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I know it's terrible. But everything I eat makes me feel sick or worsens other symptoms. Everything. Plain boiled chicken, bananas, cooked carrots...I've had a really simple, unprocessed diet for awhile and it doesn't seem to have helped anything. But when I don't eat or I eat very, very little I have so much less pain. Even my fibromyalgia feels better! I have had a stabbing LRQ pain for five years that no one has been able to diagnose that flares up when I am active or sometimes just at random, and it fades to basically nothing when my stomach is really empty most of the day. I was actually able to jog for five minutes yesterday, which sounds like nothing but it's a huge step up from having to stop after 20 seconds from stabbing pains. I just feel lighter and that constant stomach pressure I didn't even realize was there disappears for awhile. No one has been able to diagnose my stomach issues, and when they can't figure it out they just send me away with no answers or suggestions of things to try. My celiac tests all came back negative, but I am still completely gluten-free, including avoiding CC which has helped somewhat but not enough to allow me to function normally. None of my doctors have listened to me, and I can't get a referral to see another one for a little while still. I feel like I'm in limbo. I know this is no good. I just don't really know what to do about it.
I need advice on the best next step for me. I'll try to make this short. I have been sickly pretty much my entire life, had terrible stomach pain and constipation from age 5 on, started getting autoimmune-ish and mental symptoms at 13, been all downhill from there. I was gluten-lite (an uneducated attempt at gluten-free, no avoidance of cc whatsoever and didn't always check labels) for two years starting in 2010 at the suggestion of my then-doctor. In September 2012 I had my levels checked for celiac- total IGA (62, normal range 70-380) and ttg IGA (<1.0, normal range 0-3.9) and IGG (1.0, normal range 0-5.9), which my doctor interpreted as negative. I asked her about both the fact that I had been avoiding gluten for two years and that I seemed to be slightly deficient in IGA and she brushed both off and said that it would 100% have shown up if I had celiac. I got a referral to a gastro who put me on a gluten challenge for two months, during which time I developed fibromyalgia, RLS, gastritis, retriggered my anxiety, OCD and depression, and had such severe derealization I lost the ability to differentiate between dreams and reality and was borderline suicidal. I had an endoscopy/colonoscopy in December and later found out the gastro only took four samples from the duodenum, all of which were negative. She basically shrugged at me and said, "I dunno" and sent me on my way. I had gone back to gluten free the day of my scopies and I felt much better within the week. Unfortunately, I had been feeling so bad that 'much better' still translated to 'barely functioning'. The fibromyalgia did not start to improve for two months, and I was bedridden for most of that time, and it still has not gotten good enough for me to exercise the way I was before. I am still trying to recover from the major setback of my mental disorders. The gastritis has not healed and I have had to seriously restrict my food options which has led to a 15 pound weight loss and a retriggering of disordered eating. My rosacea is ocular now, my derealization is still too bad to drive, I'm so exhausted I constantly zone out yet I have trouble sleeping at night, I keep getting mystery illnesses and I can't tell if they are my body fighting itself or viral, etc etc. I've been in to the doctor so many times for so many different things in the past four months that all the nurses know me by sight and name. I am on a gluten-free diet and do my best to avoid cc, but I live with my S.A.D. parents and siblings who think I'm being 'crazy' and therefore overreacting, or are so set in their habits and ways that they simply won't try to accommodate me. My mom is the only one who tries, but she is always so exhausted from work that she is forgetful as well. I do try to be careful, but honestly with the depression and fatigue I probably don't do a perfect job. I'm hoping that if I can get a real diagnosis people will actually take me seriously and at least try not to add to the issue. Most of them also have similar health problems- chronic stomach issues, fibromyalgia, anxiety and depression, thyroid issues, bad bloating, etc., and I think if I can get a diagnosis I will be able to persuade the sicker ones to at least get tested too. And I hate to sound whiny, but I do feel like mentally I need a diagnosis of something. I keep doubting myself, wondering if I AM just being crazy, or if maybe there's something else and I'm completely wrong about the gluten and obsessing over the wrong thing. We have a family friend with celiac who said the endoscopy couldn't have been viable because it wasn't a long enough trial, and that I needed to do the Enterolab testing for the gene and other food reactivity tests. I don't know about that either though, are those actually accurate tests? I'm just getting so tired and overwhelmed, I don't see how I can ever know if I feel bad because I'm not doing a good enough job avoiding gluten or if there's something else wrong with me that all the doctors have just missed so far or if it IS all just in my head. I feel like I'm losing my mind all over again!