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  1. Hi Everyone, I'm just curious as to your opinion as to the nature of my abdominal discomfort/bloat/visible distension. Basis stats Age: 29 years old Height: 6'2'' Weight: 173 lbs Celiac History 1) Experienced abdominal discomfort/bloat/visible distension & constipation for years until via high antibodies and biopsy confirmed celiac disease at age 25 2) Went on a strict gluten free diet for 2 years. Only my constipation moderately decreased which never really bothered me. I ultimately completely lost my appetite from being gluten-free and went off the gluten free diet a few months later after losing lots of weight (I understand there's an increased risk of cancer, etc. when going back to gluten, but that doesn't really concern me actually). 3) I take miralax everyday which largely treats the constipation but doesn't really affect the abdominal discomfort/bloat/visible distension which bothers me very much. As a result of this distension, even though everyone thinks I'm very thin, I can't really wear a belt tight at all and need to wear loose clothing all the time or I would indeed get much more constipated and uncomfortable. 4) I also have some degree of urinary incontinence which I think is related to some element of muscle weakness from this bloating/distension as it's difficult to really empty my bladder My questions 1) Do other celiacs out there have a symptom pattern like this? 2) Do others think this is just fat? 3) If it were just fat, would it really be that uncomfortable to wear even a slightly tight belt? (I can't imagine fat people are in extreme discomfort most of their waking hours when wearing a belt) I know many will likely respond with "you really should be gluten free" and/or "you weren't gluten free enough". All I know is that being gluten free made me feel worse and that I researched the contents of everything I put in my mouth for 2 years which largely meant I didn't out at restaurants except those which specifically catered to celiacs. If I would need to be stricter than that, I'd just as soon need to wear a respirator outside for fear of inhaling a tiny gluten particle when walking near a bakery. That's not a life, it's a recipe for depression. thanks guys I've put a few links to pictures of my gut and a little video if you care to look. Pics: imgur.com/2WC1k.jpg imgur.com/ccj87.jpg imgur.com/k8FrA.jpg imgur.com/ulZJr.jpg Video: vimeo.com/11252511
  2. I agree with you though from reading studies on the risks of developing other problems, the relative increase is pretty tiny (e.g. the risk of intestinal lymphoma might be 3 times higher in untreated celiac disease, but the actual risk is miniscule to begin with... (the stats supporting such a relative risk are pretty risque as well)) I'm only concerned with what's certain and real as opposed to what's abstract and extremely unlikely. Keep in mind that the incidence of these other issues might appear higher here because generally only people with more serious celiac disease frequent forums like this (i.e. a biased population).
  3. Hi Everyone, I'd first like to say how nice it is to have such a large kind community of contributors in such a context. I'm curious if I'm missing something in my treatment and interpretation of my problems because, at this point, it seems as though there's nothing I can do to get any real relief... A number of years ago, I started to have constipation and both bloating and visible distension. -constipation for me defined as having a very hard stool every other day or so -bloating/visible distension being defined as having a large bulbous stomach when standing, minimal amount of "pinchable" fat, a general sense of discomfort; having to wear pretty loose pants such as to not be in extreme discomfort (e.g. I'm 6'2'' and 175lb wearing a 36 inch waist pants while having a body fat of around 13-15%) -- i find the bloating/distension bothers me least if i eat/drink absolutely nothing (as such, I've only had a minimal appetite for years and have to remind myself to eat otherwise I have other problems from being too thin) I was diagnosed with Celiac via blood tests and biopsy. Immediately afterward, I adopted a gluten-free diet (pretty carefully, I doubt I had much exposure to gluten). I followed this diet for a year (during which point my blood work decreased from 180 to 80 (where over 30 is positive)). At the end of that year, my constipation was somewhat improved but my bloating/distension did not improve at all. Also, during that year, I spent a period of time (3 weeks) having a virtually complete elimination diet (elemental diet) though it did not help my bloating/distension (no soy, sugars, etc.). After the year, I decided it wasn't worth it to continue the diet since it didn't help my primary symptom of bloating (I've since started taking miralax which has solved the constipation problem). My celiac bloodwork is now back up high but I feel no different than I did during the year that I deprived myself of gluten. I also have very little lactose in my diet (that makes me feel worse) though I do have a little low lactose cheese (ie hard cheeses). My questions are... Is there anyone here who's been able to solve their bloating problem? -How long did it take? -Did it seem to relate to your bloodwork? -Does anyone here understand the underlying mechanism for bloating in celiac? (I don't seem to pass much gas) -If it's inflammatory -- would/has prednisone helped anyone? -I've been trying low-dose naltrexone but it hasn't done anything for me Could this just be IBS? Do I just have to learn to live with being uncomfortable for the rest of my life? Thanks guys (and gals)
  4. I know I'm a bit lactose intolerant and as such, have very little lactose containing products My primary symptom of an uncomfortable distended bloated abdomen doesn't seem to cycle with what I eat that much --> it only seems to feel less uncomfortable if I avoid food in general I've tried a 3 week elemental diet under the theory that this might be some sort of bacterial overgrowth but it didn't help (and such a diet would have been free of lactose/fructose/gluten for that time) -- I still felt pretty bloated during those three weeks making me think this symptom may be a function of ongoing inflammation as opposed to some sort of other process also re: dietary compliance -- I was compliant as I could ever really be (my anti-gliadin was negative); if i became any more compliant I'd rule out eating out entirely (e.g. I would usually just eat mexican food like tacos which could have a spec of a gluten in them from a fleck of flour landing on them in the kitchen -- though if that's enough to set me off I should wear a mask everywhere...)
  5. Hi everyone, I was just wondering what people's experiences have been regarding their tTG results and their symptoms after they have become gluten free... Before going gluten-free, I had a tTG score of about 180 (where a high positive is > 30) 1.5 years later, my tTG is only 70, so still a strong positive but not as positive My primary symptom of a [essentially constant] bloated/distended/uncomfortable gassy stomach did not change at all over that 1.5 years (i.e. I'm 6'2'', 170 lbs, and still wear pants with a 36 inch waist despite being a muscular guy). My symptoms are the above mentioned bloated stomach and moderate constipation/sense of incomplete evacuation (the latter which is helped by miralax but alleviating the constipation has done little to help the other more concerning symptom). --> Have other people had these symptoms and had a high tTG? --> Will I have to wait until my tTG is much lower to experience any improvement? Thanks guys
  6. Celiac disease is an autoimmune disorder not entirely unlike Crohn's, IBD, etc. and hookworm/TSO appear to function as a sort of gut specific cortisone (similar to endocort) though with seemingly fewer side effects
  7. I'm just curious as to your symptoms -- I had a similar tTG result (180 or so) prior to starting a gluten-free diet. Did your symptoms go away even though your blood test is still "high"? What symptoms do you have? After about a year on the diet, I got down to a 60 or 70 (at the same lab/method/test kit/etc.) though my symptoms (mainly pretty constant distension and bloating never went away, i.e. right now I'm 6'2'' and 170 lbs with low body fat of around 11-12% though I have to wear 36 inch pants to only mostly be comfortable and look reasonable whereas most people with my stats wear a 32 comfortably) never changed. At that point, potentially prematurely, I stopped the gluten-free diet and eat whatever I want though I keep my gluten intake pretty low (my tTG is back over 100 now). I feel miserable and want to change something to hopefully improve my situation. Re: "Why can't our doctors just know more about celiac? argh" --> because most GI's are idiots since it's a relatively "soft" specialty in terms of interpretation of images and the relatively low litigation risk and besides, with celiac, there isn't an army of drug reps giving seminars, free lunches, and pushing drugs on GI's to give them to celiac patients
  8. Hi everyone, I was just wondering if anyone here has tried TSO/Whipworm and/or Hookworm therapy for their Celiac disease. It seems potentially helpful (granted there doesn't appear to be a tremendous amount of research on it). While trying out different diets might ultimately help me, fixing my immune system so I can live a comparatively normal life is far more appealing... Helminthic therapy
  9. I've had some cheese over that time and continue to do so, anything more than s small amount though and I also have an enzyme with it (lacataid). After reading through here, it seems as though there are people who do this diet for years with no improvement. The idea of that is pretty frightening to me, at least in my current state, life is tolerable. I don't feel I can pursue my life goals too readily or at all, but I can at least subsist whereas on gluten-free and feeling miserable, subsisting was tough (i.e. dating is tough since most more desirable women would (nor can I blame them) avoid me, being really thin is tough since I lost my appetite on gluten-free since decent tasting food required more work, I'd typically eat the same bland stuff day after day). Yes he did, I didn't seem to have much in the way of absorption problems Something like a year and half -- I don't eat much bread honestly anyway -- just once in a while I might have some pizza and I'm not paying attention to additives in things anymore (i.e. I have regular soy sauce instead of the wheat free soy sauce when I was gluten-free). Oddly enough, I grew to really like gluten-free pantry bread and still eat it as it's, to me, better than most conventional bread. -->I'm mostly curious about the underlying pathology surrounding my bloating/distension since it doesn't seem to really mirror other's celiac experiences (relatively constant) . I'd even provide a picture/video if that would help. -->Perhaps I have a particularly resistant case of bacterial overgrowth -- is constant bloating a typical symptom? i.e. I can suck in my gut but I feel a lot of pressure when I do that
  10. Hi Everyone, I'd first like to thank everyone for spending so much time and research into putting together such a high quality forum. I've been feeling uncomfortable for years and have only found some relief in one thing -- fasting or just eating very little which is unfortunately pretty unsustainable... Since my early 20's I gradually developed symptoms of bloating and distension along with moderate constipation. Having a bowel movement or passing gas seems to reduce the pressure to some extent but it's virtually always there (morning/afternoon/night -- doesn't seem to matter). I've been taking miralax for a few months which seems to help the constipation but does little to help the bloating/distension (i.e. I'm 6'2'' at 170 lbs, 12% body fat and have to wear 36" waist pants to avoid putting any unbearable pressure on my abdomen). In trying to figure out what's going on with me, I was tested for Celiac disease and had sky high serology (i.e. ~170 on a tTG blood test where 30+ was a strong positive) and positive pathology (Marsh II). After my endoscopy, I was very strictly gluten-free for a year and I felt absolutely no different even though my tTG dropped gradually to around a 40 on the same exact test kit. Since I felt no better after a year of being very strict (barely ever ate out except at restaurants which specifically cater to celiacs and ate salads the rest of the time out or prepared my own food), I gave up on the diet. Since I started eating bread again, I really feel no different than I did that year. I essentially thought -- if I'm going to feel miserable, I might as well not deny myself something which seems to have no impact on me. My serology is now high again (I had it tested out of curiosity) though I feel no different. I've tried zelnorm, amitiza, prilosec, activated charcoal, variety of enzymes, tons of exercise (aerobics, pilates), lactose free, soy free, a variety of antibiotics and even a 3 week vivonex diet for possible overgrowth. --> Is there something I'm missing here? --> Is this symptom of a relatively constant bloating sensation with distension common for celiacs? Is it a function of constant inflammation or more just my abdominal muscles having been retrained as a function of my gut generally being pretty gassy? --> Is my only real option to go gluten-free again and hope for the best? (not sure I can handle that again unless I had some real confidence it would help me) thanks guys
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