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  1. I am currently searching for a Doctor that can help me monitor multiple health issues. I have Celiac Disease, Hashimoto Thyroid, Vitiligo, and Pernicious Anemia. I am looking for Tri Cities, WA, Walla Walla WA, or Spokane, WA. I need someone who understands the complications each of the diseases can have themselves as well as the potential combination of issues. Someone who will monitor my bloodworm etc. but can think in gray, not just black and white. I take Levothyroxine and have had monthly B12 injections for about 16. I take Vitamin D supplements to keep the level up. I take numerous other supplements and have been on a strict gluten-free diet for 41/2 years. I do have other food allergies too. I do not absorb Iron well at all and have had a Hematologist monitor my Ferritin etc. It began about 6 years ago. I was having trouble with a constant dry cough and was sent to a Pulmonologist, who determined I was not getting enough oxygen to my lungs. My PCP did a lot of blood work and found I had a Ferritin level of basically 0 and Hemoglobin of 5.5. Tried mega Iron supplements with no change in level. The doctor told me to throw them away and had me begin Iron Infusions She helped me get it leveled out after a few years and now I don't need them as often. The Hematologist was the one who suspected Celiac Disease and sent me to be tested. (Please note I had been scoped up and down numerous times, swallowed a camera and still the Gastro could not find anything wrong. Never did a biopsy. He attributed my issues to IBS....) About a year ago my most excellent Hematologist left the practice and moved far away. She was very intelligent, keen, and thought outside the box in many ways. I could count on her to test, evaluate and analyze my bloodwork. She was an excellent communicator and would research for additional information. It is difficult to explain how comfortable I was with her managing my care. I no longer feel that way and for the last year my Ferritin has been between 8 and 10.8 and the Saturation has been hovering around or below the low level. And I have not had any infusions. Thank you!
  2. I was diagnosed with Severe Celiacs last November plus 2 forms of glaucoma and recently degenerative arthritis. I'm only 22 and finding all this out is exhausting and stressful, well recently I decided to take a break from the gluten free diet and ordered a stuffed crust pizza from pizza hut, a few things from taco bell and a buffet at golden corral! And I have not gotten sick! Maybe I rash but the rash was there before hand, now I'm concerned my doctor was wrong and misdiagnosed me somehow? Before I started the gluten diet I was severely sick, throwing up and couldn't eat, I thought I had cancer, can someone help idk who else to go to, is this normal? Getting sick and then not getting sick? Oh and the rash has been there for weeks doctor has no idea what it is gonna see specialist, auto immune diseases are in family, I did have pelvic inflammatory disease could that of caused something?
  3. Celiac.com 06/25/2018 - The latest studies show that celiac disease now affects 1.2% of the population. That’s millions, even tens of millions of people with celiac disease worldwide. The vast majority of these people remain undiagnosed. Many of these people have no clear symptoms. Moreover, even when they do have symptoms, very often those symptoms are atypical, vague, and hard to pin on celiac disease. Here are three ways that you can help your healthcare professionals spot celiac disease, and help to keep celiacs gluten-free: 1) Your regular doctor can help spot celiac disease, even if the symptoms are vague and atypical. Does your doctor know that anemia is one of the most common features of celiac disease? How about neuropathy, another common feature in celiac disease? Do they know that most people diagnosed with celiac disease these days have either no symptoms, or present atypical symptoms that can make diagnosis that much harder? Do they know that a simple blood test or two can provide strong evidence for celiac disease? People who are newly diagnosed with celiac disease are often deficient in calcium, fiber, folate, iron, magnesium, niacin, riboflavin, vitamin B12, vitamin D, and zinc. Deficiencies in copper and vitamin B6 are less common, but still possible. Also, celiac disease is a strong suspect in many patients with unexplained nutritional anemia. Being aware of these vague, confusing symptoms of celiac disease can help people get bette advice, and hopefully speed up a diagnosis. 2) Your dentist can help spot celiac disease Does your dentist realize that dental enamel defects could point to celiac disease? Studies show that dental enamel defects can be a strong indicator of adult celiac disease, even in the absence of physical symptoms. By pointing out dental enamel defects that indicate celiac disease, dentists can play an important role in diagnosing celiac disease. 3) Your pharmacist can help keep you gluten-free Does your pharmacist know which medicines and drugs are gluten-free, and which might contain traces of gluten? Pharmacists can be powerful advocates for patients with celiac disease. They can check ingredients on prescription medications, educate patients to help them make safer choices, and even speak with drug manufacturers on patients’ behalf. Pharmacists can also help with information on the ingredients used to manufacture various vitamins and supplements that might contain wheat. Understanding the many vague, confusing symptoms of celiac disease, and the ways in which various types of health professionals can help, is a powerful tool for helping to diagnose celiac disease, and for managing it in the future. If you are suffering from one or more of these symptoms, and suspect celiac disease, be sure to gather as much information as you can, and to check in with your health professionals as quickly as possible.
  4. I was diagnosed with celiac in January, by my gastroenterologist. After asking him various questions, I am not confident in his familiarity with celiac disease and am looking for a "celiac specialist". I am in North Carolina in the Raleigh- Durham area. If anyone has any suggestions or recommendations, that would be fantastic.
  5. Hello, I am a 22 year old female - normal weight and height. When I was 20 years old I started waking up with a swollen lip, or swollen face - to the point where I was no longer recognizable. Sometimes both lips swell and I literally look like plastic surgery or injections gone wrong. Doctors couldn't find anything and allergist came up with nothing. I went to the naturopath and they tested my sensitivities and told me to cut out a long list of foods including gluten. I cut out all foods and started bringing them back in except for gluten. I went gluten free for about a year and I had only swelled up once while I was gluten-free. (before this diet I was swelling up 2-3 times a month). I am a student and when the reactions happened I couldn't leave the house, but I am beginning a job in January and I cannot be taking off work for these random episodes Sometimes I have swelling in the ball of my foot and it gets VERY ITCHY and hot. A few times I had swelling in my wrist and the next day when the swelling went away, my wrist was still very sore. Other nights I wake up and my throat feels like it is swelling and I have a hard time breathing. I started eating gluten again here and there. A beer here and there, a burrito from time to time, and I have had no swelling - but today for the first time I had real pizza and my foot is swelling and I feel my face about to swell. NOTHING helps the swelling go down other than just time. No allergy pills help. My doctor told me to take allergy pills every night for the rest of my life basically. I don't have any digestion issues or other pain so I am not sure what I have or what is going on. My doctor also doesn't want to test for celiac, as too many times it comes back as a false positive....... Has anyone else had these symptoms or heard of them?? Any advice will help! Thanks!
  6. Celiac diagnosis was 6 years ago. Feel great now. This week, I was getting a routine colonoscopy and received a prescription for a powdered medicine called Prepopik to ahem, clean the intestines out. I have been glutened by powdered mixes before so I realized I should check the ingredients as a precaution. No gluten-free labeling and a vague, tiny disclaimer about "allergies to additives". Googled but came up short. Finally called the manufacturer, Ferring. Turns out cranberry-flavored Prepopik has gluten but orange-flavored is gluten-free! I had cranberry ready to drink in my hand! Close call. I barf for a day if I have gluten so under anesthesia for the colonoscopy, I would have been dry-heaving and at risk for aspirating. Argh. Want to warn everyone about cranberry-flavored Prepopik! Who knew? My now-fired GI's office had never heard of it. (They seem to deal with elderly, very ill people who are too sick to google.) Now I'm wondering if this has caused major complications for someone out there! Never let your guard down about gluten. Even if the guy who diagnosed you with Celiac is prescribing you something. Good luck!
  7. Brand new here. I'm searching for all the help I can get, and, well... I figure you all are "experts" I have suspected for Years that my daughter is Gluten sensitive or allergic (and my husband as well, and my MIL because my daughter is SO much like her). The doctor I approached on the subject said to put her on a gluten free diet and if she does better, then I'll know. I want to have her tested before we go gluten-free, but I don't know how to ask for that (we've moved to a whole new state, so new drs) Her symptoms that make me suspicious are: Eczema that appeared at 2m old (but went away) and Dermatitis herperiformis that is very mild, toddler tummy that never went away, and off and on complaints of pain in her legs and feet; pain so bad she doesn't want to walk. She has been complaining for a couple days, so that is what has led me here. Granted, she is my fastest growing child... she's 7 and is now taller than her petite 9yr old sister (my mother in law was a tall woman, and so is my father so genes are at play), but the extra fat she carries (born with) I suspect has to do with gluten. My husband I suspect as well because he has (for as long as I've known him) body wide acne, became lactose intolerant (gas, cramps, diarrhea), and occasionally other foods will set off the irritated bowel type symptoms as well. He also gets psoriasis rash on his face and scalp. I wonder at times if gluten is the culprit for his mental health and sleep issues as well. Need to get him tested as well. We are on an extremely tight budget, and all the work needed to provide gluten free meals seems like a very daunting task. I'm quite overwhelmed by it, and it Really doesn't help that my family, Especially my husband, is stuck on the processed foods that taste "better". So with all that... Any advice would be helpful.... am I on the right track with these symptoms? Questions welcome. p.s. My mother was diagnosed by small intestinal biopsy, to have "the start of celiac damage" so she has been eating gluten-free since July. She pays for it dearly every time she consumes G now, with major gas, and cramps, etc. Unfortunately she is allergic to soy and has found that Quinoa makes her lips burn and swell so that's out the window. I too have begun reacting to soy with blisters and throat tightness, so changes are in store for me too.
  8. I live near Denver, near the foothills and I'm looking for a Doctor that either specializes in Celiac or has the disease him or herself. That would be amazing. I have seen 3 different doctors who all sympathize and kind of understand the list of it, but by no means are fully understanding of this. I feel like I'm always telling them why I can't just take any medicine, or do this or that, or why I can't work in a bakery...this all stems from me having to do a lot of disability paperwork and never, ever having it filled out correctly. I was denied multiple times because of ignorance. I would really appreciate any help.
  9. Celiac.com 12/05/2016 - Symptomatic suspected gluten exposure is common among patients with celiac disease on a gluten-free diet. A gluten-free diet is the only recommended treatment for celiac disease. Although anecdotal evidence suggests that suspected gluten exposure is common among celiac patients following a gluten-free diet, there is not a great deal of hard data to support that view. A team of researchers recently set out to assess the prevalence and characteristics of gluten reactions in people with celiac disease on a gluten-free diet. The research team included JA Silvester, LA Graff, L Rigaux, JR Walker, and DR Duerksen. They are variously affiliated with the St Boniface Hospital in Winnipeg, Canada, the College of Medicine at the University of Manitoba in Winnipeg, Canada, and with the Celiac Research Program at Harvard Medical School in Boston, MA, USA. Their team prospectively enrolled adults with biopsy proven, newly diagnosed celiac disease. They then conducted a survey related to diet adherence and reactions to gluten, both at study entry and at 6 months. To measure celiac disease symptoms and gluten-free diet adherence, they used T Celiac Symptom Index, Celiac Diet Assessment Tool (CDAT) and Gluten-Free Eating Assessment Tool (gluten-free-EAT). Of the 105 patients enrolled, 91% reported gluten exposure less than once per month, while the average CDAT score was 9 (IQR 8-11), which suggests good dietary adherence. Two out of three patients reported suspected symptomatic reaction to gluten. Most, 63 percent, did not suspect gluten consumption until a reaction occurred. Meanwhile, just under one-third (29 percent) reported that problems happened when ordering in a restaurant. Thirty percent of patients say that gluten was consumed from incidental contact, while 10 percent said it was due to eating a major gluten ingredient. Average time to symptom onset was 1 hour, though onset ranged from 10 minutes to 2 days. Symptoms lasted about 24 hours on average, and ranged from 1 hour to 8 days. Symptoms typically included abdominal pain (80%), diarrhea (52%), fatigue (33%), headache (30%) and irritability (29%). Even with good dietary compliance, most celiac patients following a gluten-free diet suffer from regular adverse reactions to gluten. Eating away from home continues to pose the major risks for accidental gluten exposure. The team recommends that physicians treating celiac disease patients should include regular questions regarding gluten reactions as part of their assessment of gluten-free diet adherence. Source: Aliment Pharmacol Ther. 2016 Sep;44(6):612-9. doi: 10.1111/apt.13725. Epub 2016 Jul 22.
  10. GI Appt tomorrow; anything that I should know or keep in mind? Background Info: Summer 2015: Extremely dry, flaky skin and scalp leading to dandruff. Lotion, vaseline, steroidal medications did pretty much nothing. Visited derm and all they prescribed me was dandruff shampoos (?). March 2016: Possibly DH, red, blistery and symmetrically patterned rashes that itched until they bled. Also had dry and creased skin in those areas. April-May 2016: Gluten-free diet for ~3 weeks, no change in skin conditions. Went back on gluten, noticed changes in stool (i.e. diarrhea, yellowish colour). When eliminating gluten again (after ~3 weeks off gluten), stools normalized. After prolonged gluten-free (4-6 weeks), skin went back to producing oil, scalp also started to produce oil and dandruff disappeared. When reintroducing gluten for ~3 weeks, change in digestive symptoms but not much in skin (rash came and went whenever it wanted). After a long period of time eating gluten, hair stopped producing oil (bad dandruff again) and skin became dry again. May 2016: Visited other derm for DH, said it was only eczema and gave me many steroidal creams. Didn't work for long term. June-November 2016: Back on gluten because I wanted to get tested. August 2016: New PC doctor, took symptoms seriously and suspected DH, celiac. Did blood tests for possible liver problems, thyroid to make sure. Referred to GI when came back negative ( except for borderline hypothyroid) November 25, 2016: Going to GI to get a consult. I have been on gluten since beginning of June. Note that I have been eating gluten, but not as much as I should have - slice of bread here and there, but my habits on the gluten-free diet have lead to me eating less gluten and therefore not showing as much symptoms. My rash that my PC suspected was DH has mainly gone away, because of this, but it's still here. What should I keep in mind to say to my GI? Their office says they cannot do a endoscopy right away because I'm under 18 currently (but turn of age next spring).
  11. Celiac.com 11/21/2016 - Even early on, strange inconsistencies caused Dan and Davina Dixon to wonder about her daughter, Rebecca. With dark hair and olive skin, Rebecca looked visibly different from her fair-complected parents. She looked different enough to wonder, as a child, if was adopted, if Dan and Davina were really her biological parents, as they assured her they were. Later, in her twenties, Rebecca developed celiac disease, which usually runs in families, even though no one else in their extended family suffered from it. Most of this was merely fodder for curiosity, until the day Davina saw a Facebook post that mentioned how rare it is for parents with blue eyes to have a child with brown eyes. Wondering about Rebecca's brown eyes, Davina went to the family doctor, who suggested a blood test. That's when the real mystery began: The blood test revealed that Rebecca's dad, Dan, was not, in fact, her biological father. There was absolutely no doubt. Dan's blood type was AB, while Rebecca's was O-Positive. That makes it impossible for Dan to be her father. A paternity test followed, and confirmed the blood results. There was simply no chance that Dan was Rebecca's biological father. Naturally, the Dixons began to search for answers. As reported by Kidspot, Rebecca was raised believing that Dan and Davina were her biological parents. The couple had tried for years to conceive a child. Unsuccessful, they turned to Dr. Norman Barwin, a gynecologist and fertility expert known by many as Canada's "baby god." The couple wondered whether there could have been some sort of mix-up in Barwin's office. Eventually, they noticed Rebecca bore a striking resemblance to Dr. Barwin, himself. Soon after that, as CTV News reported, a woman conceived at the same clinic learned that she was genetically related to Barwin. A DNA test confirmed that Rebecca and the woman were half-sisters, and their father was Dr. Barwin. Apparently, Barwin's role as a sperm donor to his own medical practice was kept secret from both sets of parents. The Dixon family is now suing Dr. Barwin for negligence and breach of trust. The lawsuit requests that Barwin turn over a DNA sample, to determine if any other children conceived at his clinic are his offspring, and to notify them accordingly. Read more at: Kidspot.com CTV News IJR.com
  12. Celiac.com 09/20/2016 - A surprising research report from Australia that explores non celiac gluten sensitivity (1) has given rise to a number of journalistic offerings that range between offensive and downright silly, while the reporters who wrote them appear to have somewhat compromised reading skills (3, 4). That is not to say that the research report is without problems. However, at least that report requires a close reading to identify its most troubling elements (1). Specifically, it suggests that patients who claim to feel better on a gluten free diet are either deluded or confused. The research implies that these patients may actually feel better because they have reduced their consumption of the starch in the gluten grains they are avoiding. That doesn't qualify as justification for either "fake" or "b$#@@#$$" (2, 3) as stated in the titles of the above journalistic offerings. The central thrust of the research report is that their investigations showed no evidence of benefits for patients who follow a gluten free diet due to the patients' belief that they are sensitive to gluten. These researchers could have said something indicating that a low FODMAPs diet might work better to help the person with NCGS [non celiac gluten sensitivity], as it not only eliminates gluten, but it also eliminates the associated starches, and a host of other sugars and starches that may also be contributing to their digestive symptoms. But they didn't. They said, instead, that they found ".....no evidence of specific or dose-dependent effects of gluten in patients with NCGS placed on a low FODMAPs diet" (1). First, let's be clear about what the acronym FODMAP means. It stands for fermentable, oligosaccharides, disaccharides, monosaccharides, and polyols. They are groups of sugars and starches that can induce or exacerbate gastrointestinal symptoms. But most of the gluten grains are made up of such starches (which are quickly turned to sugar as soon as we ingest them). The protein content is relatively small. Flours made from all forms of wheat and rye are high in FODMAPs (4). These people were not masquerading as having celiac disease. Neither were they trying to mislead anyone. They simply found that they feel better when avoiding gluten grains. So why the profanity and accusations embedded in the headlines of these articles (2, 3)? Avoidance of these foods will often help those with digestive problems. But this can happen for a variety of reasons. For instance, in a person with lactose intolerance, that individual has stopped or reduced production of the brush border enzymes (lactase) that are needed to break apart the two constituent sugars that form lactose (galactose and glucose) the sugar found in milk. The lactose molecule, a disaccharide (di = two and saccharide = sugar) is too large to be absorbed through the cells (enterocytes) that line the intestinal wall, and then into the bloodstream. While humans may not be able to digest these larger molecules of lactose, many of the bacteria that live in our intestines do so with little problem. These microscopic residents of our GI tracts multiply rapidly in the presence of so much available food. The enormous and growing numbers of these microbes, combined with their rapid digestion of lactose, produces considerable quantities of methane gas. The resulting symptoms we experience include gut pain, flatulence, smelly stools, and diarrhea. The low FODMAP diet excludes or limits oligosaccharides (from 3 to 6 units of simple sugars) disaccharides, and monosaccharides. It also excludes sugar alcohols and fermentable foods which can produce acids, gases and/or alcohols. Thus, only the gluten family of proteins should have been used to "challenge" the research subjects in this study (1) that is causing all the fuss. But that wasn't done. As may be very quickly ascertained from the interview with Sachin Rustgi, in the spring issue of this journal, there are many structural variations in each of the families of glutens and in specific gluten structures of each strain of each of the gluten-containing grains (5). In fact, Biesiekierski et al openly acknowledge that they purchased the refined gluten they used in their study from a different supplier than was used in a previous study, conducted by some of the same researchers, that confirmed the presence of non celiac gluten sensitivity (6). The later study used a form of gluten that may not have diverged much from the original, as the research group was able to state that the glutens from both studies were similar. However, they also acknowledged that they did not characterize the other, non-gluten components of the gluten they used, either. Thus, there are two possible confounding factors just in the gluten component used in this study. Small differences in the gluten protein structures may have been sufficient to cause the dramatically different result, or some added or missing non-gluten component of the gluten purchased may have caused the different result. We have no way of telling if, or to what extent, either of these factors may have played in the different findings. Without more careful work, neither could the Biesiekierski et al research group (1). It is not news to many of us who are gluten sensitive that differing families of gluten can produce differing symptoms and will sometimes elicit no symptoms at all. Some of us, including those with celiac disease, also react to corn and/or rice glutens, despite very clear medical statements that this is not part of our gluten-induced disease. So some of us have a more generalized reaction to gluten, while others are reacting only to sub-groups of gluten. Still others may cross react with similar proteins from other foods. Yet I can't help but believe that when such foods cause virtually identical digestive symptoms, there is some kind of connection to our problem with digesting and metabolizing gluten. Narrow medical definitions notwithstanding, each individual who struggles with this digestive issue must find her or his best answers through trial and error. Rigid journalists who genuflect at the altar of allopathic medicine will be unable to help us navigate this hazardous swamp. Neither will researchers with pre-conceived notions, who try to conduct dietary studies in a manner developed for pharmaceutical trials. For instance, Sachin Rustgi acknowledged that some biopsy-diagnosed celiacs will not react to a given strain of gluten grains while others with celiac disease will mount an immune reaction against the same strain (5). So each of us may be sensitized to different short strings of amino acids that form part of one or more of the family of gluten proteins or one or more of its sub-groups. This is wholly congruent with the science that explains and depicts selective antibody formation and activation. And that is only one part of the complexity here. Research that tries to formulate a strain of wheat that will not trigger gluten-induced illnesses must eliminate all sensitizing agents that each person with celiac disease may respond to with selective antibody production, while trying to retain the characteristics that produce the desired taste, smell, and nutrient content. Also, few of us with gluten issues need to be told that other foods can cause us to experience similar symptoms, or exacerbate, or vary, our symptoms. It can sometimes be a very confusing quagmire where it is difficult to identify the source of our symptoms. Further, Biesiekierski and colleagues overtly acknowledge that their focus on fatigue might have produced better insight into NCGS by revealing "why those who follow a GFD feel better" if they had asked their question differently (1). They also acknowledge the possibilities that gluten may only cause symptoms in combination with FODMAPs, or that FODMAPs cause gut problems which result in a gluten-induced loss of a sense of wellness. Their comments in this regard commendably reflect a willingness to look beyond the surface in this matter. I would go further, based on Scott Adams' interview of Sachin Rustgi (5) and assert that not all genetic strains of wheat gluten will elicit symptoms of celiac disease in a given individual with biopsy-proven celiac disease, never mind those with NCGS. So the researchers' failure to account for patient-to-patient variability, as is seen in celiac disease, along with specific wording of questions about symptoms are yet two more confounding factors in this study. Perhaps a mixture of several forms of gluten, bereft of contaminants, would have been a better choice for Biesiekierski's group. And other precautions in formulating their questions might have been useful. But there are many more problems with this report. Extensive Review by Expert Panel Dr. Carlo Catassi and a large group of widely recognized celiac experts published a comprehensive review of the medical literature on the topic of non-celiac gluten sensitivity in September of last year. Therein, they state that: " Lack of biomarkers is still a major limitation of clinical studies, making it difficult to differentiate NCGS from other gluten related disorders" (7). Conversely, the Australian group led by Biesiekierski, asserts in their report which was published the previous month, that "Generally, NCGS is viewed as a defined illness, much like celiac disease, where gluten is the cause and trigger for symptoms" (6). At least one of these groups is confused about whether or not non celiac gluten sensitivity is well defined and well understood. As a student of this literature myself, I would assert that the consensus view is that this form of gluten sensitivity is far from being either well defined or well understood. In fact, there is still a great deal that is not understood even about celiac disease. Non celiac gluten sensitivity has only recently begun to be widely recognized in circles of gastrointestinal researchers. Further, the Biesiekierski group's extensive use of celiac-related antibody tests appears to ignore the widely held view that biomarkers are one of the great impediments to understanding non celiac gluten sensitivity. I would also add that while I have often argued for the use of IgG class anti-gliadin antibodies as a marker of many cases gluten sensitivity (also see Jean Duane's article in this issue) with or without symptoms, I have also maintained that there are many cases in which these antibodies are not found, yet the patient will frequently benefit from removal of gluten from her/his diet. A further weakness of the Biesiekierski et al study is that each of the intervals during which the low FODMAP diet (2 weeks), the gluten-containing diet at 16 grams/day (for 1 week), the low gluten diet at 2 grams /day (for 1 week), and the whey-containing diet 16 grams/day ( for 1 week) all ran for periods of time that were just too short to produce measurable serological findings in people with celiac disease. Even the washout period of 2 weeks was a minimal duration. Also, the three days allotted for the re-challenge trial was certainly too brief to produce meaningful results. Some celiac disease researchers report that only about 50% of their research subjects, all of whom had biopsy diagnosed celiac disease, produced celiac-associated antibodies after a two week challenge: "Antibody titres increased slightly from baseline to day 14 of GC [gluten challenge] but markedly by day 28" (8). This puts the one week duration of the Biesiekierski study into perspective - it is a choice that may have been directed at a specific research result. By day 28 of the Leffler et al study, 75% of the celiac patients showed markedly increased celiac associated antibodies. Thus, a single week of gluten challenge, as was used in the Biesiekierski et al study would be unlikely to produce any measureable changes in serum antibodies, even among people with celiac disease, who should reasonably be expected to react most quickly and strongly to gluten ingestion. Those with biopsy diagnosed celiac disease form the group that is currently thought to mount a much more serious and vigorous immune reaction to gluten than that seen in those with non celiac gluten sensitivity. While I do not necessarily agree with that perspective, it is wholly unreasonable to expect a reaction from a group of NCGS patients in one quarter of the time it is seen in only 75% of celiac patients. This Leffler et al study (8) also indicates that these celiac patients were reporting symptoms within three days of beginning the gluten challenge. Thus, it seems especially surprising that self-diagnosed gluten sensitivity would be such a contentious issue that would incite such rancorous responses as those mentioned earlier (2, 3). Because NCGS is not well characterized or understood, allowing only one week for gluten ingestion to cause symptoms, if that is our only measurement of gluten's impact on their health, might work with about three quarters of celiac patients, if antibodies are measured after 28 days, but how can anyone say that it is appropriate for NCGS? Further, the use of tests, especially serological antibodies, takes the focus off of symptoms and undermines the patients' reports of symptoms, suggesting that their claims of gluten sensitivity are either misguided or duplicitous. Meanwhile, the ~25% of those with biopsy diagnosed celiac disease had not yet produced celiac associated serum antibodies, even after four weeks of gluten challenge. We do not need physicians to tell us how we feel. While most of the limitations to the Biesiekierski et al study were actually mentioned in their report, those journalists who formulated articles and inflammatory titles that included the terms "fake" (2) and "b$#@@#$$" (3) seem to have missed reading those parts of this report. Further, they took such statements as "These data suggest that NCGS, as currently defined, might not be a discrete entity or that this entity might be confounded by FODMAP restriction" to mean that there is no such thing as NCGS. However, those of us with reading skills above the middle-school level will recognize that Biesiekierski and colleagues qualified their statement in several important ways, suggesting that FODMAP restriction could be a confounding variable or that the current definition of NCGS may need to be adjusted, or the possibility that the gluten they used may not have been appropriate. One must wonder whether these journalists are that challenged when it comes to reading? Or are they trying to raise readership? Perhaps their ads sell according to how many hits and responses their websites garner. Thus, it may make sense to offend groups that are likely to post responses to their site, as a strategy aimed at raising their advertising revenue. I can't see what other limitation or motivation there might be to so dramatize these research findings with little regard for what the researchers actually said. On another level, I hope that the field of Journalism has not become so crass that they don't bother to exercise even a modicum of critical thought when reading reports of research results. That, after all, is their function in democratic societies. They are supposed to offer insightful commentaries on current trends in politics, science, education, law enforcement, and various other facets of our democratic cultures. It is difficult to find thoughtfulness or insight in the terms "fake" and "b$#@@#$$". It is also difficult to see such reports being published when a retrospective study I was involved in remains unpublished. Perhaps that is due to the finding that the gluten free diet had a very positive impact on the behavior and scholastic performance of many children. The gluten sensitive community has come a long way, but many biased journalists, physicians, and researchers continue to resist the notion that gluten is a food that harms many people. Sources: Biesiekierski JR, Peters SL, Newnham ED, Rosella O, Muir JG, Gibson PR. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology. 2013 Aug;145(2):320-8.e1-3. https://ca.shine.yahoo.com/gluten-intolerance-is-fake-093131285.html http://kitchenette.jezebel.com/gluten-sensitivity-is-apparently-b$#@@#$$-1577905069 http://stanfordhospital.org/digestivehealth/nutrition/DH-Low-FODMAP-Diet-Handout.pdf Adams S. Discussion with Assistant Resident Research Professor Sachin Rustgi on the Genetic Modification of Wheat to Make it Safe for Celiacs. Jrnl Glut Sens. 2014. Spring; 13 (2): 11-13. Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD,Shepherd SJ, Muir JG, Gibson PR. Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol. 2011 Mar;106(3):508-514. Catassi C, Bai JC, Bonaz B, Bouma G, Calabrò A, Carroccio A, Castillejo G, Ciacci C, Cristofori F, Dolinsek J, Francavilla R, Elli L, Green P, Holtmeier W, Koehler P, Koletzko S, Meinhold C, Sanders D, Schumann M, Schuppan D, Ullrich R, Vécsei A, Volta U, Zevallos V, Sapone A, Fasano A. Non-Celiac Gluten sensitivity: the new frontier of gluten related disorders. Nutrients. 2013 Sep 26;5(10):3839-53. Leffler D, et al. (2013) Kinetics of the histological, serological and symptomatic responses to gluten challenge in adults with coeliac disease. Gut 62(7):996–1004.
  13. So I am sixteen, and for the past year or so I have been experiencing some very strange things with my body. (And yes I know i'm going through puberty and change is normal.) But the things I have been experiencing are not just the typical growing up things. I have had a consistent rash on my upper back, chest and thighs, (also having major breakouts on my back and minimal on my chest. I assumed it was just acne although it is itchy which I don't think is normal for just pimples...) And a few weeks ago i was kind of freaking out because when I went to the bathroom, I had almost like a fatty liquid with my stool! (Which lasted for a couple of weeks and still comes back every once in awhile). I always feel very bloated and constipated and I have the WORST pms. I ended up in the emergency room twice from passing out after standing up and feeling dizzy, I stopped growing around age 13 and am by far the shortest in my family. I didn't think that it was related until i was looking up symptoms, (I am 5'2, the rest of my family range from 5'6 to 5'11). I went on a juice cleanse several months ago and felt soooo much better and my skin cleared up, but that only lasted a couple of weeks and since going back to eating regular food containing gluten all of my old symptoms have come back. Should I get tested?
  14. I moved to the Sarasota-Bradenton area 9 months ago and am looking for a doctor who specializes in Celiac Disease. Any suggestions? I was diagnosed with celiac disease 6 years ago and am still having some health issues. If not in Sarasota-Bradenton, are there recommended doctors in St.Petersburg or Tampa for Celiac?
  15. I'm trying to find a decent place to get an endoscopy for celiac -- I had a highly recommended doctor at Kaiser, but am now on Anthem Blue Cross, and an endoscopy is very expensive at UCSF where my GI doctor recommended it. It can be 10,000$ without insurance, would still be $2000 with my great no-deductible EPO plan! Other places seem to be much cheaper (as low as $1000, which would end up costing me $200). But I have no idea if they are reputable and competent at celiac diagnosis (all I have is the the occasional yelp review, usually for a colonoscopy...). Do you have any recommendations? Or know someone who might, who I can private message? I can check to see if they are covered by my insurance. For reference, it's important that the doctors be pretty competent -- my previous endoscopy was negative, but my ttg tests are 4x normal and going up every time I'm tested -- so I want to have confidence that I won't get a false negative!
  16. Hello everyone! I'm back after a year of still no answers. Finally seeing a new group of doctors since I recently got a new job. My new primary doctor thinks I may have celiac and wants me to get another opinion. Going to see the new gastroenterologist next week and I can't wait to go. I'm hoping to finally get some answers to the issues I've been having. Although it will be a huge lifestyle change I think I will be relieved to know that everything I'm feeling just isn't in my head. Doctors are so quick to tell me all of my symptoms are stress-related. Here is a little background about me! May of last year I started realizing I was loosing my eyebrows (Still haven't grown back!!) - initially thought it was my thyroid, all levels were within range though. I'm also not loosing them on the outer corner of my eye but more towards the inner corner (Doesn't really matter I'm sure). Tested my Iron and my ferritin was down to an 8 when in previous years it was around 200 something. No bleeding episodes and my menstrual cycles are light. I started researching hashimoto's and iron deficiency and started seeing stuff about celiac. In the lab I work in I was tested for tTg IgG/IgA, Gliadin IgG/IgA and Total IgA. I was not deficient in IgA and I'm not sure if the testing for gliadin was deaminated or not (don't believe it was). I don't have my exact results for the tTg IgG/IgA or Gliadin IgA but I remember they were within normal limits, but my Gliadin IgG was 3.59IV and a positive was anything greater than of equal to 1.1. I also had the genetic test done and I was negative for HLA-DQB1*02 and HLA-DQB1*03:02 but I was positive for HLA-DQA1*05. I know this isn't diagnostic in itself for celiac disease. I had a endoscopy and the report read as follows: A. Duodenal mucosal biopsies with no significant microscopic abnormality. No diagnostic histology features of celiac are appreciated B. Gastric antral and oxytocin mucosal biopsies showing chronic gastritis. Reactive foveolar hyperplasia is present. H. pylori is negative The material present is partly tangentially sectioned. The villous crypt ratio is about 3.5. There are intraepithelial lymphocytes but they don't seem to be significantly increase in most of the villi. There are inflammatory cells in the lamina propria including plasma cells and lymphocytes with an occasional germinal center. They are normal to slightly increased in number. No histologically diagnostic features of celiac are appreciated. Really hoping this new gastro will shed some light on all of my questions... Trying to eat as much gluten as I can tolerate before going for testing. I previously did not experience any GI symptoms but now I have been experiencing stomach pain (not everytime I ingest gluten but occasionally) The pain comes in waves, the pain builds up then subsides..I'm okay for a little while and then it happens again. Keep your fingers crossed for me!!
  17. I am so glad I found this forum...I just discovered it tonight! I am hoping you all can give me sound advice as to what to do...so, here is my "story": A few years ago (at least 3), I started to have serious skin issues. I broke out head to toe in a rash that was so itchy, I couldn't stop scratching. I went to 5 different doctors to get a diagnosis of dyshidrosis. The "rash" is primarily on my hands, and it is rare that I do not have any sores on my hands. I also tend to break out on the underside of my arms, into my armpits a bit. The other issue I seem to have is constant diarrhea. I get the bloated, gassy, cramping feeling, and at times, don't even think I'm going to make it to a toilet (sorry if this is TMI.) I went to my doctor (PCP) about this too, and he said I have Irritable Bowel Syndrome, and I can take Imodium as needed. So, I live with Imodium in my purse, and at times, don't leave my house. I even wake up with diarrhea lately! So, two weeks ago, my dad insisted that I start on a probiotic. He bought me one with 15B active cultures per tablet. Well, it hasn't helped at all. So today, he started urging me to see another doctor and not to accept the diagnosis of IBS. What do you all think? Reflecting back, the skin issues and digestive issues seem to have started at about the same time, but the stomach has gotten worse. I don't know if I'm vitamin or mineral deficient, although I do know that my body does not absorb folic acid, so I am always deficient. OH, I must edit this to add that I am fatigued ALL THE TIME! I could never take a nap before, now I can sleep at any time of day. Not sure if that makes any difference! Should I be okay with IBS as a diagnosis or should I press further? Please help! I don't just want to jump into going gluten free, as I have 3 kids and a husband and that would be really difficult to do. Thanks for any advice you could give me! Megan
  18. Hi Friends! I have been gluten free for 2+ years but don't have a formal diagnosis because every time I go to the doctor, they want to test for everything else, or imply that maybe this is all in my head and I am so frustrated I could burst. When I eat gluten, I get all the symptoms up to and especially nausea, joint pain, anxiety, muscle weakness, headaches, and brain fog. I've been to a gastroenterologist, and allergist, and my GP, and they all sort of throw up their hands and say they don't know what is causing it. Yes, I have had skin tests for all sorts of allergies, nothing came up. No, I have not had blood tests or biopsies. Symptoms were pretty well controlled on gluten-free diet, but now I seem to be reacting to corn as well and since it is getting worse, I need to see someone. I live in San Francisco. Any suggestions? Thanks!
  19. Can anyone recommend a gastro who understands Celiac disease in my area?
  20. Hello! I'm looking for a GI in NYC that specializes in celiac disease. My GI doesn't have a lot of experience with celiac, and I think I'd benefit from seeing someone who does. Anyone have good recs for a doctor they love? Thanks!
  21. Let me start off by saying thank you to anyone who reads this whole thing...cause it's going to be long. And if no one reads it, maybe it will help me to type it. Because right now I'm angry,sad, frustrated and confused!!! In January, after months of all day diarrhea, headaches, brain fog, pain, I went to see my GP and he had the results of my bloodwork. He said you've tested positive for H. Pylori and Celiac disease. I hugged him. There was an answer to it! I was so weak and tired (the D was 10-20 times a day) I didn't ask questions. He said stop eating gluten and I did. The week before I'd found out that there were polyps all over my gallbladder and that it would need to come out and the week before that there were polyps on my uterus that needed to be removed. I really didn't know anything about celiac. I spent 2 weeks detoxing and then had surgery to have my gallbladder removed and my uterine polyps removed. I recovered from that and then really got into this board and started reading. I kept seeing things about needing a biopsy...but I didn't have one. At this point I was more than a month gluten free and was finally feeling better. I could see improvements in my life and it was such a relief. I knew I didn't want to ever eat gluten again. Yesterday I had an appointment with my doctor again and had some questions for him. Why no biopsy? A lot of people think you need one to have a diagnosis. His response...you don't need a biopsy. I asked about re-running my antibodies to see if my 5 months gluten free was paying off. He said you don't need to do that. It won't show anything. What??? I asked about testing my children. He said you don't normally need to do that until they are at least teenagers. What? I've got one teenager so...He tells me he's going to check the guidelines on testing. He leaves the room. During this time I am freaking out! WTH!!! Am I allowed to type that? So...he's gone for a while. He comes back in and says...well, I'm not sure. I need to talk to a GI. Maybe you should have had a biopsy. I left...devastated. 6 PM...my phone rings. It's my Dr. He talked to a GI. He's very sorry. He learned something today. He should have had my do a biopsy. And he learned that there is a link between celiac and thyroid (I've been hypothyroid for 14 years) and some cancers...just like I told him and he dismissed me with a "I've never heard of that." Now that I've been gluten free for 5 months. I could eat some gluten for a while and then do the biopsy. I told him if I get even a tiny bit I will be sick for a week. Ok, so that's not a good idea. We can do the gene testing. But he will need to check to see how much it is before he sends me for that. Sometimes it's stupid expensive according to him. I'm not eating gluten to do a biopsy. I'm so confused. Do I have this thing or not? Does it matter to have the biopsy or not? I'm looking for another Doctor. I'd like one who focuses on the whole human being...not just a symptom. Any thoughts on how to find one of those that takes insurance? Thanks for letting me vent!
  22. Does anyone know of a good dietician in the Vancouver, Washington area?
  23. Hi! I finally have my positive diagnosis of Celiac and while I know it's a tough road ahead, i'm so happy to have it! I'm ready to start feeling better. The first doctor who tested me for Celiac misread the blood paperwork, told me I did not have Celiac, and ordered more tests for me. She wanted to check my gallbladder next, and even prescribed me drugs for calming my bowels. I took the celiac results paperwork to another doctor and within minutes was told that it was a very strong possibility I had it. He didn't order the endoscopy because I've been gluten free for about a month now, and feeling better. I also didn't need to have that info for my own piece of mind - the bloodwork was enough for me. I want to report the first doctor who misread the paperwork. I am not a vengeful person - I don't want to get her in trouble, but I don't want others to suffer like I did with the wrong information. Would you consider reporting someone who was so clearly wrong? Anyone have any advice so I can help other people who might be seeing her? Thanks! Ami
  24. Hi. I'm looking for an experienced doctor who has experience and is up to date with the latest research about celiac. I don't want to go to him, but rather chat with him online or send him an e-mail with some questions I have. Any suggestions? Thanks.
  25. Hi Everyone! I'm new to this forum. I recently went gluten free (it's been about a week and a half) because of some stomach issues and migraines. I thought gluten might be connected, so I decided to cut out gluten to see if it made me feel better. Before cutting out gluten, I did an Advocare cleanse for 24ish days, and didn't eat many gluten filled foods during that time. Long story short- I feel SO much better already. The very dull pain i've always had in my intestinal area is completely gone, which has never happened. I know it hasn't been long, but I am also not going to the restroom as much (used to go 2-3 times a day). So now I'm reading the forums, and I am kicking myself for cutting out gluten before I was tested for Celiac. With the cleanse and going completely gluten free, I'm not sure how accurate the tests would be. I absolutely hate my doctor, and was hoping to find a new one, which is why I didn't go in the first place before cutting out gluten myself. So my question is... If I call and schedule an apt for blood work, how long do I need to be eating gluten first? Also- what should I ask for? Just a celiac blood test? Thanks so much for your help! This forum has already been tremendously informative and helpful.
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