indirect immunofluorescence on thyroid seronegative, anti-TGase II–positive celiac disease+ blood samples (n1/423) and observed staining patterns on thyroid follicular cells and extracellular matrices that was identical with monoclonal anti-human TGase II antibody. Signs of TGase II as the antigen in thyroid tissue were reinforced by elimination of the IIF pattern when sera were depleted of anti-TGase II by pretreatment with human recombinant TGase II. The team saw no such staining of thyroid tissue in blood samples from celiac disease patients who were negative for TGase II antibodies, or samples from the non-celiac control group. Thyroid antibodies were found in 43% of celiac disease+ patients, substantially higher than NC and CROHN patients ( p < 0.0001). Moreover, a positive correlation was observed between anti-TGase II and TPO-AB titers (p1/40.0001; r1/40.63). The results show that anti-TGase II antibodies bind to TGase II in thyroid follicles and extracellular matrix, and that titers correlate with TPO antibody titers. This indicates that anti-TGase II antibodies might contribute to the development of thyroid disease in people with celiac disease. Thyroid Volume 18, Number 11, 2008
  15. Celiac.com 10/13/2016 - Researchers don't currently know much about rates of celiac disease autoimmunity or tissue transglutaminase autoantibodies (TGA) in patients with type 1 diabetes (T1D) and autoimmune thyroid disease (AITD) in the Chinese population. A team of researchers recently set out to assess rate of celiac disease autoimmunity amongst patients with T1D and AITD in the Chinese population. The research team included Zhiyuan Zhao, Jing Zou, Lingling Zhao, Yan Cheng, Hanqing Cai, Mo Li, Edwin Liu, Liping Yu, and Yu Liu. The study included 178 patients with type 1 diabetes, along with 119 with AITD where 36 had both T1D and AITD, classified as autoimmune polyglandular syndrome type 3 variant (APS3v). The study also included 145 patients with type 2 diabetes (T2D), 97 patients with non-autoimmune thyroid disease (NAITD), and 102 healthy control subjects. The team used radioimmunoassay to measure serum islet autoantibodies, thyroid autoantibodies and TGA. They found TGA positivity in 22% of patients with either type 1 diabetes or AITD, much higher than the 3.4% seen in T2D patients (p< 0.0001) the 3.1% seen in NAITD patients (P < 0.0001) or the 1% seen in healthy controls (1%; p<0.0001). Thirty-six percent of patients with APS3v who had both T1D and AITD positive for TGA, significantly higher than patients with T1D alone (p = 0.040) or with AITD alone (p = 0.017). At diagnosis, T1D and AITD showed overlap frequencies of 20% and 30%, respectively. Chinese population with existing T1D and/or AITD shows high rates of TGA positivity, which are even higher in people with both diseases. The study team recommends routine TGA screening in patients with T1D or AITD will help to identify celiac disease autoimmunity early on, and will yield better clinical patient care. Source: Plos.org
  16. Hi There- So, It's been 3-years since I was diagnosed and unfortunately, It's been all downhill since. Symptoms seem to be multiplying, not abating. Most recently, I was diagnosed with the early stages of hashimotos and prescribed a low dose of tirosint, which has made me feel very spacey, non-functional. I'm wondering if the extreme fog is any indication of pre-diabetes (have had slightly raised blood glucose level, in the 100 - 110 range for sometime) or adrenal (raised ACTH) function? Anyhow, instead of trying to dig a little deeper, my endocrinologist recommended that I see my primary care physician. WTF? Is it so difficult for practitioners to pull-up their sleeves? While I have heard very good things about my endocrinologist, I'm disturbed that he is so willing to punt. This is is all new to me frankly, as up to 3-years ago, I rarely saw a doctor...which is maybe why I'm in this bind in the first place. Anyhow, I have been to numerous specialist, none of whom have been able to provide a top down understanding of what the heck is going on here. They all (maybe understandably) operate within their own little tranche. So, I'm thinking of seeing an integrative/alternative/naturopathic doctor(s)...hoping that they can diagnose and treat what the other practitioners have not. Thoughts?
  17. Celiac.com 01/08/2016 - Adults with both celiac disease and type 1 diabetes face an increased risk of developing thyroid disease, according to a new study. The study was done by researchers Matthew Kurien, Kaziwe Mollazadegan, David S. Sanders and Jonas F. Ludvigsson. They are variously affiliated with the Department of Gastroenterology, Royal Hallamshire Hospital, Sheffield, U.K., the Academic Unit of Gastroenterology at the University of Sheffield in Sheffield, U.K., the Department of Medical Epidemiology and Biostatistics at Karolinska Institutet in Stockholm, Sweden, and the Department of Pediatrics of Örebro University Hospital at Örebro University in Örebro, Sweden. For their population-based cohort study, Dr. Kurien and colleagues analyzed data from Swedish National Patient Register between 1964 and 2009. Their team identified all 42,539 patients diagnosed with type 1 diabetes before age 31 years of age. They used small intestinal biopsy reports showing villous atrophy to identify 947 type 1 diabetes patients with celiac disease between 1969 and 2008 (55.1% women; mean age of celiac disease diagnosis, 12 years). The research team then selected up to five type 1 diabetes patients as controls for each patient with both type 1 diabetes and celiac disease, and matched them for age, sex and birth year. They selected 4,584 in all; 54.5% women. They then used Cox regression analysis to calculate hazard ratios for future thyroid disease, with celiac disease as a time-dependent variable. They found that, over an average 13 years of follow-up, 90 patients in the group with both type 1 diabetes and celiac disease developed autoimmune thyroid disease (either hypothyroid or hyperthyroid); with an average age at thyroid disease diagnosis of 25 years old. In total, nearly 11% of patients in the type 1 diabetes and celiac disease group were diagnosed with thyroid disease at some stage of life vs. 7.2% of patients with type 1 diabetes without celiac disease. Patients with both type 1 diabetes and celiac disease faced an increased risk for hypothyreosis (HR = 1.66; 95% CI, 1.3-2.12) and hyperthyreosis (HR = 1.71; 95% CI, 0.95-3.11). The RR for thyroid disease in patients with both type 1 diabetes and celiac disease was 1.67 (95% CI, 1.32-2.11). The team found the highest risk levels for thyroid disease in patients from 1964-1975, which they attributed to poor screening for thyroid disease in type 1 diabetes patients during that time. The researchers noted that the highest risks in patients with more than ten years of celiac disease, which suggests that long-term double autoimmunity is a risk factor for autoimmune thyroid disease. Source: Diabetes Care. 2015. doi:10.2337/dc15-2117.
  18. Celiac.com 02/02/2012 - A team of researchers recently conducted a prospective controlled study on a gluten-free diet and autoimmune thyroiditis in patients with celiac disease. The research team included S. Metso, H. Hyytiä-Ilmonen, K. Kaukinen, H. Huhtala, P. Jaatinen, J. Salmi, J. Taurio, and P. Collin. They are affiliated with the Department of Internal Medicine at Tampere University Hospital in Tampere, Finland. Prior to the study, there had been contradictory data regarding the ways in which early diagnosis and a gluten-free diet might slow the progression of associated autoimmune diseases in celiac disease. The research team investigated the course of autoimmune thyroid diseases in newly diagnosed celiac disease patients, both before and after gluten-free dietary treatment. For their study, the team examined twenty-seven adults with newly diagnosed celiac disease, both at the time of diagnosis and after one year on gluten-free diet. They also recorded and examined previously diagnosed and subclinical autoimmune thyroid diseases. The team used ultrasound to measure thyroid gland volume and echo-genicity. They also measured autoantibodies against celiac disease and thyroiditis, and conducted thyroid function tests. As a control group, they enrolled twenty-seven non-celiac subjects, all of whom followed a normal, gluten-containing diet. The data showed that, upon diagnosis, ten of 27 celiac disease patients had either manifest (n = 7) or subclinical (n = 3) thyroid diseases. Only three of 27 control subjects (10/27 vs. 3/27, p = 0.055) had thyroid disease. After treatment with a gluten-free diet, thyroid volume continued to decrease significantly in the patients with celiac disease compared with the control subjects, indicating the progression of thyroid gland atrophy regardless of the gluten-free diet. Overall, celiac patients faced a higher risk of thyroid autoimmune disorders than non-celiac control subjects. Moreover, a gluten-free diet did not seem to stop or reverse the progression of autoimmune disease after one year. Source: Scand J Gastroenterol. 2012 Jan;47(1):43-8. Epub 2011 Nov 30.
  19. I was diagnosed with Celiac through a blood test. My doctor was checking my thryoid levels and tagged the Celiac test on because I mentioned I was having heartburn and acid reflux that had gotten better when I cut back on gluten. My thryoid levels were normal, but he noticed my thryoid was swollen when he examined me with his hands. I was referred for an ultrasound that revealed two nodules which were later biopsied through an FNA. I was later diagnosed with Thyroid cancer and have been dealing with the emotional fallout from that. I am too overwhelmed with that, my final semester of grad school, and my demanding freelance work to seek out a doctor for the Celiac right now. I have been 100% gluten free and all of the symptoms of Celiac that I didn't even know I had are in the process of going away or are totally gone. I plan to stay gluten free for life, but am wondering what the benefits are of seeing a gastro doctor for this? If I say I don't want the endoscopy (I don't feel it's necessary and I refuse to eat gluten again for 4-6 weeks simply for this test when I know what it's doing to me), will he still refer me to a nutritionist and to other specialists for testing of associated conditions? I am particularly worried about my bone density. I am 30 and in otherwise good shape, but the thought of having another condition (I suppose cancer is the first) caused by living for so long with undiagnosed Celiac is scary to me.
  20. Hi all, I had the best Dr's appointment yesterday, with my allergist, and he got me really thinking about what's going on with my body. After we talked about my allergies and how allergy shots were going (I'm so allergic 4+ to everything), I told him that I had been diagnosed with celiac disease in January and that I was still having trouble with bloating, D and fatigue. He says have you been tested for Hashimoto's? That it goes hand in hand so often with celiac. It turns out that his wife has both! This is the first Dr. I've encountered who has actual real life experience with this disease. So, I picked his brain for a while. We talked about how there are no good celiac Dr's where we live. He and his wife have been to see Fasano. He told me if I came up with any questions about celiac to feel free to call because he and his wife have been through it all over the past 2 years. Amazing appointment...a Dr who gets it!! Anyway, I was diagnosed with hypothyroid shortly after my oldest was born 14 years ago. I've never been tested for Hashimoto's. I've only ever had TSH and T4 tested. My allergist said that until the thyroid is working the way it needs to, the gut will have issues. Is that true? Could this be part of my issue? The last time I had my thyroid checked my TSH was 4.65. So, my Dr. upped my dose to 112 mcg. That was 4 weeks ago and I'm supposed to go in 2 weeks from now to have it re-checked. I think it's time that I ask for everything else related to the thyroid to be checked. Anyone know exactly what that is and what levels should be. Almost forgot...When I had my blood work done, both my ldl cholesterol and triglycerides were high...they've always been low before. I've been having so many weird issues lately....beyond the digestive, I've got some issues with my period and have realized thanks to my food diary that all of my digestive issues get much worse from ovulation-period. So 2 1/2 - 3 weeks out of the month I feel bad. Ugh. I guess I'm searching and wondering still, but things made sense yesterday. I guess it could also be female hormones...perimenopause? I will be 43 soon. I'm wondering if anyone knows how this all works together and how Hashi's and other hormonal issues could affect things like digestion, D, bloating and fatigue. Thanks in advance for all input and wisdom!
  21. Hello everyone! Hope you are having good days. I found this forum while I was yet again Googling furiously today. I do not have diagnosed Celiac disease. I was tested by blood test about a year ago, and although I can't find my test results at the moment I remember it was borderline, my antibodies were high but they said it was negative for Celiac. Before then I had been eating gluten-free for 12 months, reintroducing gluten maybe 1-2 weeks before the test. Anyways, here are the symptoms I have....I'm just at a loss of where to turn next. I've seen so many drs., so many specialists, tried so many medications, so many diets. I'm only 26 years old, Female, BMI 23 (normal weight). I would do anything for just a partial answer on what could be causing all this: Hyperthyroidism at age 15 (complete thyroidectomy due to stage 0 tumor on thyroid), now regulated Very low weight growing up Migraines since age 7 or 8 Frequent headaches IBS-D (IBS-C as a child, real bad) Frequent nausea/bloating/feeling full too fast Severe menstrual cramps, possible endometriosis or cysts Stomach ulcers/gastritis when I take NSAID pain relievers only a couple times Infertility (trying 5 years now) Anxiety (this is kind of a chicken or egg thing, I'm sure it makes everything worse) Hypoglycemia/sharp drops in blood sugar especially after carbs Terrible teeth Frequent sinus/ear infections I didn't start my menstrual cycle until after my thyroid was taken out, so almost age 16. I was also extremely skinny. I rarely had more than 1 or 2 bowel movements a week, despite eating what was probably 3,000-5,000 calories a day. It was extremely painful and caused long term nausea. Although, I don't really notice short term a difference when I cut out gluten. I feel better in general for sure. I can't tolerate hardly any dairy without IBS symptoms, even taking Align (which is amazing btw). My mom found Celiac a couple years ago and that's when I took it seriously but my negative test results sent me back to square one. Thank you for reading and I would appreciate any advice, thank you so much.
  22. Hi again, dear world. This is my second blog post. In the meanwhile I have had a really busy time testing new theories about my undiagnosed disease. Here is what has happened: In the end of November I visited my GP, and got a referral to visit a gastroentrologist in February. At that time I was so sure that I had Hashimoto thyroiditis, and two months of waiting seemed a long time, especially because I was so sure that this horrible brain fog could be maganged with a simple hormone intake. Why I was so certain I had Hashimoto was because I had had some mysterious days when all my brain fog and tiredness went away, this could last for 6-20 hours. Within that time I could eat whatever I wanted (although I haven't risked trying gluten) however much I wanted without starting of symptoms (normally every food has it's max allowed quantity and following long recovery period). And I had this unfillable hunger, was over-energetic, and often I couldn't sleep for the whole night. Resembles HYPO->hyper->HYPOthyroidism, where the hyper period happens rarely (year 2014 only 5 times total). For many months I'd tried to induce these hyper-periods, but with very little succes. I noticed that if they happened, then usually right after my body had gone through some kind of stress. Drinking 1l milk, 300g honey. Then riding a bike for 2 hours, feel really bad. Then eating rice, my heartrate goes to 90 (higher than usual when digesting), and got brain fog and tiredness. And then, after 2 hours, voila, I get 16 hours of clear mind and unsatisfiable hunger. Drinking 1l milk. Then right away running very fast for 45 minutes. Then rest for 2 hours, then eat buckwheat flour. Again, 90 ppm. And voila - 14 hours of energeticness. Drinking 1l yoghurt. 4 hours of foggyness. Then 6 hours of hunger and brightness. Did an experiment - eat 500 grams of the same rice withing these 6 hours. Nothing happened (normally I get more disturbing brain fog after eating 200g). 200g cocoa powder, following really foggy evening-night, then the next day - very little fog, energetic. Sometimes it also happens when I have diarrhea. And always after having fever. Sometimes also for a shorter period after feeling very tired after eating, then taking a nap, and the following meal is fog free. So you see, it would seem like sometimes the stressful events cause some kind of fever-like reaction, that first feels very bad, but then especially good (like the disease has been fought off with great struggle). Stressful event presses the deteriorated thyroid to do its job in an emergency situation (bad feeling), and then with a last struggle it releases an exceptionally big amount of hormones (following over-energetic feeling). Plus: I also have painless/feverless throat inflammation (at least 3 years). Due to lack of fever/pain and the time it has been stayed (completely unchanged) it can't be viral/bacterial. My throat feels tight Seldomly there is radiating pain around thorat (in throat, cheek and ear regions) No knee-jerk reflex (symptom of 1.hypothyroidism / 2.anemia / 3.spinal cord dysfunction) So, yesterday I gave a blood test, checked for TPO antibodies, TSH, T3, and T4 levels. All were in very normal range, meaning NOT thyroid problem. I really had hoped for 2 months that this test would finally reveal what's wrong with me, but again, disappointment. Later I did some background research and I found out that none of my 4 brothers-sisters and also my both parents had no knee-reflex, thus it is hereditary (and probably harmless). And my mother also has throat inflammation (pharyngitis), and she doesn't have hypothyroidism. Mysteriously each symptom my mother has fits into hypothyroidism profile (and she has ~80% of those symptoms) but the tests show negative, so I hope if I finally get diagnosed it will also shed light to her mysterious case. In the meanwhile I also tested all vitamins+most of (bio)minerals that there exists (figured if I have a celiac then vitamin deficiency may cause some symptoms). At first it seemed some of them worked (B6, B9, D, and Cr), but later experiments proved me wrong, again! Then i figured I haven't tried HCl (low stomach acid + SIBO would explain the immune reaction I get - undigested food enters bowels, immune system doesn't like it and attacks). Again, in the beginning it seemed to help a litlle bit, but later when I took 15x larger amounts (7.5mg Betaine HCl), it made a very little difference. And when I think about it, it doesn't affect my digestion even when I drink like 1l of water right after having a meal, so it really can't be HCl deficiency. (Stevie and Jordan say it also has to have pepsin in it, mine didn't have. But I really doubt it would make any difference in my case, because pepsin can't function in low-acid/watery environment.) Fortunately I did discover one thing that helps me a bit - caffeine. When I tried black coffee it a while ago, then it induced a horrible fog. Little less worse with different teas. But now I got a Herbalife tea, that has some kind of raw coffee and tea powder in it, and it works much better - it actually helps me digest. So, I purchased caffeine pills, and it confirmed my results. Unfortunately they have quite strong side effects - mild diarrhea, urination pain, stomach gases and little pain in stomach. I will try to find some other raw coffee pulber that would not have these side effects. What the effect could be from: Caffeine reduces inflammation and innate immunity. Maybe it reduces inflammation in my stomach and tells my immune system not to develop a reaction to the foods I eat often. Differentials: Caffeine activates blood flow + stimulates nervous system. Maybe the nervous system/muscles in my bowel isn't active enough (don't get enough blood), actually the nonfunctioning nerve-gut axis is linked to Irritable Bowel Syndrome. Studies have also showed that caffeine stimulates thyroid. - Now ruled out in my case. So, I'm waiting my first appointment with a new gastroenterologist in February (last one was 5 years ago). I will tell her everything I have tried in these 5 years, it will rule out a lot of conditions. And this time I won't let myself be diagnosed with "Irritable Bowel Syndrome" without doing colonoscopy and possibly endoscopy to rule out Inflammatory Bowel Diseases or non-healing bowel damage from celiac disease. I am going to defeat this disease, and when I do, I will do everything to help science eradicate the incurable diseases/better diagnose them and give people choices they have no control over.
  23. Does anyone have any recent information from AbbVie regarding their Synthroid .112 or .125 and whether they will say they are gluten-free? I cannot find anything definitive so far and am waiting to hear back from AbbVie. Unfortunately I'm pretty sure I can predict almost word for word what the reply will be, as so many of you already know ("blah blah blah")... I have read about some concern for the red 27 and red 40 in the pink pills, but am not positive if they contain gluten or not. Thanks much!
  24. (Here is my Celiac Blood Panel results to see them - it might help shed some light on things.) Hey, everyone! I'm back. And, I have new things to ask. I think I have Thyroid problems. And, I'm also still eating gluten regularly to make sure I keep up on it just in case my G.I doctor which I'm still waiting to get refereed to does decide to do the endoscopy and biopsy. But, right now within the past few days I feel horrible - miserable even. I feel like lava (really warm) which isn't fun.... Anyways, my suspected non-Celiac symptoms are Increased sensitivity to cold Dry skin Puffy face Muscle weakness Muscle aches, tenderness and stiffness Thinning hair My grandmother also had thyroid problems which makes me suspect that I have them since they were passed down. And, I have low hormones and my overall IgA is low. My neck feels a little painful&puffy recently plus a little lump possibly, too. Can anyone help?? Thank you!
  25. Diagnosed Celiac by biopsy 1.5 years ago. After diagnosis & gluten free diet my body started to go haywire. Everyone chalked it up to my gut was healing, and that it was a good sign. Just wait it out they said. It will get better they said... Then things didnt get better. Everything has persisted, and some things have gotten worse. Symptoms: Weight gain (going from 140lbs to 170lbs. 31 year old female, 5'10") Controlled diet, under 1300 calories a day. Active city dweller without a car. Walk 10-15km/day. Minimal processed foods. No cross contamination (believe me, I know, I will vomit profusely with a spec of gluten.) Swelling of hands and feet (and sometimes face) Extreme lethargy, especially in the legs (having trouble going up stairs & lifting feet) Acne Ridges on my nails Anxiety (which fluctuates) Perodic night sweats I have persisted with my doctors, and was told last week that my thyroid levels were within the normal range, and that the only thing they could do to help me was put me on antidepressants if I wanted. I obviously dont want antidepressants as I dont think I'm depressed. I have a big problem voicing myself in doctors appointments, and often will end up in tears. I dont think thats helping them take me seriously. I feel overwhelmed. I am at the end of my rope right now. The only other tests they scheduled me for are a heart echo and a lung xray (they wanted to make sure my lethargy/shortless of breath wasnt heart/lung related.) I had previously had IV iron infusions, and I get a monthly B12 shot.They say my iron is good enough right now. My doctors do not tell me any of my test info or levels. So I have no idea what they are. It took them 3 years to diagnose me Celiac as my only symptoms prior to diagnosis were malnutrition and anemia. Has anyone ever experienced anything like this? Any suggestions on how to get them to take me seriously? Everything I google comes up thyroid.
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