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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

Mandy F.

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Mandy F. last won the day on November 30 2015

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  1. Hi! I haven't been to these forums in a long, long time since Celaic has been low on my list of priorities but I popped in for some help and saw your question... I am by no means an expert. I haven't kept up on which tests are best and whatnot. What I can tell you, though, is that 9 years ago I had the "Celiac Panel" run 2 weeks before my scope w/biopsies and it came back negative. In the 6 months that I refused to admit I had Celiac and go on the diet, a different doctor ran it again - negative. Another 5-6 months later, after I had committed to the diet, yet another doctor ran it again - negative... It was run annually for a couple of years thereafter by my endocrinologist, though he never said why. I assumed it was to check for any hidden glutening (or cheating)... With all that said, my biopsies were positive and, despite my 6 months of denial in the beginning, there is no doubt that I do have Celiac disease. Since committing to being gluten free, and my gut healing, I now react when I ingest gluten. I started off being able to cheat with fairly mild symptoms for the first several months. Now, there is nothing in the world that could tempt me to bring on that misery intentionally... ugh! I agree with Cyclinglady, you definitely want to get copies of all of your lab work, your endoscopy notes, etc. to verify that they do say "early celiac" or something similar before you make any decisions to pursue other diagnoses or accept this one. However, given your intestinal symptoms and biopsy results, I think the easiest thing for you to do is probably just to go gluten free for a few weeks and see if it helps. If you stick with it for several weeks then eat something full of gluten, you'll probably have your answer. Having the verified test results would make it easier to prove your diagnosis should the need ever arise, but that's pretty rare... Good luck sorting all of this out! I know it's a lot to take in at the beginning!
  2. Well, after not answering her phone the two times I tried to call her about this, the woman leaves me a voice mail saying "I don't think you're the right person for this position since you won't return my calls." So, since I had no answers regarding any of the questions/concerns I had raised, I promptly called DMH and spoke to a woman in Quality Control/Abuse and Neglect. I have serious concerns about an agency which would fire someone for asking questions rather than addressing them in a professional manner. The woman I spoke to seemed concerned and knew the clients' last names when I said their first names... She also said that her daughter had just recently been diagnosed with Celiac and knew that a gluten-free diet wasn't an easy thing to do, but certainly an important one. Without getting into any detail, she said that concerns had been raised in that home before. I personally think the biggest problem there is laziness and immaturity amongst the staff, especially that manager. The place I work for is really great and if I hadn't signed a confidentiallity clause (one of those "can't solicit private services from our clients for X long") thing, I would send a letter their guardians letting them know that there are better things out there for their sons. I am a bit paranoid now that I called that this will somehow fall back on my head... When I called and was trying to figure out who to talk to, they thought I was a disgruntled employee and referred me to the EEOC. They did get me directed to the right person who seemed to understand my concerns, though. She said that someone would be contacting me about this. Whitball: You're awsome! The ISL I worked for before would freak out if a case manager showed up unannounced at a house. Apparently it is against the rules... but really, they employed a woman who they knew spent most of her day asleep and weren't about to fire her. Not to mention the phone calls and not having time to "prepare documentation". As a house manager for that agency, I loved it when my case manager showed up unannounced. I had a lot of problems with staff that were only resolved when the case manager stopped by and caught them. And that was at a decent agency . I only had a problem with one case manager and it was because he would call on his way and say "Is this a good time?" Invariably, he would be on his way as my client was getting ready to leave for work and would show up anyway. Then he would get annoyed with my client who refused to speak to him because he was now running late for work. . We squashed that pretty quick with complaints to his boss... I mean really... a case manager disrespecting a client like that... Sometimes, I really just want to start my own company, do random pop-ins and fire people on the spot for things like sleeping and hour long phone calls...
  3. Neroli: I have considered that he may well have psoriasis, also. I wasn't competely ruling it out in my mind but was angry at the lack of effort on their part to see what this means and to properly document why this may be beneficial to him in the first place. I have no idea where the idea came from to start the diet, but feel like they should be doing more than just sending him to the derm all the time rather than looking for things that could cause/contribute to his condition. Whitball: I have considered all of the things that you said and am holding my call to the department of mental health for one primary reason... He may be on a waiting list to see a dietician, in which case the company can still claim ignorance because they don't know how to educate their employees. They are not required to go above and beyond to search for info themselves (ie: they would use best judgement when starting a diabetic diet until they see a dietician to get specific instructions.) The lack of documentation concerns me, but it is thus far passing the case manager's monthly reviews so I'm wondering if there is verbal info being shared between the house manager and the case manager that I just don't know about. If I find that he has seen a dietician and that they are not even trying, I will ABSOLUTELY be contacting someone above his current case manager to get an investigation started. Other than this particular issue, I see no signs of outright abuse or neglect just extremely poor management and communication. Other than his skin issues (which are being addressed by regular follow up appointments to the derm) he is in good health (seizures, weight, hygiene, routine medical exams, etc. all well controlled), appeared happy, and I did not see any obvious signs of rights violations. The other thing I wonder about is the, for lack of better terms, "unprofessional" documentation and how this could be affecting things. (my primary reason for not wanting to work there) He is not his own guardian but still has the right to choose his food. We have this problem at the good place I work. If a diabetic client chooses to eat a dozen cookies, we have a responsibility to monitor them but cannot intervene unless they are clearly posing an iminent threat to their health or they have a documented plan of action for intervention. It could be that he is choosing his food and not being properly assisted in this area. Again, the documentation doesn't say anything but what he ate, not if he chose it, if he was encouraged to eat something else, etc. (which is how it would be documented at the reputable place I work). At the very least, I would consider this agency sub-par. They are doing the absolute bare minimum documentation necessary to receive funding. The people working there seem ignorant (and could therefore be guilty of neglect) but they do not seem outright abusive. They seem concerned about his well-being (they did request this from the doc after all) but not enough to independently research what it means. I also have a feeling that personal pride comes before patient responsibility as I received a message saying "You need to call me about this little note you left me on the table." The "note" was a list of questions (including about whether he's seen a dietician for the diet yet) and a list of missing documentation I noticed while reviewing their books. The manager was made well aware that i was a house manager for 3 years at another agency and should have known that I would be looking for these things if she was a decent manager at all. Did I mention that I applied 3 weeks ago, was told I would start the following week, and only went in yesterday because I called the woman and asked her if she was still planning to use me. She said "Oh, sorry, my daughter went in the hospital this weekend (appendix or gall bladder or something) and I forgot to call you. I've got you on the schedule for tonight and a few other days but the schedule's in the other room. You'll have to look at it when you get here..." Had I never called, I wouldn't have even gone in... It says a lot about the agency's ability to hire management, though. And it's the reason I left the last place (I stepped down and was replaced by a person with very similar qualities). I should have quit before I started just based on that conversation! But now I feel bad for this guy... I would try to get this woman fired, but I think she's the owner's neice or something and was promoted to this position after staff arguments caused the previous manager to leave. It's all a big mess... part of me wishes I had never gotten involved... I knew it would be a poor working environment (between the manager and employees) when I started and it never makes for a productive living environment for the clients.
  4. I recently accepted a third job which I already considered suspect based on the (lack of) interview because I'm that desperate for cash. It's a home health position and last night was my first night. While going through the books, I saw a note that said "low gluitin diet" (spelled that way!) and I asked the other staff about it. She didn't even know what gluten was, but had only been there for a couple of weeks... As I continued through the book, I realized that they have him on this to treat him for "severe psoriasis" so I assume someone (couldn't figure out who) thinks it's DH. I read every single document in that house that I could find and there was not one mention of the word gluten except for that little note on his doctor's orders and a doctor's visit sheet to get the diet approved!!! To top it off, he hadn't had a gluten free meal since the approval of the diet!!! I was so mad... and quite frankly due to this (and many many other things like missing documentation and a complete lack of competency from this agency altogether) I don't intend to keep this job for long. I was even more appaled when I got him out of bed and he was showing me his feet and his head/neck which was covered in scaly, scabbed, red rash. He kept saying "Look!" and picking at it and scratching it. The evening staff had commented that they had him eat gluten-free foods for a couple of weeks "but he's only got a $40 allowence for gluten-free foods so after the 40 is gone, they stopped buying it." She said that while he was eating it, the rash got better... He'd probably have more money for the gluten-free sub foods if he weren't on 7 different meds for the "psoriasis" (not to metion the ones for his other unrelated conditions) and going to the derm every 3 months for follow up and new meds that are all being considered ineffective!!!!!!!! At any rate, I was replaced by the "lead staff" this morning who said "Oh, He's only "low gluten" so he only has to have some gluten free stuff" . Clearly she doesn't get this at all, either. Not to mention (and no exaggeration at all here) the only gluten free foods in the house were a bag of gluten-free pasta, 6 eggs, a few grapes, a few pieces of cheese, and a half a bag of broccoli. There were also 6!! open loaves of bread!!! Several containers of various left over pasta dishes, 4 open boxes of cereal, 3 open bags of flour, and several packets of various types of gravy! I wanted to explode on the so called "lead staff" who had no idea what gluten was either, but I think this is a complete agency failure and not just them. I would have exploded on the management except that it was my first day, my direct manager's daughter is in the hospital, and I have no idea who else to complain to. The nurse has supposedly been reviewing the house monthly and there was no note what-so-ever of his completely non-gluten free (or even freakin low!) diet mentioned. Sorry for the vent and if you read all of this, thank you! I needed help because I know that there should be info out there about this that I could give to them, but working 86 hours this week, I just really don't have the time or energy to look it all up. Not to mention I think it would have to be simple enough for a toddler to understand to get the message across to these people. I was hoping that some of you would respond with some articles/info about DH and the fact that it's either gluten-free or not and there's no such thing as "low gluten" and eating at least 1 piece of bread with each meal certainly wouldn't be a qualifier for "low" if there were such a thing. Alright... I've got 4 hours to sleep before I have to leave for job #1 (a real job with documentation and professionalism and stuff... ). Thanks in advance to anyone who waded through this!
  5. Freezer Recipes?

    Thanks for all the suggestions! I was kind of drawing a blank the other night when I tried to come up with a grocery list... Violetblue: Do you have a recipe for the enchiladas? I've never made my own, but it sounds like a great idea. Now I just need to get up the energy (and time!) to cook all of this stuff and freeze it all up!
  6. I was just wondering if anyone had some good recipes that I could make up ahead and freeze. Right now, all I've really got is Chili and Fried Rice (adapted from my preGF recipes ). I'm primarily looking for meals so that I can just take them out of the freezer and pop them in the microwave when I'm just too tired to cook! I have a major issue with buying a bunch of groceries and then not eating them before they go bad... but all the gluten-free premade frozen stuff is really expensive! Thanks! Mandy
  7. I guess I just need to rant a little bit but I'm so frustrated! I've been feeling ill since a few weeks before I was diagnosed with Celiac in March. I initially resisted the diet, but I began following it hoping that I would start feeling better, and for a little while I did. Then I got the same sort of symptoms again, extreme fatigue, swollen glands, aches and pains... the list goes on. Well, at the end of October, my doc hospitalized me for 3 days and ran a bunch of blood tests and had me seen by a neurologist and a rheumatologist. The neurologist said depression (go figure... ) and the rheumy said maybe fibro or lupus (w/strong family history). Well, I found out I was hypothyroid and had a postive ANA. I went back a couple weeks later to have the ANA panel completed but it was negative. The same tests showed that my B12 was low but it was fine two weeks prior! So, through all of this, I have not actually felt any better. The rheumy suggested Plaquenil (I guess he's treating this as lupus even though the tests were kinda screwy) but I opted to try Provigil (for energy, and less side effects) until my next set of thyroid tests comes back. So, in the course of about a month I've gone from being on one allergy med to taking a handful of meds and a shot every morning!! This is not the way I wanted to start 2007! I feel like, all of a sudden, I'm falling apart...
  8. R.i.p. Gluten

    I was lying in bed the other night and had one of those lovely nostalgic sort of feelings. Like when you're reminded of a memory because of a smell or sound. I'm not entirely sure what brought it on but for some reason my thoughts drifted toward memories of miso soup (I'm thinking I was half asleep at this point... ) I was thinking about the first time I had it as a child, the last time I had it, and the time I tried to make a homemade knock off version of it. I think I ended up falling asleep with a smile on my face, but I still felt a little sad. Then today I had the same sort of experience while thinking of the holidays, except with people. I was thinking of all the wonderful memories I had with loved ones who had passed away and I would never see again. Only then did it occour to me that miso soup (and all other big glutenie meals) had officially died and moved on to a better place...
  9. Funny Scent In Nose

    I've been getting this lately too. I don't know about you guys, but I smell something fruity... like one of those blueberry scented markers. I have migraines and have had seizures in the past but haven't been getting them along with the scent...
  10. I don't have much advice for your thanksgiving dinner, but as far as school, i would put it exactly how you phrased it in your initial post. I find that most teachers are pretty understanding as long as you've been making an honest effort to do the work. I would also ask if there is something you can do to improve your grade. Sometimes they won't give you any extra work but will be impressed with the effort you're showing... but then again, they could give you something extra as make up work... Good Luck!
  11. South Padre Island, Tx

    I'm spending the weekend here and don't have any idea of restraunts/stores where I can get gluten-free food. My BF (who's from around here) has said that he doesn't think many restraunt employees here will speak english or know about gluten/wheat flour even if they do (unless we went someplace upscale maybe...) So, if anyone's been here and has any recommendations I'd appreciate it. Thanks!
  12. Dehydration

    Has your doc considered Sjogren's Syndrome? I don't know a ton about it bue I just found out that I may have it (from an ANA test). I looked it up and dry eyes and dry mouth are two of the primary symptoms, but there are a TON of other symptoms including joint pain, dizziness, and being cold. I don't have any other advice, but good luck!
  13. I've basically been sick since last March with disabeling fatigue and some swollen glands. Doc tested me for everything she could think of back then and everything was negative so she said it was probably a virus. It came back at the beginning of Oct. I saw a doc but not mine (he didn't even look at my chart ) because my doc was booked. He said it was a virus despite everything I told him about what happened to me in the spring. I decided to start looking into specialists on my own. I ended up going to the ER last Wednesday after being so weak that I could not stand. The docs reccomended that my family doc start looking for more rare things but didn't do much (I didn't expect them too, but they were very nice and understanding). The first appt I could get with my doc was Tuesday. She reviewed everything and said that she was just going to redo it all to see if anything had changed. She was really nice and understanding. She asked me if this could be depression (I've had a history) and I assured her it wasn't and she acutally believed me! She then started saying that she was going to send me to see some specialists, a neurologist and a rheumatologist. When she started talking about the specialists I broke down. I have been so exhausted that I was afraid to drive my car for fear that I would fall asleep at the wheel. I told her "at this point, I just want to be admitted to the hospital until we can find out what is wrong" To my surprise she said "I don't have any problem with doing that but the insurance company might. I'll go ahead and admit you. The insurance company will give me at least 23 hours then I'll have to do more convincing. At least that way we can get some tests done and some specialists in to see you." I went to lunch then to the hospital. I was in the hospital for less than an hour before a neurologist walked in to assess me. She talked to me for 5 minutes and determined that I was depressed . I went off on her. I told her that for 20 years I had been told that every symptom I'd ever had was stress or depression and in the last 5 years I found out that I had celiac disease and endometriosis and she didn't know what she was talking about. She stuck to her guns anyway ("sometimes you just can't tell you're depressed when you are") and they started giving me an antidepressant. My doc just told me to go along with it because it could help but she still set me up with a rheumatologist. He came in and did an eval and actually asked me questions! He said that I had such a long history that I could have a lot of things and that I had a lot of symptoms of fibromyalgia. He took 5 vials of blood . So, this afternoon, my doc called my room and told me that my TSH had come back low and my ANA had come back positive. She had done both of these tests twice before with normal results. But she agreed that if I hadn't been in the hospital, this probably would have taken months to figure out and called in my new meds to my pharmacy immediately. Now I'm just waiting for the rest of the rheumatologist's tests to come back and I have to follow up with my doc next week. She was totally nice, though, and I'm just glad to finally have someone listen to me and take me seriously. Side note on the food: the first meal, they didn't know that I was gluten-free (but no big deal, I ate lunch right before I got there). After that the dietician came to talk to me and said that everything would be gluten-free and if it wasn't, have a nurse come to get her. Everything was gluten-free, but I didn't get to pick my own food and they would not give me Kraft Ranch salad dressing b/c "modified food starch". I asked to speak to the dietician about it and she said "well, basically it's hospital policy that I have to make your menu so we don't get sued. My supervisor won't allow me to give you anything but oil and vinegar." Then she asked me what I did and didn't like so she could make me better menus. But then I went home... but at least they were looking out for me and I could eat safely.
  14. I Hate Winter...

    I suppose I'm horrible because I'm not a big fan of summer either... I have tree and grass allergies (that I'm growing into instead of out of) and they just keep getting worse every year. I'm supposed to start allergy shots, but probably won't start them until my next school break (my doc only does the set testing during my class time and I've already missed too much). I'm afraid of tanning beds, too. I'm afraid I'll just burn to a crisp. Hmmm... maybe I should just give up and move to AZ. Not as much grass, not as cold, and less humidity right?
  15. I Hate Winter...

    Yeah I'm absolutely going to have my thyroid retested with an endocrinologist. I've got an appt scheduled for Dec. 14th, but I'm going to shop around and see if I can find someone that can get me in sooner. I've got serious fatigue and swollen lymph nodes for the second time this year (last time was in spring, but the glands never did go back to normal). My family doc ran what seemed like a million tests (including thyroid, lupus, CT scans,and so many more that I can't remember). I had a really bad sinus infection and had just found out about the Celiac at that time also. So the theory was that the sinus infection had been compounded by a virus and -- after two rounds of antibiotics and a steroid -- I did start to feel better. I saw an ENT at that time (for the sinus infection and allergy testing). He didn't come up with any new theories... I'm getting really sick of all of this though. I'm to exhausted to get my homework done so I dropped one class and I'm not doing well in my others. On top of that, I'm seriously considering either quitting my job or taking a medical leave because I'm afraid I'll fall asleep at the wheel and I have to drive my clients around (I work with disabled adults). The more I think about it, though, the more I think that this has happened to me at least once a year for about the last 6 years. I've just had so many other things masking it (panic attacks, depression, endometriosis, sinus infections, etc...) that I thought those things were the primary cause. Now I'm thinking whatever is causing the fatigue is causing (or compounding) all of the other problems... Can that be a thyroid issue? I don't think it's SAD because it's not specific to the time of year... O.k. sorry that was totally off topic but I'm feeling really desperate right now... slightly back on topic... Do you guys have problems with like cold drinks and things? I can't hold a gallon of milk in my bare hand and walk from the fridge case to the cash register w/o my hand hurting from the cold... I don't drink cold drinks either unless I can set them down for the same reason. Just wondered if that oddity was specific to me. I've always thought it was strange but maybe because people make fun of me for it.