moleface

Statistically, people with autoimmune diseases are likely to get dismissed by multiple doctors before receiving an accurate diagnosis. I think part of the issue is that the gluten-free lifestyle is viewed (somewhat accurately) as a "fad diet." I too dismissed the gluten free diet,, and I only stumbled on it randomly after I got a bout of iritis after a year of painful swollen hands. I didn't even have severe gastro problems at the time, besides constant constipation that I attributed to stress. Initially the doctors suspected rheumatoid arthritis, but I already went several thousand dollars in medical debt to get the iritis treated, and wasn't eager to go to more doctors uninsured. About two weeks after my iritis diagnosis, I suddenly lost a huge chunk of enamel on one of my front teeth. I googled something like "swollen joints, iritis, tooth enamel loss" and stumbled on celiac disease. It's been seven years of nightmare frustration since then. I think doctors expect us to infantalize ourselves and defer exclusively to their judgment. So if you suggest celiac as a possibility, even if you have all the textbook symptoms, doctors aren't too eager to let some peasant dictate their own diagnosis. Mindbogglingly, the stigma against "self diagnosis" is so strong among doctors, even though I later received a positive blood test during an unrelated hospital stay, no subsequent doctors will acknowledge the possibility of celiac, even gastro doctors. They always give me an impromptu blood test, and when I ask if it's able to detect gluten intolerance without me having eaten gluten first, doctors give me non-answers, then a 10 minute lecture once the test comes back negative. Infuriating. I've stopped going to doctors altogether after this treatment. On edit: To clarify, I DO have serious gastro issues, and a gastro doctor found iron deficient anemia and multiple ulcers in my duoedenum and small intestine. But the issue was far less bothersome before I went gluten-free - I just felt gross and constipated all the time, whereas after detoxing from gluten, I suddenly faced 4 hours of diarrhea every single day. This has been going on now for more than 7 years, and my entire schedule revolves around waking up 4 hours early to allow myself time to get violently sick. Every time I eat gluten, the symptoms revert back to constipation.

Yeah, this happened to me too. I got disagnosed with iritis and my blood test showed antibodies associated with autoimmune diseases, on top of a year straight of severe gastro issues and swollen hands. I only found out about celiac disease once I abruptly lost the enamel on several of my front teeth and googled the symptoms. Once I'd been gluten free for a couple days, I got far worse. I actually had no idea that gluten "withdrawal" even existed, and I only found out about this syndrome once I did additional research to find out why my condition worsened. This clinched it for me, though I haven't been able to convince any doctors or family members that I'm not a fad dieting hypochondriac. I handled the entire gluten detox myself, since I didn't have medical insurance at the time. I went down to 130lbs at 6 foot 1, developed explosive black diarrhea, started passing vitamin supplements whole, and my face went completely white. If I remember correctly, it took about two weeks before my system started to stabilize. My first year gluten free was the worst. One mistake would send me back to square one, though I never did experience "withdrawal" again.

I was hoping someone could help clarify this, because I'm very confused. Aren't enamel defects one of the telltale symptoms of celiac? Because a gastro doctor I saw had never heard of it, and recently the symptoms have been also baffling a dentist. Years before testing confirmed my celiac disease, I abruptly lost the enamel at the top of my front teeth and developed massive deep grooves in my incisors on both sides. This was after a full year of lost weight, severe constipation, iritis, and painful swollen hands. I've only had 3 cavities in my life, and initially assumed I'd chipped my teeth somehow. I only put 2 and 2 together once I found out about celiac disease. The dentist assured me that this must be from acid reflux. Problem is, my endoscopy found no damage to my upper G.I. Why is everyone so baffled by my teeth? I have yet to find anyone who even acknowledges that enamel defects on parallel teeth are even a celiac symptom. Other Drs accused me of not brushing my teeth, though dentists can tell that isn't the case from my lack of dental caries etc. I'm exasperated. I don't dare tell them that I read it online while researching celiac disease or I'll get the whole condescending "Never read WebMD" spiel I've heard countless times. Still, isn't this common knowledge? I thought dentists were often the front line of diagnosis because the enamel defects are so distinct.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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,

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.

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.