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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About masterjen

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    Advanced Community Member
  • Birthday October 06

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  • Gender Female
  • Interests working out, being a personal trainer, audiology work in an ENT clinic, anime and video games, reading, drawing and sketching
  • Location Vancouver, B.C.
  1. Hi - you may want to look up something called myoclonus to see if this fits your symptoms.  I had this, but it is now controlled with medication.  I still have minor hand tremors but not the spasm/jerking you're referring to.  I was diagnosed with celiac 5 1/2 years ago and the myoclonus did not improve despite being 100% gluten-free.  The spasms and jerking were interfering with my sleep as well.  Do you get them in your sleep also?
  2. Very true, that training in gluten free practice and actually carrying it out are two different things.  I have always believed this as well.  I have had celiac now for 5 years, and have yet to eat out in a restaurant that is not dedicated gluten free (and even at that only twice since it is not in my home town).  Good to know that Udi's Pizza kit is what Pizza Hut uses, and therefore I assume it's pretty good.  I'll just eat at home when a pizza craving hits!
  3. I just saw the article saying that Pizza Hut is now making a pizza that is certified as gluten free by the gluten intolerance group.  This is confusing: is it or is it not safe for those with celiac disease?
  4. Other intestinal conditions can have symptoms similar to celiac disease, and also improve somewhat on a gluten-free diet.  Two such conditions I know of are colitis and eosinophilic esophagitis (my spelling is probably a bit off).  If the biopsy is negative, make sure you Dr. pursues alternative diagnosis so you can get the proper help.
  5. I developed lactose intolerance after going gluten-free as well.  I too, would like to know of any medical explanation for this, esp. when my last endoscopy showed the vili to be back to normal.  I've heard other people say they have developed other food intolerances after going gluten-free, too.
  6. What I was told by my gastroenterologist about eating before the test was to eat even more gluten than usual.  The reason given is that some endoscopy results can come back equivocal and if someone truly has celiac, even just a few days of pouring on the gluten can cause even more reaction from the damaged intestine to take place.     An addition to what the above poster said: post-biopsy also make sure your daughter uses gluten-free toothpaste/mouth-rinse, if she uses lip-gloss make sure she uses one that is gluten-free, she is still young and may still inadvertently swallow shampoo when you wash her hair so you may want to use gluten-free shampoo on her hair. . . . Anything she might ingest even accidently should be gluten-free.  At this point you don't know just how sensitive she is to gluten, so my personal belief is to err on the side of caution.
  7. This is a REALLY old topic now, but for anyone who lands here searching for PB info. thought I'd add that MaraNatha peanut butter is also gluten-free and absolutely delicious!
  8. Something Really Scary Has Happened

    I was thinking about the recent follow-up I had with the neuro., and he suggested that the seizures I have are not classic epileptic in nature, and that what might explain the symptoms is some form of dystonia. I put this out of my mind until recently, and when I googled this I learned that there is a form of this that is debatably a form of epilepsy (debatable, because often EEG and MRIs are normal in spite of seizure-like activity) and in which the "seizures" occur during non-REM episodes of sleep or that phase of almost-asleep (when mine have occurred), and become worse with fatigue ( as mine do). There is one type called paroxysmal nocturnal dystonia, that sounds unusually close to what I've been going through. Anyone care to comment? Anyone know anything about this??
  9. Something Really Scary Has Happened

    Thanks, gabby - I really appreciate you taking the time to tell me this!
  10. Something Really Scary Has Happened

    A med. I was initially taking for about 2 weeks was clobazam, which worked minimally to control the seizures. Once in the hospital I was initially given IV dilantin which was then switched to oral, but after 5 days on this I was so out of it: visual disturbance called nystagmus when I looked in a particular direction, very uncoordinated walking (in fact for the 2-3 days I was on IV dilantin I was bedridden and had the joy of using badpans ), and difficulty thinking and memory difficulties (sometimes people came to see and I carried on conversations, but have no memory of the visitors, or if I remember the visitor I can't remember the conversation, and many regular occurrences within the hospital on that drug I don't remember (meals, bed-pan time, sponge-baths, etc). So, needless to say, they took me off that drug after a 5 day attempt to stabilize me on it, and put me on clonazepam, which has worked very well to control the seizures both in and out of the hospital. The only troublesome side-effects with this one are mild-to-moderate fatigue, and only a mild sense of being "out-of-it". If anyone can add their 2-bits to this based on experience, I'd really appreciate it. No further answers from the neuro. follow-up visit, which is frustrating, but he isn't giving up on me, he said, and is interested in getting to the bottom of it all.
  11. Surviving A Hospital Stay

    Hi, mushroom; Glad to hear you survived your hospital experience. When I was cooped up in the hospital for 2 weeks recently, I ended up having to have my mom bring in all my meals. The hospital cooking staff tried, I'm sure, but in my case it appeared they had little to no knowledge of the effects of cross-contamination. The food itself was gluten-free (breakfast was usually an egg with gluten-free toasted rice bread; lunch was canned fruit, broth, gluten-free crackers or non-toasted gluten-free bread, and dinner was plain chicken breast, sweet potatoes or rice and veggies, for ex., which is technically no different from what I've been eating at home) but after getting sick twice in a short period of time on food that was itself gluten-free, I realized cc was likely the problem. It's sad that not even a hospital can properly handle special diets.
  12. Something Really Scary Has Happened

    Sorry for being out of touch for awhile. The neuro. put me in the hospital for 2 weeks: what a nightmare - boring as heck, and got gluttened twice on the hospital's so-called gluten free menu (cc, I'm sure), and after the first few days had my mom bring my meals in for me. I was in two different locations in the hospital: in the first, the nurses were very attentive, came as soon as I buzzed when I was having a seizure, described in their notes exactly what occurred, and even sometimes held my hand through the whole thing. When I got moved about a week later to another floor, I buzzed (as I was supposed to, for proper documentation purposes), and sometimes the nurses wouldn't come at all, or came 15 min. later (when it was all over, and asked why I buzzed them), and usually documented nothing except "patient reported that . . ." so nothing was officially witnessed, as was one of the original focusses of the admission). It wasn't like I was buzzing them often - perhaps 1 or 2 times per day, as I was being trialed on meds by that point. EEGs and MRIs were normal - while I'm glad nothing serious is going on, it is still a mystery as to what has caused them, and the neuro. agrees. I still can't help but wonder about a celiac connection. The seizures are now 90% effectively controlled with medication ( they tried me on a couple while in was in the hospital to see what stabilized me the best and had the least side effects). I was released last Friday, and I see the neuro. again tomorrow to find out the next step. I am still affected by extreme fatigue and incoordination (some of which may be med. related, I guess). Now this going gluten-free stuff is a piece of cake compared to everything else - lol! Thanks for the caring comments and interest. Will keep you posted.
  13. Something Really Scary Has Happened

    I'm "willing" the phone to ring with the results (should come in today or tomorrow). The anxiety and nervousness waiting for the celiac test results was nothing compared to this I know "patience is a virtue" (or whatever that saying is), but whoever came up with that was not waiting for test results at the time . . . .
  14. Something Really Scary Has Happened

    Didn't get electrocuted during the EEG (lol). Interesting experience; some minor version of shaking/seizures were triggered, so I hope this means there will be some answers (had to breathe following a certain pattern for part of the test, look at strobe lights in various patterns through closed eyelids, and open and close my eyes in a certain pattern for another part while readings were taken. Hoping for results tomorrow, but might not come in until Monday or Tuesday. Again, thanks to everyone for their support and good wishes - will keep you posted.