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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 AnnieInItaly

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  1. I am going through pretty much the same thing as you (luckily no heart attack or organs removed, but I've been hospitalized more times than I can count in the past 12 years), and I've felt 100% better being off gluten. About a month ago I finally got in to see a gastrointerologist, and she convinced me that they need to do a scope and biopsy, and I'm halfway through two months of eating gluten before the test. The first week I felt horrible. WAY worse than I ever felt while I was eating gluten. I still feel quite bad, but it's tolerable.... basically how I felt before. I'm fuzzy headed, have gastro upset, migraines everyday and can't feel my hands, but I can still function enough. For me it is important for three reasons to know if it is celiac or not: 1) a significant portion of my extended family have the same problems as me, but refuse to try going gluten free because they don't want to be inconvienienced. If it IS celiac, they probably have it too, and maybe this will convince them to do what they need to do 2) I want to know if I'm seriously risking my health if I have very slight traces of gluten in my food and 3) The Italian government will cover a good portion of my grocery bill if I am celiac. I think it is worth it to feel horrible for a few months, given the tradeoff. Mainly though, if it is celiac, I want my family to take care of themselves since they have the same thing going on with them as I have.
  2. Wow, my story is pretty much the same as yours. I don't have a celiac diagnosis (yet) because doctors keep telling me it is in my head, and don't believe me. My husband (and family) doesn't take it seriously either, he says that if gluten really made me sick I'd be dead or sicker than I am, but in reality I have felt horribly ill for 12 years and I've just gotten used to it, and used to pretending like I'm ok.
  3. Favorite Pie Crust Recipe?

    does anyone know if the egg in many of gluten-free pie crust recipes is necessary? I baked normal pies professionally until a few years ago, and now that I've gone gluten-free I've been trying to figure out the best way to do pie. In a normal pie crust, I've never used an egg, but maybe it is different with gluten-free flours?
  4. I just got my test results back for blood/urine/fecal, and it'll be a while before my doctor can see me (I don't really trust her anyways, she thinks that my GI issues and other health problems are 'in my head' and doesn't believe in gluten intolerance). Most things look normal, but she didn't run a full celiac panel. I'll post what is probably relevant, if anyone can see anything worth attention. I'm going to try to translate the blood tests from Italian, but I might not get them exactly right: sangue occulto feci (hidden blood in stool) 119 ng/ml (positive >100) MPV 10.7 fl (normal range 7.4-10.4) ****I've had this high on previous blood tests, too, but docs never said anything about it TSH 3.61 uUI/ml (.46-4.2) FT3 2.88 pg/ml (2.28-4.2) FT4 1.28 ng/dl (.1-1.66) my cholesterol was sort of funny as well, which is surprising considering I eat well, I'm thin and muscular, and am pretty active: cholesterol 172 mg/dl (normal <200) HDL chol 34 (for women normal >50) tricglyerides 185 (normal <150) tests that seem relevant to celiac testing: chlorides 106 mmol/L (97-110) A immunoglobulins 1.84 g/L (0.70-4.00) alpha 1 glycoprotein acid 0.64 g/L (0.5-1.2) Ac anti transglutamase IgA 0.4 ,U/ml (<2 negative) Would appreciate any feedback, thanks!
  5. I've been off gluten for 12 days...before that I was off for 2 weeks, and then on for two weeks, to see how my body reacted. The first week or so weeks when I was off, I was horribly ill (dizzy, nausea, insomnia, headache, irritability) and then started feeling great, and when I went on gluten again I had horrible cramps, vomited, bad diarrhea, dizziness, nausea. The withdrawal and getting glutened honestly feel pretty similar to me. Given how strongly I reacted when I ate gluten, I don't doubt that I'm sensitive to it (and tomorrow I get my celiac blood panel results), but I feel horribly ill today. This early on, how can I tell if I got glutened or if my body is still adjusting? I have stomach cramps, D, headache, nausea, my hands are numb, and am so dizzy I can't stand up. The only thing I can think of that could have potentially glutened me is some cornmeal I cooked with. The package doesn't say that there could be trace amounts of gluten (aren't they required to, legally, if there is CC? It's a small producer or stone ground cornmeal), but it doesn't say gluten-free, either. But if it is CC, is it possible for my body to react so strongly to small amounts this early on?
  6. No Appetite

    I'm glad to know it's not just me feeling this way! I'm about 10 days into eating gluten-free and I can't hardly make myself eat anything. I don't know if I'm not hungry enough (I used to eat A LOT even though I don't weigh much), or if this is what a normal appetite feels like. I've also struggled with reactive hypoglycemia for the past 10 years or so, and my body usually freaks out if I go more than a few hours without eating, but I haven't had any issues with it this past week.
  7. I've heard different things, but I think it matters how sensitive you are, and if it is something you use on your hands or not (can easily transfer to your mouth this way). I'm actually starting up a line of natural cosmetics, and since discovering my gluten issues, I'm making sure everything is gluten-free. Cosmetics have to list ALL ingredients used, and if you see 'hydrolyzed wheat (or oat) protein', it isn't gluten-free. Unless it is a product containing some other kind of oats, in which case look for any ingredient with 'avena' in it, it should otherwise be gluten free. To my knowledge, those are the only cosmetic ingredients commonly used that contain gluten.
  8. I've recently gone gluten free, and so far have managed to mostly avoid eating at the houses of others. However, our (husband and I) social life mostly involves eating with others and we are invited to a dinner party in a couple of days. I really don't want to offend our hosts by going and not eating anything but I don't want them to feel like they need to make something special for me. I'm also a lifelong vegetarian, and my husband doesn't eat cheese, so we were already difficult enough! I'm fine with eating something at home before, but that might be a little strange or offensive. Any advice as to how to navigate these waters without making a big deal about it? I don't know if I'm celiac or not yet, I'm waiting for the test results, I just know that I feel better not eating gluten, but don't know how sensitive I am yet. I don't want to get glutened, but I also don't want to make it 'all about me' and/or offend anyone. Ideas? Thanks!
  9. Non-Supportive Husband While Going gluten-free

    I'm only a month in and I look like I've lost 20 pounds, even though it's really been less than 5. I think I've just been insanely bloated for the past 10 years and didn't realize it, because there's no way I could go from having my belly stick way out like I'm pregnant to having my hips and ribs stick out in just a month. I was always confused as to why my belly stuck out, when I never weighed so much, and have always eaten healthy and exercised.... guess I know now!
  10. Non-Supportive Husband While Going gluten-free

    I'm in Aosta, which is in the far NW of Italy, and pretty soon I'll be going down to Torino on a weekly basis. There is a pizzeria nearby that does gluten-free pizza, but I can't help but wonder how they deal with cross contamination. A 2 minute walk away there is a pastry shop that does gluten-free cookies that are pretty good, and I've found some pretty great pasta in local grocery stores. With restaurants, at least I can still eat polenta! I'm also a vegetarian, and polenta was usually the only thing I could eat anyways, so not much has changed (they eat LOTS of meat in my part of Italy).
  11. Non-Supportive Husband While Going gluten-free

    See, they are conscious and not conscious of it at the same time. They all know what it is, but they don't realize that there exist non-celiac gluten intolerances... even my doctor told me she doesn't believe in it, which is a bunch of bull (I don't have much faith in the Italian healthcare system, because the doctors don't seem to be well trained. They still teach many things that were disproven by the medical community decades ago). They also don't realize how sick someone can get from gluten...it is because they test everyone, so it seems that everyone knows someone who is celiac but not symptomatic, and then they don't take it seriously. They also all seem to think that Kamut is gluten free, and an acquaintance was telling me last week about how she fed Kamut to a Celiac kid she knew, and his mother said it was ok. Friends keep trying to give me Kamut, and no one seems to understand that it has gluten. I think it might be more dangerous here in Italy because people THINK they understand a gluten-free diet, but they really don't at all. There is a lot of misinformation here.
  12. Non-Supportive Husband While Going gluten-free

    Thanks, y'all. I'll give it more time and hopefully he will eventually 'get it'. I think it's possible that he doesn't want to be inconvenienced, and wants me to keep baking normal bread, pies, and cakes! And eating out and with others at their houses is a huge part of the culture where we live, so this is having an impact on our social lives, which he isn't happy about. He is really wonderful most of the time, he just doesn't understand this yet. To be fair, I hardly ever complained about my symptoms to him (they've been going on for much longer than I've known him, and I began to think that was what 'normal' felt like), so I guess there's no way for him to understand how much better I feel now in comparison.
  13. I don't know if I'm Celiac or gluten-intolerant yet, I have to wait until the test results come back next week. I do know that when I eat gluten, I get horribly sick, and when I don't, I am fine (by sick I mean many GI problems, excessive fatigue, fuzzy brain,nausea, dizziness, migraines, blood sugar issues, numbness/paralysis in extremities, skin rash, etc). I'm trying to cut out all traces right now so that I can let my body heal, and then later I can figure out exactly how sensitive I am. Unfortunately, my husband isn't taking this at all seriously. I'm trying to cut all traces out, and he keeps insisting that a little bit of gluten surely can't hurt me. Like if there are cookies in ice cream, bread crumbs on the counter where I'm preparing my food, or even an occasional slice of pizza. I keep telling him that I need to cut it all out so that I can feel better, and he's just not on board and keeps contaminating my food. His sister has a friend who was diagnosed as Celiac, but she doesn't have many symptoms and still eats whatever she wants, so he is using that as proof that I can eat whatever I want, too. My mother-in-law and sister-in-law insist the same things as him.... that surely having some pizza every now and then is ok (we are in Italy, so pizza is important to most people). I guess it's his family, they all have a habit of continuing to eat things that they know they are allergic/intolerant to He seems to think that once my body heals itself some, I can eat gluten and be fine. And that a little bit of gluten now won't hurt anything, especially if it turns out I'm not Celiac but just sensitive. Does anyone have any advice as to how I can make him see that this is something that needs to be taken seriously? Apparently me being too sick to move,much less work, isn't enough.
  14. Peripheral Neuropathy?

    I've been tested multiple times for seizure disorders, but apparently I am seizure free (even though I have a few family members with seizure disorders). I don't lose consciousness at all, I'm alert enough, I just can't communicate or move much when it happens.
  15. This week I am getting the blood work done to see if I am celiac, but I won't be able to see a specialist until mid-November. It would certainly account for all my weird medical issues over the past ten years that doctors haven't been able to explain. But, there is one symptom in particular I want to ask about, as it will be quite a while before I will be able to get in to see the specialist. For the past 8 years I occasionally undergo spells (usually lasting 4-24 hours) where my extremities become weak to the point of temporary paralysis. Doctors haven't been able to figure it out, it is like periodic paralysis but my potassium levels are normal. From what I've read, this could possibly be caused by celiac, right? I've read that peripheral neuropathy can occur, but I'm not sure if this is what I'm experiencing. When it happens, it is often in conjunction with a low blood sugar episode (I have reactive hypoglycemia), and in addition to the loss of ability to move I have trouble talking, my words come out as slurred nonsense sounds. I lose some sensation, but not much, usually I just can't move at all, and I'm exhausted and weak for a day or two after. Is this what peripheral neuropathy is (or something else gluten related), or is this something else? Thanks!