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About billy

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  1. thank you for your replies! i can't believe how familiar they all sound to my own story. i'm still on the diagnosis road for my progressive proximal muscle weakness that started about 10 years ago. luckily i was always an avid athlete, so i had a lot of muscle to start with, like some of you. diagnosis guesses have ranged from ms to lupus to cp to md. i wasn't diagnosed with celiac, but instead ibs with gluten intolerance, so i have a hard time believing the gluten i'm eating could be wreaking this much havoc on my body if i don't have the autoimmune reaction. one neuro even thought the gluten could be causing me to slur my words, which happens when i'm extremely tired. i have other health issues, so i think i'm just one of those lucky people with more than one thing going on. anyway, thanks again for replying with your neuromuscular stories. i hope you're all recovering and feeling stronger!
  2. has anyone suffered or is suffering from a neuromuscular disease as a result of or in addition to celiac or gluten intolerance?
  3. oats and amaranth bother me, not as bad as gluten, etc., but enough not to eat them for a long, long time (i'm gluten intolerant).
  4. it's nice to know i'm not alone! thank you for your take on the two. the consensus seems to be that both cause the body to react in a negative way. now why couldn't my gi doc have told me this??? i think i know what i have to do... thanks for the post! wow, sorry to hear about the effect it had on you. do you know if the gluten attacks the central nervous system too? i have unexplained neuropathy (just about everything i have is 10+ specialists always say i'm a challenge...not exactly the words you want to hear from a specialist). i'm wondering if my whole body is screaming for help because of this. hmmm. thanks for the comment!
  5. sometimes i'm gluten-free, sometimes i'm not. i'm one of those stubborn patients who need to hear a diagnosis with the positive test (i was negative on both) to start the therapy since the doctor thinks i'm fine. but i obviously have all the gi symptoms and other weird reactions (instant stomach pain, headache, fatigue, etc.) after eating gluten and i know i should go completely gluten-free... my calcium and vit d were normal at last check; in fact, up until a month ago, my kidneys weren't filtering the calicum at all, causing kidney stone disease. but my magnesium has never been tested. anyway, thanks for your insight. i appreciate the candid advice! i will definitely read that book, thank you! i'm actually being tested right now for ra and lupus (i believe the latter started rearing its ugly head about seven years ago when all my health problems started). i will also share this with my doctors and my father, who is arguing that the intolerance isn't as bad as and is completely different than celiac disease. thank you!
  6. i had a biopsy and blood test about 1.5/2 years ago, which came back negative (i believe because i had been gluten free for months), so my gi doc told me i had ibs with a gluten and dairy intolerance. i think i have asked this before a while back, but this is still confusing to me: is there a difference between celiac and gluten intolerance? i have an endo who still swears i'm celiac due to some other health problems (osteoporosis, arthritis, can't gain weight, etc.); however, i haven't shown vitamin deficiency either. should i ever be retested? thanks...
  7. thanks for your comments. my gi doc is doing the colonoscopy next week. i've had the endoscopy (negative) and the blood work (negative), but i have two endos who think i'm celiac with all my symptoms; one says the labs aren't 100% fool proof and the other endo said my gi doc needs to biopsy the colon too (i wasn't sure if that's routine in diagnosing a celiac or not). they're also looking for chron's or colitis, so who knows...i just know gluten and dairy make me feel horrible and make it impossible to gain weight (i have women who say they wish they had that problem and i always say they'd end up spending half their lives in the bathroom!).
  8. has anyone heard of being tested for celiac disease in a colonoscopy?
  9. i'm 5' (used to be 5' 1/2" but am shrinking from severe osteoporosis). i haven't grown since i was 14 or so and was always the shortest one in class. my brother is 6', my dad is 5' 9", my mom's 5' 5". i think i got the short end of the stick.
  10. my gi doctor also said i had ibs and was probably gluten intolerant because my biopsy and bloodtest were negative; however, i have two endos who believe i am celiac because of my symptoms, which range from the typical gut reaction to neurological and beyond (my grandfather also suffers from "gluten intolerance" and a close-minded doctor). my one endo said the biopsy should be taken from the colon instead of the intestine and the other endo said that labs can easily mess up the who knows?!
  11. It's mentally comforting to hear everyone's responses. I've been fighting this phantom celiac disease for the past four years...taking myself off gluten, putting myself back on, taking myself off again. And when I finally got sick enough to go to a specialist, all tests come back normal. Just today I had fajitas and cake thinking "I'm not a celiac" and now I feel horrible. It's hard taking something out of your diet (especially when there's not much there to begin with...I'm a vegan) when a doctor can't tell you what's wrong. What a frustrating thing! billy
  12. Anyone out there diagnosed with IBS or another GI-related disorder instead of celiac disease when you thought you had celiac disease? I recently had a biopsy that came back normal, so my GI doc is going to look into other disorders. I've read wheat can be an IBS trigger food, but I'm just curious to see if anyone else had "text book" Celiac symptoms with no positive diagnosis. Thanks for your stories. billy
  13. how accurate are blood tests? i just had my second negative test in two years even though i've tested myself through trial and error over the past four with textbook symptoms (i do go see my first gi doc in two weeks). has anyone else had negative bloodwork with a positive biopsy? thanks, billy
  14. thank you for your opinions! i'd say i'm about 50 percent gluten-free now (it's hard being a vegan with the intolerance). i'm not sure how knowledgeable this specialist is on the disease (i hope very, especially since i've had such bad luck with docs in the past). my appointment is in two weeks, so i'll continue with my current diet (and unfortunate consequences) until the next step. thanks again! billy
  15. what is the consensus on going back on gluten before visiting a gastroenterologist for diagnosis? this will be a first-time visit, so probably no biopsy at this point. i was tested negative two years ago with the blood test, which was taken while i was gluten-free. just curious...thanks! billy