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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Ellette

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  1. You know, I sometimes think it might just be simpler to lump me into the insane category and commit me into a padded room so long as they give me lots of things to keep myself occupied with. Problem being that I have lost much of my fine motor control through epilepsy and one of my favourite things to do other than my photography is paper work...and I have fits doing that anymore. Maybe I'll go back to doing pastels and oils and just kill off more of my brain cells so that I don't even know I'm locked up. *sigh* I swear, I never smoked or did drugs, and I didn't drink alcohol till I was WELL into my 20's because I was one of those prudish kids and I wanted to make sure I didn't do any damage to my body. Fat lot of good that did me. You'd think that they could test for an allergy if they know it is there for goodness sake. Sort of like "Umm, there is an elephant in this room, but we can't look for it...sorry". Very odd and annoying! I don't much like cooked bananas, I frustrate my husband and sons in fact because I like my bananas slightly green. Wonder if green would have the same effect though as cooked...pollen doesn't bother people before it is "ripe" you know. Just a thought. Sara
  2. Wow, that is so interesting! Ok, I think I may have to have my husband make a bit of a cloud of flour around me. Not sure that would really work though, my heart would probably be elevated because I'd be nervous. Not terribly helpful that, testing myself for something and I know I'll end up creating a result I would get for one of the answers whether that is the actual answer or not. Maybe I can get him to sneak up on me one of these days. If I'm trying to do it as an experiment I may get nervous and elevate my heart if I walk down the baking aisle even. I want to be scientific about it. I wonder why the reaction started for you after you went gluten free. Do you know? Do you only feel it in your vocal cords or do you feel it down in your lungs too? I never can do things normally. I've got epilepsy, but heck...the neuro that is considered the best in our state has told me I'm "interesting"...I can't even do epilepsy right! It wouldn't surprise me if I had something else that would make doctors look at me like I'm a freak of nature. We have to do our part to help them buy bigger boats don't we? I was tested when I was about 10 and was found to only be allergic to one type of grass, and sheep. I know I've developed more allergies since then because I've got seasonal allergies now and tested positive for bee allergies before I went to Albania to work in an orphanage back in 2000 (didn't think a third world country would be the best place to find out that allergy). Plus there is the gluten, duh. I have been tested for asthma because of how often I got bronchitis before I got my epilepsy under control oddly enough. I know I don't have that. I will look into it. My doctor I have isn't great about not going for psychosomatic, but is fine about giving referrals if you ask for them. A scope is VERY VERY scary to me. My best friend went to one of the gastros here (which thankfully I was able to avoid needing to have a biopsy so I didn't have to deal with that) and she ended up with her throat all messed up because of it. Very interesting that it happens to you in the baking aisle too. I KNOW it isn't psychological. It came as quite a surprise to me both times it happened when I was around the baking (especially since I didn't see the baking going on till I had the reaction), but after the second time in the baking aisle it didn't surprise me that I felt bad the next time I went, and then I didn't bother going in there again. Thank you, Sara
  3. I was at my parent's beach house with my mom, my kids, and my husband for some vacation time. I had lugged my own pans, dishes, silverware, and food with me which I was keeping separate from the food of the rest of the family. Well, my mom decides to make pancakes for my kids. I walked into the kitchen after she had just finished making the dough and breathed the flour. I didn't realize at first that she was doing that because of how the house is set up. Because of that, I didn't know what was wrong, just noticed my lungs were hurting and my throat felt tight. I left and went to another room and sat by the window trying not to panic and then made my husband take me out of the house and drive me around till I could breathe better. I'd had this happen once before since going gluten free, and eventually realized what it was. As I thought about it I remembered having the same reaction when she'd baked something around me a while back. The reaction was exactly the same...throat closing down, and my lungs hurting. It is a bit freaky! I actually get a mild but similar sort of feeling start up if I walk down the baking aisle of Safeway to get to the gluten free section so I can't go down the baking aisle anymore. Thankfully after putting in a suggestion to Safeway (at least my local one) they have moved the gluten free section so I should be able to get pretzels. The thing is, I never had such a serious reaction like this, at least that I noticed, before going off gluten. I mean, I always felt icky and I do remember having occasional periods where I had the feeling where my lungs were closing down, but it didn't happen every time I walked down the baking aisle or made bread or whatever. I know I am still getting glutened, I have 2 sons and a husband who eat gluten and aren't AT ALL excited at the thought of going gluten-free. I am already going into panic mode thinking about the holidays. We have Thanksgiving for the family (my extended family and my husband's) at our house which is workable. Christmas Eve is at my in-law's and my mother-in-law SUCKS at taking care of special diet needs because she couldn't even handle the "no processed sugar" that we did with my kids during the school year. Christmas is at my mom and dad's house and she tries, and knows what the obvious things are to leave out, but doesn't know where all to look. One thing at a time though I suppose. Flour dust...is that a common reaction? I can't take antihystamines so I can't take that when I start feeling that way. If it is an allergic reaction, do they tend to get worse over time? I have an epi pen for my allergy to bees, but I hope never to have to use that. Thank you for letting me ramble with my paranoia. - Sara
  4. One thing, there can be gluten in paper products...don't use paper napkins while you are eating, it can be as simple as that if you are an extremely sensitive person and need to be OCD. My best friend's Father-in-law owns a VERY well known vitamins company, her two nephews are allergic to pretty much everything (soy, almonds, rice, dairy...yep, anything you might put on cereal...garlic, they are Celiac, and there are a host of other things they are allergic to). They have done studies because of this so she's the one who told me that I can't get coffee in paper cups. *sigh* Oh, and you might think about getting all your own plates, pans, etc if you haven't already. I started skimming halfway through the second page I'm afraid...my attention span isn't what it used to be (I just got diagnosed on the 18th so the benefits of being off gluten haven't kicked in yet ). A family friend's daughter heads the big gluten free support group here in Oregon (or the Celiac group or whatever it is...a national group with "chapters" everywhere) I guess, and our friend said her daughter didn't notice the full benefit till she got her whole kitchen gluten free so there was no possibility of CC.
  5. Thank you everyone, I really appreciate it! I'm giving everybody their own paragraph, figure that makes it easier. Ooh, the idea that my hair might stop falling out is exciting! At one point I actually had to wear a wig. Sure, I got to have straight hair for once in my life and it was a great wig...such a good one that a family friend even came up to me and told me she liked my haircut. Still, I'd prefer to just have my regular hair back. I figure it will be a while before I notice any neurological benefits, but while I'm not normally patient I am willing to try it now! Thank you for the reminder about the medications. I have to double check whether or not my generic Lamictal and Zonegran are gluten free or not. Kind of pointless to get it completely out of everything else if you are still taking a bunch of it morning and night eh? My goal/dream is to have my meds need to be dropped down like mad. I just had to have both of them doubled a little while ago because my seizures were so bad that I wasn't able to function. If I need more, I will have to have a third added because my neuro won't go higher with either...and I'd rather not. I know, it seems so weird to be happy to have a diagnosis like Celiac, but it is like when I got the epilepsy diagnosis where I finally had SOMETHING I could point to and say "see, I'm NOT insane". I'm a sourdough or soy sauce and rice (and NO, the gluten free stuff isn't quite right) sort of person so it isn't going to be easy to get used to but I can handle it and I suppose if I keep eating the pretend soy sauce I'll get used to it eventually. Thank you for all the links, I'll look into all of them! It is amazing what all is out there. I am just hoping I can get to where I can get a handle on what all is out there. My biggest thing will be to find food that I like the texture of really...I can handle taste more than I can handle texture. I had to give a couple brands of cookies to my husband because of the texture. The flavour was ok but I couldn't handle the texture. My husband seems to be able to eat anything though, but doesn't like the Quinoa pasta...which I do. Go figure.
  6. So after what I think is probably about 2/3 of my lifetime (ie., 25 years) with symptoms, I got bloodwork done to test for Celiac. It came back negative of course, my body likes to make me pay for doctors' boats and vacations so I usually get to go through every step. Things have been hard for us lately though, so when we realized I would then need the endoscope, and that insurance would leave us having to still pay about $1000, my husband about had a heart attack. I went to the consultation with the gastro. After telling him all my freakishly long symptoms list, the fact that we were going to have to do a payment plan or else save up for the test and do it later, because of how I reacted to 2 months off gluten (my neuro asked me to try it first), AND the fact that I have epilepsy which makes the test more dangerous to do were enough he said! He didn't feel he needed to do the endo and it is obvious enough. Yay! It feels like I've won the lottery or something, for the first time in my life I've had something go easily and I'm kind of waiting for the other shoe to drop. It doesn't seem like it should be that easy. He said the other things that have similar sounding symptoms don't line up as well. Chron's disease is a possibility I guess, but he wouldn't want to do any of the testing for that except for a last resort especially because of my epilepsy which adds an extra risk like with the endoscope...plus, it shouldn't get better with going off gluten. IBD doesn't really sound quite right he said, though it does often go along with fibromyalgia which I have, but like with Chron's it doesn't respond to gluten free. Cancer doesn't sound right thankfully, nor does the gall bladder...so that brings us back to Celiac he said. Yes, there are other things, but for the most part that was it I guess. He said that there are symptoms that are more Celiac specific and some that are more Gluten intolerance specific and I have both so I should go ahead and say I have Celiac because people take you more seriously that way. He said some people don't believe "simple gluten intolerance" exists which is upsetting to him. We are hoping this will, along with my digestive problems, actually help my fibro, epilepsy, arthritis (which I developed in my early 20's), nerve problems, unexplained bruising, hair loss, memory problems, tinnitus, TMJ, PVC's, hormone problems, and a bunch more things that could be related to Celiac and have always had doctors either look at me as if I'm being a big baby or as if I'm weird (I've had many a doctor actually tell me I'm weird...like when I got shingles my senior year in high school). I'm quite excited. Now it is just a matter of getting used to cooking 2 meals, 1 for me, and 1 for the rest of the family. My biggest thing will be actually getting my mom on board with this. I've had epilepsy since Nov 28th, 1999 when I had my first seizure, but wasn't officially diagnosed till about 6 or 7 years ago when I started getting serious headaches and an MRI found brain deterioration. My mom doesn't really believe I have epilepsy still. She feels I'm probably making it up in spite of the EEG with the freaky looking brain waves. She told me I didn't need the test for Celiac because it was probably something else and then started listing off all sorts of other things. My dad said that she thinks that back before I got diagnosed I kept looking up things trying to pick something I might have like picking things I was hoping it was. Umm, no mom, I kept doing research on whatever it was that the doctor had said "it might be this, we are going to test for it". Like when they said it might be lupus (one of the things my dad brought up) I looked up that to see what I might be facing. I'm the sort who likes to be fully prepared so I just wanted to know what I would be up against if I had it. If I don't have it...fantastic, if I do...I'll know what I have to do. It is really hurtful though to have your mom not believe you or seem to care what you are going through. Aah well, when I'm feeling better I guess she'll start to see sense eh? Sara
  7. When I was pregnant both times I lost 15 pounds in the first 3 months. Since that is not safe, my doctors told me to eat avocado to add fat. You might try putting some avocado on your Udi's turkey sandwich. That will increase your calorie count for the day. Iron rich foods you might think about adding that you could just carry around with you are things like dried apricots and raisins. You could check the labels on some of the gluten free bars and find one that is high in iron. If you are trying to eat regularly through the day maybe you will be able to eat more.
  8. Sorry, just noticed when this was posted. I hope you got help.
  9. See your ENT now please! I have had Tinnitus in both ears since Nov 28th 1999 and the past year or so it has been getting worse and worse so that now I have to sleep with my fan on high right at my head (which means I have to have a heating pad and 4 blankets), my celiac disease player playing an ocean celiac disease at a volume of 22, and my iPod playing a "noise machine" sound on high. I am now having to take Trazodone in order to sleep too. I have seen 3 specialists who told me there was nothing they could do for me and I was the only person they'd ever heard of who had it start with epilepsy and to get used to it. Trust me, you do NOT want to end up with Tinnitus for any longer than you have to have it. Please, please, please, go see your ENT. I had 1 to 1 1/2 hours of sleep for over 10 nights and at the end of that time (at which point my doctor gave me the sleeping medication) I was going a bit insane, was suicidal and had started cutting myself. I don't wish that for anyone.
  10. Gluten free pretzels with hummus! Mmmmm. I totally understand how you are feeling in dealing with your friend, only I get that sort of thing with my mom not just with the possibility of me having Celiac (we aren't sure yet and I'd be willing to bet she does and my sister too), but my epilepsy which really hurts. She will make comments that makes it seem as if she doesn't believe I have it. Then she'll pull up something like the ketogenic diet without looking into it and get angry at me for not trying it even after I tell her I can't do it because I'm not a kid, it is a dangerous diet, and don't even qualify. She doesn't make sense because she hasn't bothered to learn about the disease(s), just like your friend. When I told my mom that my neuro thought I might also have Celiac she said she doubted it because people with Celiac always looked like waifs since they start to waste away. I gained over 40 pounds in one month while not eating with one seizure medication and haven't been able to lose it...I don't look like a waif. Thanks mom. Everything I've read has said that yes, tummy trouble is common, but isn't a requirement. One thing that is listed as a certainty is that everyone has different symptoms. You can make loads of tasty soups. Umm...I can stave off the waif look I'm not threatened with by eating cream based soups, so I don't make them often at all though they are lovely.
  11. I've had numerous MRI's ever since I started with this back in 1999. A few years ago they noticed some brain deterioration and what they think is calcification. *cry* It isn't severe, but I do have noticeable short term memory loss and if my husband doesn't hand me my seizure medication it is quite likely I will forget to take it, which means I end up having seizures, which probably means my brain suffers and gets worse. For about 4 months this year he was having to spend every other week in Texas while working on a big project (he's a computer nerd) so we think that is why I recently had such a bad spell and had to have one of my meds doubled to make up for how bad my seizures got. I actually used to be quite smart. My IQ was at about genius level. I took 2nd place in a multi state competition for pre-calc with a boy in my class taking 1st. I was in Japanese and getting better grades than students who had lived in Japan while in the military or who had taken 4 years in high school though I had never taken it before. I learned Pi out to 50 digits for the heck of it. I almost never had to use a dictionary because I could spell like anything. I'm not bragging, just stating fact. Now, I have a hard time not double checking when correcting my son's spelling words for his 4th grade tests because I'm not certain of some of them. I'm a photographer but every time I take a picture I have to guess at what my settings are because I can no longer remember where to go from the "sunny 16 rule". I can get there eventually, but it takes fiddling. My brain is no longer mine. At the beginning of all of this they thought I had a tumor, MS, Lupus, poor circulation to the brain, a weird variant of Menieres, a couple other things I can no longer remember. I've had so many tests I can't remember. I've had tons of EEG's, only one came back showing seizure activity, but that one apparently showed "weird seizures" and that neuro (not the one I have now) stayed after hours and had his colleague look at it as they spread the hard copy on the floor the whole length of the hall and walked up and down looking at it. My speech has been mucked up a bit with this too, especially when I'm having a seizure, and my vision tends to go wonky too. After a seizure I will sometimes get postictal headaches that are called "suicide headaches" because apparently they are bad enough that they have caused them for some people. I just lock myself in my room and pretend I live alone in spite of my husband and 2 kids. It can take 2 days for them to go away completely, but eventually they do and I can function again. The one positive thing you can say about me, I keep doctors thinking. My husband has told me that I won't be able to donate my organs because of the lemon law but that scientists will fight for me. I've dissected 2 cadavers and I'm not sure I want to go that way.
  12. Thank you for the replies. So I should make an appointment with my GP then eh? Load up on gluten for a few days to undo any good I might have done (yay one last time for, Panang curry at my favourite Thai restaurant, and I could meet up with my friend for our traditional after Christmas stress has worn off soup salad and bread sticks at Olive Garden ). My neuro said that she's had a few patients who went off gluten and felt better, but because their bloodwork came back negative they went back on gluten so she just doesn't bother recommending the testing anymore because she doesn't trust it and feels something must be inherently wrong with it. I think I am just so scared. I have had too many days where I had to crawl to get places because my seizures were coming in such strong waves so often that it made walking impossible. I have never lost consciousness thankfully, and I can always tell when I'm going to be having a bad day (auras and all), so I can function normally most of the time. I remember once though where I had to slide down the stairs on my hind end holding my son (who was about 2 months old then but is now 9 1/2) because I had to get to the phone since I couldn't walk and I was home alone. My tinnitus has been getting worse and now I have to be on sleeping medication because I was averaging 1-1 1/2 hours of sleep a night for almost 2 weeks and my husband had to ban me from driving and even had to stay home from a business trip that was planned weeks in advance. Celiac sounds like such a lifesaver to me that if I don't have it, I just don't like to think about that option because it means more and more years of the unknown. I am scared to get the testing done and have it tell me I don't have it. I'm tired of being told I'm weird and just helping specialists buy bigger boats. I would like to have something that I can do to stop what is going on with me. Even my epilepsy is weird. Heck, back in university I was called a "hypochondriac in denial" because I was always sick but refused to go to the doctor and kept saying that I was fine. I was used to it and felt it was normal for me. Things like having to pause and cough to get my heart rhythm back the way it should be because it was out of sync and hurt scared people around me but not me. There was the one time I went to the ER because my cornea blistered for no reason, but other than that...I avoided the doctors like the plague. Like I said though, I'm scared to take the testing especially after my neuro said she's had patients get negative results even if they responded. Because of all the weird things that have gone wrong with me, I have always worried that people will think I'm a hypochondriac (thankfully everything is real...EEG's aren't something you can fake, things like that...plus, I still avoid the doctor as much as possible). I don't like the thought of asking for tests that I am actually hoping will come out positive because I feel like it is bad to be hoping I have something, but the thought that having something which would explain pretty much every health problem I've had my whole stinkin' life is more than I can think about without getting a bit excited. I'm just tired of being weird. *sigh*
  13. So my sister and I have always joked about how our health problems must be because of all the royalty we are related to and the inbreeding just ruined our health. I have had multiple doctors literally say "well that is just weird", or they don't even put it quite that nicely and simply say that I'm weird. Now my neurologist is wanting me to try going off gluten because she thinks I might have Celiac and thought that if I spent a month or two off of it, felt better, then ate a piece of bread and felt miserable...I'd have an idea. She thinks that way I'd probably not need the testing. She is hoping it will help with my seizures. I also am she only person that 5 doctors now (3 specialists) have seen who developed tinnitus when they developed epilepsy and she's hoping it might help with that. I just don't know, I have been fighting with this for so long it seems crazy to get my hopes up. Would a month and a half or two months be long enough to go without gluten to get a good idea about how I am reacting? I know I've heard that it can take ages for some people to heal but does everyone feel better instantly? I always had problems with bronchitis, I always got ear infections. Up until I got my tonsils out when I was 23 I had over 150 ear infections. When I got pregnant after I developed epilepsy I had bronchitis for 6 out of the 9 months and even tore ligaments in my back from coughing so much. Those are my more "normal" things though that I've had since I was a little kid. So anyway ever since Nov 28th 1999, my health has been extra screwed up. I had my first seizure that day and everything else began to go downhill as well. My stomach has been getting worse and worse. My cycles are MISERABLE every month. I truly can't wait till menopause hits. I've tried taking different birth controls that are supposed to make that better, but they make it much worse. Every month I think that I am now one month closer...ok, so I have probably another 15 years to go, but still. That also always makes my stomach problems worse. Other things that have made it so that my neurologist decided it might be a good idea to have me do this are things like: I bruise very easily and for no reason (actually had a doctor ask me if my husband beat me), I'm generally anemic, I'm always tired, I have Vitamin D deficiency, I developed osteopenia in my early 30's (I pretend to be 28 but am in my late 30's now...I'll be 28 till I'm 82 at least), I have insomnia even though I'm tired, just plain don't feel good, have bouts of depression, my seizures which are actually a weird dizziness, my tinnitus, I get vertigo occasionally, I have an irregular heartbeat (had to wear a heart monitor when pregnant), my hands will tingle occasionally, my circulation isn't great, I had shingles on my left optic nerve my senior year in high school and then had a re-flare my sophomore year in university which seems to have left my optic nerve deformed. That is just a small list of some of the things that have always seemed unrelated. Even my epilepsy doesn't show up as normal. The head epilepsy doctor at the best hospital in Oregon said that he only ever sees patients once because other doctors send people to him for confirmation and he sends them a report. He said that I was "interesting" (a nice way of saying weird I think) and he would actually like to have me come back to see how my case continued. I'm so very very tired of being interesting and weird and would like to feel a bit normal for once. I would like my seizures to stop getting worse. I'm on the maximum dose my neuro is comfortable with for two medications so my next step is a third and that means more side effects. I truly am trying not to get my hopes up, but I'm having a hard time. I've been gluten free a couple days (or I think so...think, may have eaten something with some odd ingredient I didn't realize...just printed out a list now to lug around) and haven't felt any difference, but I'm not caught up on sleep so hopefully that will help too.