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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

moleface

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  1. OTC pain medicines are essentially useless for significant pain in my experience. Ironically, opioids are actually much better for your body, aside from the physical dependence issues. I always found it ironic that American doctors are so scared to prescribe fairly benign drugs like codeine that are OTC in pretty much every other developed nation, yet they have no issue substituting vicious toxic kidney-destroying NSAIDs. The biggest irony of prescription opioid medicines is that acetaminophen is the most physically harmful component of the pills. When I got discharged from a hospital after major organ surgery a few years ago, the doctors refused normal pain medicine and instead prescribed me a harsh prescription NSAID that was specifically contraindicated for use with another medication I was taking. They wrote off the 1% stroke risk as being "too rare" to worry about, and treated me like I was engaging in "drug seeking behavior" for declining the medicine. Unbelievable. I've had great experiences with niacinamide, which has strong COX inhibiting properties without a lot of the harsh body effects of the synthetic NSAIDs. You don't take it for the niacin - this modified form of the nutrient just happens to have other pharmacological properties. There are warnings that it causes "reversible liver toxicity" (i.e. it's hard on the liver but doesn't cause permanent damage), but I've taken it for half a decade and my liver labs always come up healthy.
  2. That's odd. Like the above poster said, the issue could be that you took it in capsule form. I've been taking powdered psyllium husk on and off for years, and I never have issues when I mix it in a glass of water. Psyllium husk seems to work even better for me than fiber-heavy foods. I still have daily diarrhea, but psyllium reduces the number of visits to the bathroom and also makes the whole experience less messy. I don't go a day without it anymore.
  3. I actually have this same symptom, but I haven't been able to find any definitive answers. I suspect multiple food sensitivity is a possibility, though I can't imagine what I could be reacting to. Either that or my gastro system has been so destroyed by a lifetime of heavy gluten exposure that I'm left with permanent symptoms even though I eat the same exact thing every day without much variation. A gastro doctor found ulcers and inflamed tissue in my duodenum and small intestine, even though I'd been gluten free for several years at that point, so I'm assuming that could cause these issues. My telltale symptom of a glutening is constipation. I wake up to 4-6 hours of diarrhea every morning regardless of diet. I take 50 billion probiotics, experimented with high and low fiber diets, tried going off vitamin supplements (which can easily cause diarrhea, especially vitamin c and other antioxidants), etc. and nothing helps. My original issue while eating gluten was hard incomplete stools. Ever since I went gluten free 7 years ago, my new symptom has been daily explosive diarrhea. Not to be graphic, but I literally have to shower after going because I spray it all over myself. The only time it abates is if I accidentally eat gluten-containing food, in which case I'm stopped up for 2-3 days before the diarrhea resumes.
  4. I doubt it. Just make sure you're continuing to eat gluten in the meantime. I shouldn't have said anything - I'm horrifically sick and no doctor will believe me, and even a gastroenterologist had never heard of the tooth enamel defects and instead implied that I don't brush my teeth, so I tend to end up relating everything to my own bad experiences. Sorry about that. Yeah though - false negatives aren't that uncommon, even with biopsies. I wouldn't worry about it unless it happens though. I just wanted you to realize that if you do test negative, it isn't necessarily the be-all, end-all diagnosis. On edit: I just noticed I quoted the wrong post. Oops. I was referring to OP's question, not the issue of gluten ppm in food.
  5. "Skeptical" doctors?

    Thank you for the advice! I'm so sorry that you had to deal with that. It makes me feel less alone to read peoples' medical horror stories online, but I hate to think of the potentially millions of people who are suffering because of the shortsighted egomania of doctors. You're right that I need to play dumb - I realized years ago that doctors take it as a personal affront if a patient doesn't infantalize himself. Still, I get the distinct impression that these golfing yuppies are just offended by the idea that a lowly peasant could possibly know something that they don't. That attitude would be bad enough, but peoples' lives are literally being destroyed by it. Sometimes I get so frustrated and angry that I'd rather just continue rotting away from the inside out than subject myself to that smug condescension any longer. Even before my issues with my gastro disease, I had similar experiences with other health problems. I had necrotizing strep I'd been carrying for more than half a year, and exactly two weeks before I ended up hospitalized with a collapsed lung, an ER doctor told me I was suffering from "allergies." When I brought this up with the doctors in the hospital, they insisted that I must have developed pneumonia in the two weeks between the initial ER visit and my hospitalization. Yeah, sure - in two weeks my lungs abruptly developed abscesses and filled up with sacs of pus and blood. After my lung surgery, I spent the next four months coughing up fluid until I gagged. My family literally begged me to return to the doctor, which I was hesitant to do because I still didn't have insurance. The E.R. doctor told me matter-of-factly that "strep can't cause pneumonia", and when I lifted up my shirt and showed him the scars from the lobectomy, he just stared, said nothing, and then changed the subject. Keep in mind, this is the exact same hospital where the surgery had been done several months prior. As I was leaving, I heard the doctor who'd seen me talking to the nurses - "Well, if he doesn't trust the staff's expertise, then I don't know what to TELL him...". I wasn't even being difficult or forceful - the issue seemed to be that I had the audacity to politely disagree with the all-knowing doctor. I know I'm only hurting myself if I spend every day getting violent diarrhea with full-body inflammation, but part of me wants to bail altogether. The frustration of dealing with these doctors makes me feel like I'm losing my mind. I feel like I have to grit my teeth and politely agree when people are condescendingly lecturing me that the sky is green. At a certain point, when everyone around me is telling me to doubt my own perception, I can't help but let serious self-doubt seep into my psyche. It's so frustrating. I won't even hedge my words anymore - I legitimately hate doctors now. These are the same types who would've snickered at anyone who disagreed with lobotomies back in the 50s or 60s.
  6. OP - I don't mean to complicate matters, but from my experience, an endoscopy won't necessarily detect celiac disease in all cases. I tested positive via a blood test back in 2013 when I still had high levels of antibodies in my system, and I wasn't surprised because my symptoms were so specific - especially my abruptly dying tooth enamel. But when I finally got health insurance a few years later, I tested negative via the more invasive procedures. Now doctors treat me like a hypochondrac merely because the biopsy came up negative. They make comments about my "lifestyle" and give me print-outs that include the recommendation to eat a balanced diet with lots of "healthy" whole grains. I'd say that if you're eating gluten and have only been gluten-free for about a week, you shouldn't worry too much about a false negative. Apparently it isn't all THAT uncommon though, so I wanted to give you a heads-up in case that happens.
  7. Parallel rash on chest + belly button?

    Some people get rebound symptoms when they go gluten-free, though it's a minority of patients. Maybe that's the issue? When I first went gluten-free years ago, I dropped even more weight and my inflammation worsened for several weeks. I know I wasn't imagining it, because at the time I had no idea that a certain percentage of people get "withdrawal" from gluten exposure, yet I looked and felt like death. I went down to 130 pounds at 6'1". If you're relatively new to the gluten free diet, it's possible that you're getting cross contamination. Also, from my own experience, I find that I started reacting severely to even tiny amounts of contamination after going gluten free, even though I didn't get nearly as sick back when I was regularly eating loads of gluten. One culprit could be foods labeled "gluten free" - the standard is 20ppm. Unless you're eating inherently gluten-free food, that's always a possibility. I've gotten symptoms from supplements that were labeled gluten-free but were produced in the same facility as wheat products.
  8. Parallel rash on chest + belly button?

    I always bring copies of my medical records with me to doctor visits. I've posted about this elsewhere on this forum, so I'll try not to be long-winded, but medical records don't seem to convince doctors. I got referred to the gastroenterologist by a physician who thought I was a hypochondriac. He gave a blood test, which I pointed out can't detect celiac unless the person has eaten gluten for months on end, but he sidestepped my question and said "Oh, I wouldn't ask you to eat a Twinkie and get sick." Once the test came back negative, he gave me a condescending lecture about "assuming things." After that frustrating experience, I went to the hospital and got copies of all my medical records. Even with later doctors I've seen, bringing in copies of my diagnoses doesn't seem to make any difference. It seems that being labeled a hypochondriac overrides all other evidence in the minds of most doctors. I wouldn't have necessarily complicated matters by telling my doctor about the negative results, but any subsequent doctors I see always ask for the previous physician's records, which includes the hypochondria diagnosis and the negative celiac blood test. Doctors always avoid any questions about celiac and instead give me printouts of high-school-level nutrition advice. They also make comments about my "lifestyle", which seems to imply that my constant diarrhea is caused by a poor diet. I've spent the last decade taking methyl b12, 50 billion probiotics, turmeric, etc., plus drink a gallon of water a day and eat literally no processed foods, so I have no use for basic advice to drink water and eat fruits and vegetables.
  9. For several years, I've been getting a recurring rash on my upper torso. It always extends from the front of my shoulders down my chest, then becomes more sparse toward my stomach, eventually turning into in solid red ring on and around my belly button. The pattern is always almost exactly parallel on both sides of my chest. Has anyone else here experienced this? I know this sort of thing is common with celiac disease, but I've read very little about it being in such a specific pattern. It always coincides with an autoimmune flare-up. I'd go to a doctor, but every time I've asked doctors about the rash, they just write it off as "skin irritation" and sidestep my questions. After four or five doctors did that, I stopped trying to get a diagnosis. I'm not self diagnosing; I tested positive for celiac via a blood test four years ago but doctors won't listen to me after a gastroenterologist's later celiac test came up negative. He only had me eat gluten for two days before giving the test, and he'd also never heard of celiac causing tooth enamel defects, so I'm assuming that he's just ill-informed about the disease. Thanks!
  10. "Skeptical" doctors?

    As a quick follow-up, I wanted to say that I'm trying once again to find a doctor who will take me seriously, and I'm hoping that hedging my wording during visits will yield better results. If not, I'm pretty much at a complete loss for what to do anymore. I'll post my results to this thread once I've gone to some appointments. I developed painful iritis/uveitis again this week but I still haven't gone to a doctor. I'm not sure why it's considered "self diagnosing" to assume that I have iritis again, especially since I've had it yearly for the better part of a decade, plus the fact that the symptoms are always very distinct. In every one of these cases, I brought copies of my previous iritis diagnoses to the first visit, and my suspicion was always confirmed by a specialist during the subsequent appointment. Not sure why doctors are still so quick to think I'm imagining everything, even after repeatedly being proven wrong through medical tests. I'm about as far from a hypochondriac as someone can get. I don't even like going to doctors - until I had medical insurance, I went twice in 20 years. Over the last decade, I broke several bones while out biking and running, yet always just wrapped up the injury and waited for it to heal without any professional medical treatment. Then the rare doctors who DO take me seriously say that it's my fault that I'm so sick because I "refuse" to go to doctors. I feel that it's lose-lose, no matter what I do. If this final attempt to find a competent doctor falls flat, I'm considering dropping out of the medical system altogether. If I try to deal with it on my own, at least I wouldn't have to deal with wealthy "3 martini lunch" golfer types literally laughing at me,
  11. "Skeptical" doctors?

    Thanks for the advice and support! I go out of my way to avoid saying anything that could be construed as "self diagnosis," but I end up being forced to gently suggest the possibility of gluten intolerance once the doctors seem baffled by my symptoms. Especially when I point to my teeth and get comments about my "lifestyle" - at that point, I'm just defending my honor in the face of people who seem to be suggesting that I don't brush my teeth and/or do meth. My teeth are actually my biggest issue. If I wasn't being blamed for my missing tooth enamel, I wouldn't bother trying to convince anyone that I have issues with gluten. Re: Crohn's disease - as far as I know, the disease is idiopathic. From what I understand, Crohn's is just a name for systemic autoimmune inflammation that affects the gastro system. So considering that I react so strongly to gluten, I'd assume that my condition is essentially "end stage" inflammation caused by a lifetime of heavy gluten exposure. Or I may suffer from multiple food sensitivity, though I don't anticipate any doctors willing to explore this possibility. My symptoms eventually improved once I went gluten-free, at least in the sense that I have constant diarrhea instead of bloating and constipation. Whenever I eat gluten by mistake, the telltale symptom is that I get stopped up for a day or two. I guess I shouldn't be surprised that doctors can be so irrational - I mean, this is the same group of people who tell themselves that free lobster dinners and medical symposiums held near golf courses aren't just transparent drug company bribes. It's still infuriating that these people literally hold my life in their hands though. What about discretely recording audio of the visits on my phone? Most doctors I've seen play the hypochondria card, but one doctor who DID take me seriously instead told me I was delusional for thinking that other doctors were so dismissive. I'd like hard evidence that I'm not behaving irrationally during appointments. I feel that most physicians will bend the facts to make the patient the problem, if the alternative is to admit that a fellow doctor may have made a mistake. The medical field is shockingly cult-like.
  12. "Skeptical" doctors?

    Yeah, I'm surprised too. I wasn't even aware that it was such a serious disease - despite the fact that doctors apparently think I'm some WebMD-reading fad dieter, I almost never worry about my health. As long as I'm taking good care of myself, I consider everything else to be beyond my control. I assumed that it wasn't that big of a deal because I didn't think a doctor would just discharge me to my own devices after giving a serious diagnosis. I spoke to a friend who's a nurse, and she thinks that the issue is that I currently live in a small town. Small communities tend to lag behind large cities socially, so I'd assume that the same applies to the medical field. There's actually a weird bias against health food here - at jobs, I get ridiculed by coworkers for being spotted eating fruit salad or whatever on my lunch break. I suspect that most doctors around here consider the gluten free diet to be a "liberal" health food fad. Not only that, but I only recently got health insurance and I still go to the local sliding scale health clinic for care. I'm assuming that the quality of care provided at a public clinic must pale in comparison to a normal doctor. I've been turned away a couple times because the doctors there tell me I have no record of iritis or Crohn's. Last time this happened, I asked them to check my charts, and they came back 10 minutes later saying there was no record of it. This same doctor ordered an impromptu blood test and then mailed me a passive-aggressive letter (they NEVER mail letters) telling me my blood tests were "fine". I'm assuming this is because I reported him to the front desk for refusing to treat my iritis, and he caught wind of it. I've gotten iritis once or twice a year since 2011, and the symptoms are impossible to mistake for something else, yet despite my history most doctors tell me I'm "self diagnosing" when I come to them during a flare-up. That same doctor changed the diagnosis from iritis to "red eye", and I ended up sustaining permanent vision damage after having iritis for several months. My eye on that side no longer dilates, for whatever reason. Weird stuff. I think the issue is that somehow "hypochondria" got put on my charts. Once you get diagnosed with that, it's the kiss of death. Doctors seem to think that a hypochondria diagnosis trumps all other evidence. I hate to say it, but I'm really starting to hate doctors after going through this. I got sick 7 years ago and I've all but given up trying to get help after these frustrating experiences.
  13. "Skeptical" doctors?

    Oh, definitely. I'm not dismissive of the Crohn's diagnosis, but I'm just confused why gluten intolerance is so out of the question to doctors. When I ate wheat for two days leading up to my gastro procedures, I developed itchy hands - a symptom I didn't even know existed. I also eat an extremely healthy but limited diet, and every time I get sick again, I look at anything different I ate during that period and inevitably find that I got contaminated. The tooth enamel is another dead giveaway. As far as I know, no other disease causes the tops of the teeth to die off like that. When I asked one doctor about it, he made a comment about my "lifestyle." Meanwhile, I've always been an obsessive flosser and tooth brusher and have only had a couple cavities in my entire life. Thanks for the advice!
  14. Hello! I'm just wondering if anyone here can offer any advice on how to convince doctors that I'm gluten intolerant. My history- I've always been underweight no matter what I eat and prone to illness, and I've had severe pneumonia three times, one bout requiring a partial lobectomy. I never considered any sort of disease as the culprit for my poor health, but I accidentally stumbled onto celiac disease back in 2011. I'd been running daily for several years, and was trying to bulk up on the cheap by eating a box of pasta a day, oatmeal, bags of cereal, and any other inexpensive high-calorie foods I could get my hands on. For about a year, I began dropping weight and developed painful swollen hands. I finally went to the E.R. after one of my eyes turned bright red and felt excruciatingly painful, where I was referred to a specialist and received an iritis diagnosis. A couple weeks later, I abruptly lost the enamel on one of my front teeth. I looked up the symptoms, and found that it was textbook celiac. Without reading too much about celiac disease, I decided to cut out gluten just on a whim to see if my symptoms improved. Within a week, I started rapidly dropping weight and my face went white. At its worst, I passed easily-digestible gel cap vitamins whole. I did some more research, and found that a minority of patients actually get worse when they cut out gluten. Considering that I had no idea that this phenomenon even existed, yet still got much worse even though I was expecting to feel better, that clinched it for me - I likely had celiac disease. Once the "withdrawal" period passed, I ended up gaining 20 pounds despite the fact that I was eating far less than before. Whenever my bowel habits suddenly changed for the worse, I'd scour my diet and find that I made a rookie mistake - eating soy sauce, cross-contaminated oats, etc. I didn't have health insurance until several years ago, so I never sought care for my gastro issues. I ended up in the hospital in 2013 for a necrotizing strep infection, where I received a blood test that finally confirmed celiac disease. Fast forward a few years, and I'm finally insured and want to do something about my symptoms. I went for my first appointment with a family doctor, who treated me like a wackjob fad dieter. I didn't have copies of my medical records yet, so I had no defense at the time. Every symptom I told him was met with the same condescending dismissal - "who TOLD you you had iritis?" etc., and he then proceeded to give me an impromptu blood test to check for celiac. When I asked "But don't you have to eat gluten first to test positive?" he smirked and gave a non-answer - "Oh, I wouldn't ask you to eat a Twinkie and get sick." The nurse was openly hostile after running the blood test, and sharply said "you're fine" before the doctor came back into the room and gave me a lecture about "assuming" that I have an illness. He then referred me to a gastro doctor. The gastro doctor did an endoscopy and colonoscopy, and found iron deficient anemia and ulcers in my small intestine and duodenum. He had me eat gluten for two days leading up to the procedures, which he claimed was ample time to test positive for the disease. I'm aware that doctors tend to take it as a personal affront when patients disagree with them, so I played along and acted overjoyed to find out that I could eat wheat again. His diagnosis was Crohn's disease. But when I politely asked if my tooth enamel defects are a symptom of Crohn's, he confirmed that they aren't, but had actually never even heard of celiac disease causing tooth enamel loss. After gently pursuing this line of questioning further, he finally said "I'm not a dentist" and walked out in a huff without saying goodbye. No follow-up care was offered. Ever since that initial GP visit, I've had nothing but overt dismissal from every doctor I visit, even when I bring copies of my medical records. I feel that the more doctors I see who make a snap judgment that I'm a hypochondriac, it just adds yet another doctor to the list of physicians who put down "hypochondria" or "anxiety" in my medical records, which makes it even more difficult to be taken seriously by future doctors. My health has been failing me in recent years - no matter how immaculately I eat, I have to get up at least four hours before I need to leave the house so I can get repeated bouts of severe diarrhea. This entails literally getting up at 2 am to get to an 8 am appointment. I can't live like this much longer, but I've stayed away from doctors in recent years because I literally break down in tears from sheer frustration once I leave the office. Can anyone offer any advice on how to handle doctors? I always make sure that I defer to their judgment and try not state anything in absolutes, and I'm naturally a very friendly and empathetic person, so my demeanor isn't confrontational. I'm dreading going to a new gastro doctor because I'm half expecting to be told that I'm imagining everything. I'd think that a Crohn's and iritis diagnosis, plus a positive blood test, would be enough to convince most reasonable doctors, but apparently not. Thanks!