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  1. Good evening everyone, thanks for reading this post. A bit of background about me... I’ve had problems for around 20 years, but everything got really bad around the time I got pregnant 8 years ago. I started getting things like bloating, my small intestines move my tummy up and down, excessive wind, abdominal pain, migraines up to 5 days a week, balance problems, feeling/being sick, depressive, anxiety, acne, itchy blister like rash on feet, hands and face, heartburn, joint paint in hips and back so bad I often can’t stand up for long or can’t stand up straight. I have tingles in my hands and feet and legs. I have a shooting nerve pain from my head/neck down my arm. Heart goes fast & heart palpitations, I can swell up. Struggle breathing. Constipation and diarrhoea. Mucus in stools. Tinnitus. Stomach aches. Brain fog. Tired. The list goes on. Last year I couldn’t take anymore and as I was fed up with feeling so sick all the time. The NHS told me I was lactose intolerant, but I never felt better, so I paid to see a Dietitian, who is incredible. She told me to give up dairy and soya and I instantly started feeling better. She said I had an dairy and soya allergy. Fast forward 10 months and I still had the underlying problems with wind, bad abdominal pain, bloating, acne, blistery itchy rashes, (my face was completely out of control with this strange red/blistery rash) migraines just ones a week (I feel I am blessed in comparison to what I was), heartburn, stomach aches, stomach moves up and down, balance problems, tingles in my hands and feet, stabbing nerve pain from neck to arm, tinnitus, joint problems, mucus, depression, heart palpitations, sleep problems, feeling too hot or too cold. I have recently been told I have SIBO (small intestine bacteria overgrowth). I have been on the low FODMAP fruit and veg diet, which did nothing. By pure accident I took out wheat from my diet and suddenly realised I was feeling better, so my dietitian told me to go gluten free, which I did for 5 weeks. My skin had never been so clear. My face looked different. Stomach stopped bloating, wind improved, the inflammation from my back ache/hip joints improved, but the hip pain is still there, depression lifted, heart palpitations gone, felt so energetic and happy, heart burn and balance problems gone. I then decided to go back on wheat as I want to get tested for celiac, which I am on the waiting list for. I am in the UK, so it could be a very long wait. I have now been gradually reintroducing it for 3 weeks. Going back on gluten, everything has come back, except my wind and abdominal pain isn’t as severe (not everyday anyway, but maybe every other day). My balance seems better. But everything else is there, acne, itchy rash, terrible joint pain (I have just had an X-ray to test for osteoporosis and am having bloods to test vitamin levels and for arthritis), mucus in stools, sometimes they float, I have this weird thing where I can see my small and feel intestines moving about. I have videos of my stomach doing the Mexican wave, it’s like I am pregnant. I’m irritable and depressed, heart palpitations back, feel tired, heart burn back, urgency for toilet back, tingling in hands and feet never disappeared. Because my stomach doesn’t seem quite so severe, I started wondering if my dairy and soya allergy may have disappeared. I’ve had a tiny bit of Clover butter and been ok. Now I can’t decide whether to try other things. I am also being tested for inflammatory bowel disease as I had blood in my stools at times along with the mucus. I think that will be negative though. I’ve had 20 years of feeling rubbish, eliminating this that and the other during the course. Could 5 weeks of gluten free have cured my SIBO, dairy and soya allergy and gluten problem? I want to know what experiences you had if you accident had gluten or tried reintroducing it. Was it a slow downhill process or instant and what were your symptoms? Was it all GI or other symptoms? I read that everyone is different, but I’d rather hear from real people. I don’t want to obviously have an endoscopy/bloods if I don’t need to, but I also don’t want to continue not knowing. My brother has similar problems and I have also watched my mum have problems over the years (although she wouldn’t say anything). My little girl who has just turned 5 always makes me think as she’s always got such a pot belly. She’s tiny, always been very skinny, with a pot belly. She has soooo much wind all the time. She always needs the loo, but often it’s wind and her stools can be quite explosive. Thank you in advance for reading this, I really appreciate any advice.
  2. Hello, and thank you for your interest. I've never seemed to really have the time for forums, but I'm giving it a try for two reasons: first, perhaps someday it will inform someone asymptomatic considering going gluten-free that, maybe, there could be risks, and second, because I have no idea what's going on anymore, haven't found any similar cases online, and am hoping for some advice from people with greater experience. The following is a product of my memory and a number of notes I took regarding my symptoms once things started getting bad. Henceforth, I shall reserve the term ‘pain’ to refer to ‘sharp pain’, which I define as discomfort that appears to affect my breathing (i.e. gasping, holding, unsteady, etc.). I shall use the term ‘ache’ to refer to ‘dull pain’, which I define as discomfort that does not encourage any changes to my breathing (excluding the expression of discomfort, i.e., moans, cries, expletives, etc.). I will put numbers [#] or intervals [#-#’] following a symptom to provide a measure for the intensity of discomfort out of 10 caused by the symptom. I apologize in advance for the length; it is a long story, so hearken here and gather 'round all ye ready for a tale… ------------------------------------------------------- First, some basic personal info: I'm a 29-year-old, ~165 lbs. male in grad school with no marks of malnutrition I know of (strong teeth, healthy weight, intelligent, etc.), and (before all this started at least) no known allergies or autoimmune problems of any kind (though my father has psoriasis). I have never shown signs of hypochondria, and, if I’m honest, have usually required prodding to consider going to the emergency room (ER) or doctor. Recently, I have started to suspect in hindsight that I may have had some mild, lifelong constipation. Finally, I was diagnosed with obsessive compulsive disorder (OCD) when I was 12 and have taken fluoxetine (SSRI, anti-depressant) since, though have still dealt with compulsions daily. It is a constant struggle, for which I’ve done behavioral therapy, and engage in at least 30 minutes of mindfulness meditation daily as well. While attending college I was diagnosed with adult ADHD and prescribed Vyvanse, which I’ve taken daily for ~8 years now. Roughly 4 years ago (Summer 2015) a relative of mine was diagnosed with Celiac Disease (celiac disease). While I had no symptoms (asymptomatic), I got a blood test and was found to be borderline, so my doctor suggested that I start a gluten-free (gluten-free) diet. While not terribly pleased by losing glutenous foods, the neurological connections to celiac disease made me think my OCD might improve. After all, even if it didn’t seem to help, everything I read seemed to suggest I could always just go back to eating gluten again. Thus, in January 2016 I switched to a diet of mostly potato patties, fruit, and celery in the morning and a mix of rice, beans, broccoli, cheese, and a little chopped meat for lunch and dinner. I initially lost a little weight (5-10 lbs), but returned to my normal weight within a few months once I got the hang of it. I was a little depressed at first by the loss of glutenous food, but tried to remain positive. However, after a while gluten-free, I noticed a very mild but slowly worsening gut ache [1-3]. Further, while I had been drinking milk religiously my entire life, I found it now made my stomach ache [2-3] after going gluten-free (it is noteworthy that I did not appear to have a similar issue with cheese, suggesting Casein's the problem?). Being extremely stubborn and feeling gluten had already restricted my diet enough, I refused to give up milk for another 3 months, but finally gave in as the discomfort worsened [3-4]. I also began noticing the development of other disconcerting issues, including mild fatigue [2] and a painful red rash [4] on my neck that appeared when stressed (mostly in cases of lack of sleep). Worried by these developments, I looked up more info online and found out how I really should have gotten an endoscopy+biopsy before going gluten-free. I asked my doctor, got directed to a gastrointestinal (GI) specialist, scheduled an endoscopy for ~3 months down the road (March 2017), and started eating gluten again. This is where things start getting weird: I found that upon eating gluten again, the gut ache vanished, and I could drink milk again. I had already gotten hints of this impression from a couple instances of likely gluten contamination, but this seemed to confirm it. While the endoscopy report suggested nothing looked amiss visually, the biopsy showed some villus atrophy suggestive of (among admittedly a few other things) celiac disease, and my GI doctor made the diagnosis of celiac disease (Summer 2017). Still concerned with the constant, worsening gut ache and the discomfort from drinking milk (both of which returned upon resuming a gluten-free diet), I continued to see the GI specialist, who scheduled a Lactose breath test. This came back negative. By the time I saw my GI specialist again it had been another 6 months gluten-free (scheduling both appointments and testing involve ~2.5-3 month wait times), and by then the ache had returned and worsened [3-6]. He recommended a hydrogen breath test, but due to an internal error, this didn't get scheduled correctly. I did not make too much of a fuss, since, if I'm completely honest, I had not been much impressed by the usefulness of the Lactose test, and all these tests were getting expensive for a grad student. Moreover, by the time I found out, the ache had grown severe enough that I had started intentionally eating gluten periodically, as it appeared to sort of 'reset' the growing gut ache, and was finding it a workable, if temporary, solution (~March to June 2018). In general, I also remember (throughout but especially around this time) not being able to shake the feeling that I was somehow hurting myself with the gluten-free diet, but suspicious of my desire for glutenous food and with the same encouragement from others, I ignored the feeling. Now, starting in May 2018 I had also started taking an herbal supplement encouraging good circulation for an unrelated, lifelong health issue. While this originally seemed fine, beginning around July 4th I started to feel dizzy [2], sweaty [1], and having pain in my chest (heart) [0-5], lower-left abdomen [0-5], upper-left abdomen [0-2], and a vertical pressure [2-5] slighly left of the middle of my abdomen (right where my aorta should be). This came to a head July 7th, when one night it got so bad [7-8] that I couldn't sleep, kept hyperventilating (which I repeatedly calmed using breathing techniques learned in behavioral therapy), and felt 2 'tearing' pains [4] in quick succession in my chest (just left of sternum, near 4th rib) followed by an immediate decrease of the (aorta?) pressure I’d been feeling. Finally realizing the supplement might be behind it, I stopped taking it the next day. Most of the symptoms subsequently went away, save for an ache in my chest [2-4], pain in my lower-left abdomen [2-3], pain in my upper-left abdomen [0-2], a lump in my lower throat [2-3], and a general ‘hollow’ feeling in my left side, all of which have remained (with varying intensity) up to the present. Since my grandfather had total heart failure at 36 and, after several instances, later died due to a genetic predisposition for a prolapsed mitral valve, I was concerned when the chest (heart) discomfort failed to go away after several days. Convinced by my friends that I probably should have gone to the ER that night, I went and got a chest x-ray, abdominal aorta ultrasound, and electro-cardiogram, none of which showed signs of trouble (July 2018). Later (January 2019), while trying to get to the bottom of all the pain I was in, I would also see a cardiologist who did an exercise stress test, a 24-hour holter monitor test, and an echo-cardiogram, none of which suggested anything untoward, and leads me to suspect my heart itself is okay despite the chronic discomfort. Now, back to the matter at hand: after that night of cardiac distress, the next time I tried to eat gluten I had severe nausea [6-7] and vomited. A month later (August 2018) I tried to eat gluten again, and had terrible pain in my upper-left abdomen [7-8] and an intense, painful, bloating sensation just below where my ribcage meets [6]. I later did some research online and found discussions of celiac disease being 'activated' by a stressful physical event, and suspected this might explain my sudden development of symptoms. That said, I found nothing regarding cases of asymptomatic celiac disease becoming symptomatic, and nothing about going gluten-free causing bacterial overgrowth (which was my leading theory on the growing gut ache), though I did find it commonly develops in patients with celiac disease. In any case, deprived of gluten, I lost the defense I'd been using against the growing gut ache. Eventually the ache became debilitating [5-6], and was accompanied by significant gas (~30-40 instances of flatus daily), increased burping, discomfort for around ~2 hours after eating [2-6], worsening of the lump in my throat [0-5], increased bowel movement urgency, occasional mucus in stool, irregularity in bowel movements, and intense fatigue [4-6]. Fortunately, this peak in symptoms occurred right around my next GI appointment (October 2018), where, considering the apparent severity and symptoms, the doctor decided to prescribe antibiotics for Small Intestinal Bacterial Overgrowth (SIBO) despite not having results from a breath test. Shortly after taking the antibiotic, I began to feel much, much better; the growing gut ache and gas largely disappeared, though notably the off-and-on pain in my lower- and upper-left abdomen and the ache in my chest (heart) remained. The lump in my lower throat also returned off and on [0-2], as did the gut ache gradually over time, which now generally included a sore tenderness throughout my belly [1-2]. Free of the crippling gut ache, I turned my efforts to sorting out the remaining fatigue and discomfort. I got a thyroid panel (November 2018), where I had mildly high levels of TSH (~6.4 to 7.4) in 2 consecutive thyroid blood tests six weeks apart (which could explain the lump in my throat), though thyroid antibodies returned negative and T3 & T4 levels remained normal. Hoping to avoid a recurrence of SIBO, I also tried several shifts towards a low FODMAP diet consisting mostly of salad, sweet potatoes, plain white chicken, fish, and a big mug of bone broth (with quality gelatin added in for good measure) every day (by this time, I had switched to 2 meals a day to minimize time spent incapacitated after eating). Nevertheless, by February 2019 the SIBO was back [5-6], and I had to request another round of antibiotics, which left my gut feeling even sorer than the last time. The continuing fatigue [4] left me tired all the time, and the lump in my throat began to be accompanied by an occasional ache extending down into my upper torso slightly [4]. Over a month after stopping the 2nd round of antibiotics (April 2019) I was finally able to get the Hydrogen breath test, and while I felt a rise in discomfort after drinking the glucose [from 2 up to 5], the test came back negative. However, my GI doctor suggested the tests aren't all that reliable and the effectiveness of the antibiotics is strong evidence. In this time (around January 2019 and on), I should also mention the chest (heart) ache had begun to mildly spread into my left shoulder [1-2], arm [0-1], and leg [1-2], as well as up the left side of my neck and head [0-1] (though to be clear, these are more worrying than intense, and other than my neck and head they seem closer to muscular aches). Perhaps related to the former, during a visit home my family pointed out that the way I walk has changed: my left heel turns inward, enough that it has warped the shape of my shoes over time. Over the winter (Jan.-April 2019), I also noticed my left leg seemed to get colder faster than my right, and whenever I exercise the muscles of both my left leg and left arm appear to tire faster. I occasionally have mild headaches [1-3] in the left side of my head, which while I found initially disconcerting, is evidently not terribly uncommon in people. Meanwhile, having been monitoring my TSH (which was up to ~9.4 by March 2019, but still negative on thyroid anti-bodies), I was prescribed a low-dose (25 mcg) of Levo-Thyroxine for the Hypothyroidism I was mysteriously developing. Unfortunately, I found the new medicine not only made my stomach hurt [3-4], but also didn't much alleviate the fatigue or lump in my throat, and appeared to make the chest (heart) discomfort worse [3-5]. Fearing Hashimoto's or other autoimmune disease commonly paired with celiac disease, I got a thyroid ultrasound (March 2018), but it returned unremarkable. My next doctor visit 6 weeks later showed a TSH of 8.9, so my doctor increased the Levo-Thyroxine dosage (50 mcg), though could offer no comment regarding the chest (heart) discomfort it seemed to exacerbate. Before I started taking the increased dosage however, my GI doctor suggested I hold off on taking anymore Levo-Thyroxine to see where I stand in TSH without the medicine, which I've done for ~6 weeks now and will be getting checked again soon. That largely brings us to the present, save for one last development. A few weeks ago (May 2019), I caught a stomach bug from my roommate. While mildly unpleasant for him, it was the first time I'd gotten sick with anything significant since this all started, and it felt more intense than any sickness I can recall [8-9]. Enough so that when I felt the rise in nausea that usually precedes vomiting, it was so intense I briefly blacked out and fell into the wall (something I've never experienced before). After coming to, I suddenly became drenched in sweat over a dozen seconds or so, despite lacking any noticeable fever and sitting still. Having trouble thinking clearly and worried by the fainting, I entrusted myself to my roommate, who took me to the ER where they explained I had an incidence of 'Vagus syncope' due to my Vagus nerve being overstimulated. My particularly intense reaction to what seemed a common 24-hour stomach bug has lead me to wonder if perhaps the nerves of my gut may just have somehow become hyper-sensitive causing constant “functional pain”, which could explain why so many tests have returned negative. Then again, it could also just be the bug was particularly hard on my gut because it is already inflamed. Naturally, neither can be considered more than just speculation on my part, but I wish to make it clear this instance of sickness was very far from ordinary as far as my life experience is concerned. That largely does it as far as history goes. My diet has relaxed to a fusion between my former gluten-free rice-based diet and the low-FODMAP (also gluten-free) diet. I regularly take Berberine, which has appeared to help keep the SIBO from recurring for at least the last 4 months. I still experience mild to severe gut discomfort after eating for around 2 hours [2-6], and thus stick to 2 meals a day. ‘Small’ (a relative term) quantities of gluten (1 cheez-it/day over 1 week in May 2019) no longer appear to cause a noticeable reaction, though I have not repeated this or any other tests involving gluten over the last several months in fear of aggravating my gut. Moreover, with the constant (but inconsistent) gut symptoms I have, I’m not sure I can confidently identify a reaction anyways. I still have trouble with milk [0-4], but try to eat at least some dairy regularly to avoid losing the ability to. The most consistent source of discomfort in the last few months is in my lower-left abdomen [2-6], followed by the upper-left abdomen [0-6] and chest (heart) [1-6], the 3 of which appear to be connected somehow. When particularly intense [>4], these sources of discomfort will also extend into my back, and in the case of the chest (heart) ache I can sort of feel where the two tearing sensations occured. On rare occasion the upper-left pain will be mirrored to my right side, though with lower intensity [0-4]. My left leg and arm still tire faster and still constantly ache a little [0-2], but beyond being disconcerting this usually remains only a very minor annoyance. I'm still terribly tired [3-6], and the lump in my throat comes and goes [0-4]. Mornings continue to be when symptoms tend to be at their worst. ----------------------------------------------------- That should do it; if you’re still reading this, I both respect and appreciate your determination and perseverance. If I didn’t sound all that worried throughout all this, know that it is entirely an affectation; I’m pretty much terrified at this point. I’m always tired, I’m losing my handle on my OCD, my daily meditations are in shambles, and I am constantly falling behind with my work with all the time lost incapacitated after eating (enough now that I suspect I’ll need to put off graduating). Even more though, the gradual changes in my personal behavior and outlook on life deeply frighten me. Obviously, it makes no sense (scientifically, as far as I understand it) that my problem was/is being gluten-free, and indeed, I could easily believe I shouldn’t eat gluten despite its former effectiveness at easing the growing gut ache. More, I suspect my original change in diet somehow messed up my gut biome, and my ‘glutenings’ were re-establishing whatever was going on before. My positive response to antibiotics seems to demand my problem at least involves something to do with gut flora. The hypothyroidism remains a complete mystery to me, seeing as the antibodies are negative. The hollow feeling and localized pains in my left side make me think part of the problem likely involves certain organs, though how they could have been damaged after that night of apparent cardiac distress remains unknown to me. Having done more research I’m really thinking the lower left pain has to do with my sigmoid colon (I can kind of feel it when I flex for a bowel movement). My best guess would be some sort of diverticular disease, as it fits best with my other symptoms (mucus in stool, recurring SIBO, discomfort after eating, etc.). Since it hasn’t gotten better after nearly a year I think a CT scan would be justified, but my doctors seem resistant. 29 is pretty young for diverticula, but my thought is that the mild chronic constipation I’ve always had might have hastened the process. It would also be nice to just have a picture at this point to rule out things like mesenteric ischemia. I don’t mean to complain as I clearly don’t have it as bad as some stories I’ve read, but I’m getting a little desperate for help and don’t seem to be getting anywhere with what I’ve tried so far. I’ve scheduled an appointment with a new doctor, though my current doctors are taking a lot of time to share my records. I’ve also scheduled some counseling in hopes of helping to rule out psychosomatic effects and better monitor my psyche (I’ve never really had much success with counseling in the past but I’m willing to try again at this point). Regardless, please let me know if you have any suggestions, ideas, references to similar cases you’ve heard, or anything else you think might be useful; I’d truly appreciate it.
  3. This small study suggests that taking probiotics may contribute to brain fogginess and bloating. While it may be good to keep the large intestine (colon) populated with healthy bacteria, taking probiotics in patients with impaired gastrointestinal mobility (e.g. diabetes, celiac disease) may contribute to issues like SIBO where the bacteria may populate in the small intestine instead. https://medicalxpress.com/news/2018-08-probiotic-link-brain-fogginess-severe.html Talk to your doctor about taking a probiotic. Consider modifying your diet to include foods that can help populate the large intestine (e.g. fermented foods), instead of taking a supplement.
  4. have Hashimotos hypothyroidism. was whole foods vegan for 5 years. in January I went to get blood panel ( because I couldnt digest properly and was having depression come back and weakness) and ldl was high and omegas low, decided to start eating meat again. for the last 6 months I've been struggling with hemorrhoids and possibly anal fissures. went gluten free once again (prior to all of this I had started eating gluten again for about 3 months) and mostly AIP and hemorrhoid has improved but not gone and still bleeds. if I eat certain things my stomach from below my belly button feels swollen, I thought possibly sibo but last weekend I ate pizza (not gluten free) and ever since then my stomach has felt super swollen . is this possibly just a gluten issue? It's not gas but literally feels like my intestines are swollen, and it lasts for days after eating gluten or other foods that I suspect had gluten contamination. The swelling typically only happens the next day or several hours later that night and lasts 3-5 days.
  5. Celiac.com 04/30/2018 - Rosacea is one of the most common skin diseases, and usually manifests as chronic inflammation of the eyes and the central part of the face. Rosacea is medically harmless, but it can trigger strong self-consciousness and reduce people’s overall enjoyment of life. For most people, symptoms of rosacea include flushing and erythrosis or reddening of the face. A small percentage of patients also get the formation of papules and pustules, with phymata. Doctors have posited numerous possible triggers, including hypochlorhydria, dysmotility, anatomic anomalies of the intestine, and immunologic causes. SIBO is an acronym for small intestinal bacterial overgrowth, a medical condition marked by an abnormally high concentration of bacteria in the jejunal aspirate on culture. SIBO is more common in people with rosacea than it is in the general population, and when SIBO is treated with antibiotics, skin lesions vanish in nearly 100% of cases. This remission lasts for at least 9 months in about 80% of patients. The same thing happened when unresponsive SIBO patients receiving placebo as part of a study were switched to antibiotics, so the evidence is very strong. It’s well known that numerous patients with rosacea have stomach and gut complaints, including dyspepsia, bloating, flatulence, abdominal pain of a cramping nature, altered bowel habits such as alternating constipation and diarrhea, and meteorism. It’s also not uncommon for rosacea patients have to suffer from medical conditions such as ulcerative colitis, Crohn’s disease, celiac disease, gastritis due to H. pylori overgrowth, lipase deficiencies, hypochlorhydria, and diseases affecting the small intestinal mucosa. Rosacea patients show a good response to a variety of antibiotics, including tetracycline or macrolide drugs, metronidazole, or chloramphenicol. The overwhelmingly positive response to antibiotics, coupled with the fact that many rosacea patients see symptom improvement when treated with drugs that speed intestinal movement, lends support to the idea that skin lesions have a bacterial origin. Still, evidence of bacterial role in rosacea has been far from clear. Some researchers suspect that rosacea lesions result from increased intestinal permeability in patients with SIBO, which in turn might lead to translocation or pro-inflammatory cytokine release. Earlier studies have linked rosacea with certain genetic variants in the genomes of rosacea sufferers that were strongly associated with the disorder, including genetic variants in or near the HLA-DRA and BTNL2 genes. Interestingly, these areas of the genome are also associated with autoimmune disease, including type I diabetes and celiac disease. Read more about rosacea and SIBO at News-medical.net, and at Rosacea.org.
  6. So I posted back in early February2017 about having some extreme brain fog, light headed, vision problems amongst other symptoms. I thought it was because I had started a strict gluten-free diet again (after eating carelessly for a couple months and being a celiac) and was possibly have gluten withdrawals or even cross contamination some how in my diet. I literally went to 3 different MD’s and even my Optometrist. And they all told me I needed to eat more and get better “quality” sleep. After a year of strict sleeping/eating schedules the symptoms never went away and it felt like this constant drunk state of going about my day. Finally I switched to a Holistic Doctor (I think that’s what type of Doctor he is). Anyways after the first appointment he pretty much knew what I had and sent my home with two take home tests. One for SIBO, the other for Adrenal Fatigue. I tested positive for both with extremely solid results. I always told myself I’d come back on this forum to share my info if I ever figured out what was wrong with me because no one seemed to know exactly what was going on and looked at me like I was some crazy lady making up stuff. I am one week on the Rx. and already feel so much better. My ability to communicate and focus in conversations is much better. I literally felt buzzed when talking before and it took way too much effort to really even stay on topic with people. And even if I did stay on topic I couldn’t remember hardly what was discussed. As of right now my vision is still slightly off, even though my optometrist said I have perfect vision. It’s more so like the room has a hard time catching up with itself when I redirect my focus. But my energy is up and I can only assume my results will keep getting better with each passing day. I hope this helps someone who’s trying to figure out what’s going on with themselves.
  7. Hello, I'm looking for a Gastro Psychiatrist or GI doctor who works with mental illness and would appreciate any recommendations. I've also thought about looking for immunologist who work with the gut microbiome. I live in Nebraska so a doctor in the Midwest would be ideal, but I would appreciate any recomendations! I struggle with anxiety, depression, and multiple food allergies. I've been gluten free about 6 months so I don't think I can be tested for celiac. I've been thinking about doing a gluten challenge to be tested, but out of all my food allergies gluten seems to make anxiety the worst. So, I'm not sure if its worth testing or just keep avoiding. While I've seen improvement in digestive and mental health symptoms since eliminating food allergies, I'm still struggling. I highly suspect I have immune related issues from dysbiosis as I was regularly put on antibiotics for sinus infections growing up. I have a lot of symptoms that point to Candida, histamine intolerance, or SIBO. It would be great to investigate some of these causes under the care of a physician. Any advice is appreciated! <3 Elizabeth
  8. Will being on a SIBO diet mess with a future hydrogen breath test?
  9. Hello guys this is my first post forgive the long post but my situation is complicated. I just got out of bed as I had to cause of Night Sweats, I hate them, I did go with my wife and kids to the centre of town (London) to see a chinese TCM doc and so we went to China town to a restaurant, its been cold also and the stress of the kids having tantrums I think sent me overboard. I must say though for 3 nights have had terrible night sweats BUT the previous 3 days I ate wheat and dairy which I usually avoid, I had ricotta cheese and Italian wheat bread, gluten free lasagna but has cheese/ and my wife made chinese food with soy sauce, chinese restaurant food. My symptoms are sneezing, roof of the mouth hurts and when I sneeze its as if Ive just torn a layer of skin or something from the roof of the mouth, night sweats, mucus in the mornings. I suppose the stress I have in my life doesnt help, Im lowering my medication (Paxil) and hope to reduce and stop Prilosec also as I believe it maybe the reason I have a damaged intestine or leaky gut seeing as chronic low stomach acid could allow bad bacteria to migrate from the stomach to the duodenum etc, low stomach acid food arriving in the duodenum doesnt have the acid trigger that you need to send a message to the pancreas to digest the food and so partially digested food feeds the bad bacteria, right? I also did coffee enemas for 9yrs daily an this may have damaged my duodenum/small intestine cause bile is released each time and bile is slightly corrosive? I stopped doing them now but not sure which diet to follow, Ive heard of FODMAPs diet, SCD (Specific Carbohydrate Diet), Mcdoughall high starch low fat/oil diet, Keto, low carb, Mediterranean. Im confused which diet to follow cause I have a few issues, fatty liver, gallbladder polyps, GERD/Hiatal Hernia, depression/Anxiety all diagnosed but the leaky gut, or Gluten intolerance hasn't been diagnosed, maybe I should get an allaergy test, I think I'll test positive even for water at least it seems this way, that my body is becoming intolerant to many foods and the list seems like its growing. I wasn't gluten intolerant from birth, this is what the Chinese doc said to me yesterday, she said I doubt if your Gluten problem started 4 yrs ago, usually people have it from birth, i thought what is she talking about, I', Italian and I ate mamas lasagna, spaghetti, bolognese, minestrone etc as Italians we ate a paste based meal everyday and this was for decades I ate wheat, I ate bread as well and processed foods, surely I would have known sooner and reacted sooner? I started reacting 4 yrs ago and intially was going nuts cause I thought I had dust allergy and thought |I was allergic to my home, to mold, insects, the air, I just didnt make the food connection, until I read about Gluten, then i started to avoid Gluten and started to eat Gluten free bread (took some getting used to), finally after 3 to 4 yrs some relief, now I cannot eat Gluten and even Dairy, sometimes I find sugar/stress and potato skins gives me auto immune problem symptoms like red hot ear (Relapsing polychondritis?) This is just my intro I have written a longer letter to give to a doc, but not sure which doc could help me, I will send it in a few minutes once Ive finished it, the chinese doc I saw says we cannot shrink the polyp and is too expensive with her herbs but will try for a few weeks to see if I feel better, the reason why I like the chinese approach is that they treat you whole-istically cause I have too many things going on for a one size fits all approach, one remedy or diet may harm or worsen another problem that I have. Thankyou guys for reading any help or advice will be much appreciated, thanks. Gerald
  10. I would like to share something interesting that happened to me. Maybe this story would help somebody that can’t eat food because everything is making you sick. I’m 2,5 years gluten free and little less casein free. I’m eating always home, cooking my own meals and eating 95% whole food diet. I had SIBO twice during that time. I had a positive breathing hydrogen test. I took 2 antibiotics the first time, and after proximately year- stronger one from tetracycline group. I felt much better after treatment, but only for a wail. I was able to eat more food without problem. I don’t know, if I have leaky gut, or my problem was just SIBO, but I was reacting to beans, lentils, peas, corn, soy, lettuce, broccoli, cauliflower, cabbage, Brussels sprouts and sweet - high fructose fruit (oranges, apples, pears, peaches) like to gluten. I also had problem with any type of jelly, juice, syrup, fruit in jar (I have fructose intolerance, but I wasn’t able to eat any fruit at all). I didn’t have diarrhea, but I had pain, I was bloated and I had very painful trapped gas. Gas-X didn’t help at all. Only thing that helped was digestive enzymes right after food. I took Pancreolan forte (in Slovakia) which is Pancreatin in the USA. I took probiotics for some time, but I had more pain in the intestines and in stomach, so I stop using them. I got to the point that I was reacting to everything. Only water and plain rice didn’t bothered me. But who can live on that for a long time? Then something eye opening happened: A week before Hurricane Sandy I had pneumonia. I was put on amoxicillin/clavulanate potassium and later on Azithromycin. During that time I was able to eat anything without any digestive issues. I enjoyed it. I didn’t have pain or bloating. Does this mean that who have a problem with food intolerance, maybe with leaky gut too, have just bacteria overgrowth in the intestines instead? Antibiotics kill the bad bacteria in mine and I stop having a problem with food. I know that SIBO can come back. I started taking probiotics again in mild doses. I can still eat problem food in small doses without problem. If I will combine more things during a day (minestrone soup for lunch, corn with dinner and orange for evening snack), I will have very mild bloating. One more thing: When I had the breathing hydrogen test, the technician waited 2,5- 3 hours after I drank some liquid for the final peak in reading. She told me that the liquid is now in the intestines and now we will see how I will react to it. After this test I started to notice pattern. When I ate something like soy, cabbage, orange, etc. I had bloating always 3 hours later when the food from my stomach went into the intestines. Now I test myself this way, when I want to find out what I’m “allergic” to. I will eat something and three hours later I will find out, if I’m intolerant to it and how strong my intolerance is. Any thought?
  11. Hi friends, I know there’s other posts about Rifaxamin here. I’m writing mostly to share and vent, and wondering if anyone has updated experiences. Long story short: (long story here) somewhat unresponsive celiac disease after years of lax diet. Still symptomatic and somewhat inflamed after 1.5 years of extremely careful diet. They cultured some small intestinal juice during my last endo, and guess what? Bacteria! So I’m on day 3 of a 7-day course of Rifaximin/Zaxine 550mg 3x/day. I knew to expect success or failure (or both) in equal measure…I guess I didn’t anticipate more symptoms DURING the course of meds. Periods of intense nausea and mild D over the last few days. Also gas and mild-moderate cramping. Hard to separate from my usual symptoms, because nausea has been my primary issue, though D has not. However I suppose gas has somewhat improved from before. Getting the trots scares me...for no better reason than what I suppose many of us have to think: whether it signals a flare-up of inflammation, etc. I’m disappointed that things aren’t magically better having begun the antibiotic treatment, though I am trying to keep in mind that of course antibiotic-associated D is most definitely a thing, and more generally, the fairly high dose of this drug is certainly blowing away all the good bacteria with the bad. I know that I need to wait till the meds are done and things settle to see if this treatment did anything; if bacterial overgrowth is indeed a prime mover in my situation. But it’s frustrating that the interim sucks, and the 4 days remaining on the drug are going to go slowly. Anyone else go through antibiotic/sibo therapy lately? I could use a head-nod for the above. Thanks for your time, and best wishes, J
  12. I am pretty desperate to just hear from anyone with a similar experience whether it be a parent of a child or an adult experiencing symptoms themselves. Our daughter was diagnosed with Type 1 Diabetes last April. We had her stool tested with Entero Lab which showed extreme gluten intolerance with a plethora of other food intolerances. She also tested positive for both genes associated with celiac. This summer we noticed a bloated belly show up accompanied with an increase in hunger. She did have a rapid weight gain post diagnosis which isn't uncommon due to the drop in weight prior to her diagnosis. I've always been interested in reading about healing foods, I had the GAPS book, Autoimmune Protocol, Amy Myers, etc books before my daughter was even born. She's always eaten an extremely healthy diet with fermented foods, no processed, gluten free since 2, etc. and yet, despite all of that, she tested positive for Sibo in December 2015 after working with a pediatric gi since September. I'm distraught. She's going to be 4 next month, she has a bloated belly, slightly overweight now, fatty stools, gassy, hungry ALL the time (even after eating), and she doesn't seem to be getting any relief. We've done 2 rounds of Flagyl followed by bio Gaia probiotics, but it doesn't seem to be helping. Thoughts? Anyone experienced anything similar? I cannot believe my 3 year old has everything I've tried to avoid with nutrition(leaky gut, autoimmune condition, Sibo, etc) how did this happen? How can I fix it?
  13. Hello, To provide a brief summary of my story, I am a 24 year old male with no previous stomach issues until recently. About 3 months ago after being very sick with a fever and being on antibiotics I came down with a cdiff infection, which I then took several antibiotics to cure. My GI doctor performed both a colonscopy and endoscopy during this time to see what was going on and found no inflammation or any indication of a problem. I started to become very frustrated with this doctor because I still had tons of symptoms I have never experienced before both stomach related (diarrhea, acid reflux, stomach pain) and systematic issues (freezing hands and feet, rashes, body aches, insomnia, depression). He refused to listen to my complaints gave me the all encompassing "IBS" diagnosis and sent me back home with antidepressant pills (which I hate and stopped after 3 weeks). I needed more answers, so I saw a second GI Doctor. This GI Doctor was great and said my problems shouldn't just be dismissed as IBS. She said my symptoms sound alot like Celiac and/or SIBO. Low and behold, I received a series of blood tests and my TTG-antibody was low positive. My hydrogen breathe test was also very high. I showed this doctor my previous endoscopy report with clear biopsy, so she suggested we repeat a biopsy to see whats going on. She also prescribed RIfaxamin for the SIBO. To fast forward to today, I have been taking the Rifamaxin (now day 5) and really feel no different. I have dabbled in different diets (low Fodmap, low gluten) and supplements (glutamine, digestive enzymes, probiotics) and little as changed. The doctor said I should NOT start a gluten free diet until biopsy report comes back in two weeks. My question is twofold: What would be the doctors reasoning for not starting gluten free now that i have received blood test and endoscopy? Also, if this biopsy is again not indicative of celiac (my big fear) what is my next step? Can I still be celiac with a low positive TTG, which I have heard is pretty accurate and specific unless I have a different autoimmune issue? I have already been tested negative for almost every autoimmune disease so I dont know what else would cause a positive TTG. Any help/insight would be greatly appreciated. Thank you!
  14. So after being strict paleo for almost 6 months after my celiac diagnosis with no relief, I finally found my answer I took a breath test for small intestinal bacterial overgrowth today and it cmd out very, very positive. The doctor was able to tell me it was positive not even half way through the test! There's a very large amount of methane, which explains my severe bloating, gas, and constipation that's been worsening every day since going gluten free. I was so happy to have an answer I burst into tears, while simultaneously cracking up and hugging the nurse who told me it was positive (whom I'd just met that hour…) Needless to say, this was the best news I've ever heard. I finally get to have a life again! I'll get to go out, eat normal amounts of food, wear tighter clothes again without having to worry about my swollen gut showing lol. I'm pretty much ecstatic!!!(: Now my questions are….well, what do I do now? Is there anyone else who experienced this? Not getting better after going gluten free then finding out SIBO's the culprit? My doctor prescribed me Rifaximin twice a day for 10 days and then Neomycin twice a day for another 10 days afterwards. But she also mentioned that a large amount of methane as opposed to hydrogen in the intestine is harder to treat and less common /: (with my luck) This scares me and makes me feel like I should be extra careful. Is there anything else to do to kill off the bacteria? What probiotics would be good for helping to treat sibo? I already take Acidophilus but is there one that would work better? WHat about diet? I know the bacteria feeds of sugar and carbs? What sort of diet it recommended when treating SIBO, if there is any? And most importantly.. did this simple fix, the antibiotic, cure your ongoing symptoms? I feel like in a way it's too good to be true. I've been living in unbearable constant pain from the time I wake up till I go to bed for so long I feel like I've grown accustomed to it! Could this really be the end? Support is desperately needed here. Thanks everyone!
  15. I wanted to drop back in and pass on what i've learned in the past year and a half since i started this "what's wrong with me?" journey. I thought I had food allergies/intolerances all my life - diarrhea when I eat has been my companion for 45 years. Digestive enzymes and probiotics have kept me alive and able to eat for the past 20ish years. The post with most of my story is here: http://www.celiac.com/gluten-free/topic/99411-i-think-youre-my-people/ Nov 2012 I was tested for the celiac gene and antibodies. In a lab error, my blood sample was sent to 2 different labs - Prometheus Labs and Peace Health Labs. Prometheus Labs developed the tests, by the way, so are considered to be the most accurate. Everything from Prometheus came back negative. The Peace Health labs were all negative, except the anti-tissue transglutaminase came back as a weak positive. I went gluten-free (100% and I am confident about that, right down to shampoo and toothpaste) for 7.5 months. No change in my digestive woes. Not worse, but not better, and my face was still breaking out (i'm in my 50's.) After 7.5 months, I went to oregon's premier research hospital in Portland and saw 2 gastroenterologists. They said I didn't have celiac disease, that if i had, i'd have begun to see improvements right away. Instead they said I had IBS - which was the first time any doc had told me that. Months passed and my youngest daughter's (20ish) digestive problems got worse and worse. She saw a naturopath, and in the course of her visits told her doc about me. The ND said it sounded like I had SIBO - Small Intestine Bacterial Overgrowth. I read about it on http://www.siboinfo.org and thought it sounded like me. I went first to my primary care doc to ask for the SIBO test, who sent me to a gastroenterologist, who said i absolutely didn't have SIBO and that i had a gut that "ran fast" just like some people's legs run fast. He also said if i'd had diarrhea for 40 years statistically, it wasn't going to go away. that was helpful, of course. I said "I'm not dead yet" and decided i wasn't done looking for answers. I made an appt with my daughter's ND 2 hours away in another town, was tested for SIBO, and it came back positive. I took Rifaximin for 2 weeks, then started the low FODMAPS diet to starve any bacteria that remained in my small intestine. I'm on week 6 of the 12 weeks I need to be on that diet. I'm also taking low-dose-naltrexone (good reports on healing the gut with crohn's disease) and several supplements to help heal my intestines. That treatment all started 8 weeks ago. I've now been able to eat the first two foods that i was ever allergic to. I have bacon every day - that allergy developed when i was 9. I have had 5 oranges now - and i've been allergic to them (i thought) since i was 15. Everything says that this is working for me. All the evidence is that my gut was damaged by bacteria being in the small intestine, where it isn't supposed to be. Now that the bacteria is gone from there, my intestines are healing, which prevents food particles from leaking through my gut into my body, creating an allergic reaction. I'm afraid to hope that it's going to be a cure for me, but the evidence says it might. I woke up on day 7 after starting the antibiotic feeling the best I have felt in 40 years. It was amazing. I'm wanting to share this in case others of you, like me, don't get better on the gluten-free diet. If that's you, or it helped but doesn't eliminate all the problems, i hope you'll explore the possibility you have SIBO. it's a simple breath test to tell you if you have it. You can even order the test yourself, from Commonwealth Labs in Boston, and they will send you the results. For $175 you might get an answer. If a doc tries to check you for bacteria using a stool test, insist on the breath test. You can read on the siboinfo.org site why that is the only test that works to check if you have bacteria in your small intestine. It is also possible to have BOTH celiac and SIBO. People with IBS have constipation and/or diarrhea. The SIBO test measures for hydrogen (which is put out by some varieties of bacteria) and for methane (put out by other bacteria.) If you have hydrogen gas-producing bacteria, you have diarrhea. if you have the methane-producing bacteria, you have constipation. Methane has been shown to slow down gut motility by as much as 70%. You can have both types of bacteria. There is also a suspected link between the endotoxins produced by the bacteria in the gut and Fibromyalgia. I don't have it, but i did have a fair amount of muscle pain - i just thought i was getting achy but i didn't know why. When i took the antibiotic, the muscle pain stopped. i used to go to the chiropractor all the time because my neck would get so tight and hurt - and it's completely stopped. no more aches! My youngest daughter turned out to be negative on the SIBO, negative on parasites but positive on yeast overgrowth. She's now started treatment for it and we're hopeful for her too. I have never gotten the help i needed for my gut from conventional medicine. This naturopath, however, has turned into a blessing in my life and now, i'm offering this as hope to the rest of you. If you aren't getting completely better on your gluten-free diet, look into SIBO, parasites and yeast. I'd recommend the SIBOinfo.org website, the book by Dr. Mark Pimental "A New IBS Solution: Bacteria, the Missing Link" is about SIBO, IBS and why some things improve your gut but don't cure the problem. A good companion book is by Elaine Gottschall, "Breaking the Vicious Cycle." It was about 20 years ago that doctors discovered that stomach ulcers were caused by h.pylori. Prior to that, docs thought they were because you were a type A person, told you to drink milk and calm down. Then they discovered the h.pylori bacteria and ulcers became treated with an antibiotic. Now, research has shown that many of the people with IBS diagnosis have bacteria in their small intestines, where they shouldn't be, which is called SIBO. Rifaximin is the antibiotic that is best to treat it. It's a hugely expensive AB ($1,025) but my co-pay for the whole 2 weeks was $35. Hopefully, some of what i've included here will help someone else. Wishing all of you the best! Please post if you have questions - i'll check back by and try to answer any.
  16. I'm going to try to summarize this to keep ti short - please bear with me. I haven't had issues consistently for my entire life, but did, as I was gowing up, have a few instances of diagnosed 'COLITIS' Nothing really was thought about that - and maybe it's normal - I went to the doctor less than 5 times i think forthis particular thing up until I was about 18, but thought I would mention it. Fast forwad to last year. Severe stomach pains - double you over type pains - but no diarrhea or constipation, just felt like I was hit in the gut with a baseball bat, and I would walk hunched over for a few hours until it would pass. This was an off and on thing for a few weeks - but each boutonly lasted a few hours. I saw a surgeon and a gastroenteroligist, and neither of them really did much. I had an endoscope, but aside from finding polyps in my stomach (not colon) and a very inflamed stomach, nothing. Dr. prescribed Hycosomine, which I took and hated the side effects - for a few days as that is all I could tolerate. I think it helped at the time (it was for stomach spasms) - but I just am not sure that is my real issue. I do notice spasm-y type feelings, but it doesn't seem a cause of the issue so much as a side effect. Now fast forward to about 3 weeks ago. I had found out I had miscarried again - this is my 3 rd time - and ended up having a D&C, and kind of burying my grief in food. Junk food. Fast food. yuck. After a few beef sticks one day, I noticed my stomach was hurting. I didn't pay much attention, and can't tell you what I ate after that, but the stomach pain progressed and became nearly unbearable. I ended up taking pain killers for 4 days because I couldn't move without being in signficant pain. It felt like the pain was moving downward - albeit slowly, and moved gradually from my stomach area, down to a few inches above my belly button. This is where the pain centered last year too. The pain seems to settle right above the belly button and stay there. no matter what - ti's ALWAYS tender there. The tenderness is in varying degrees - can be just if you press on it, or have you doubled over in tears. All this said - i don't have diarrhea or constipation as a rule. I had one day of diarrhea in 3 weeks, and maybe 2-3 of constipation but I think the latter was because I was eating NO fiber with the stomach pain because I didn't want to aggravate it. One of the 'attacks' or episodes hit the hardest, when I thought I was getting better, and was HUNGRY (after not eating much with the pain) - and sat down to 2 bowls of generic 'TRIX' cereal with almond milk. about 30 to 60 minutes later, I was a mess. Crying and doubled over, and my 5 year old went running crying to my husband, scared to death. So - researching my fool head off - I am beginning to think I have SIBO - and or possibly Celiac - but I don't have the Diarrhea or Constipation issues. So I just don't know. I also am not losing weight. I am frustrated with my GASTRO because he didn't test for either ofr these and I would think ith my symptoms he should have. I also have noticed lately (though this is probably unrelated) that my fingers have been very itchy - especially after I have them in cold water. That seems like mild allergy thing, but it must be food related as nothing soap wise has changed. Anyone able to help at all with this? Since I dont' have the diarrhea or constipation - am I way off base?mayb Maybe it is food allergies causing it - I am just so lost
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