• Announcements

    • admin

      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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

1 Neutral

About lizajane

  • Rank
    Community Member
  1. i take 2 mylan medications and one more med that may or may not be from mylan. did they happen to say that ALL their meds are made without gluten ingredients? i am trying to locate my phone to call, but can't find it (cell phone.) i have been feeling "off" for the past month or two and was blaming it on thyroid. but i am feeling some mild gluten-y symptoms and am worried it is the meds.
  2. YES i think you should try gluten free for you both. as long as you are willing to accept the response to the diet as evidence that you and your child do or do not need to live gluten free, then you really don't have to be tested. your symptoms sound a LOT like mine. and i am 100% different now that i am gluten free. it is THE BEST THING that has ever happened to my health. i had a biopsy, but my son did not and i still feed him gluten free based solely on his response to the gluten free diet. (we both had negative blood tests. i just didn't want to do a biopsy with him at age 4)
  3. i have celiac and i had negative blood test results. and i had my blood test at 33.
  4. please try gluten free for her. one can be gluten intolerant without having celiac. so even if the negative tests are accurate, and i hear they are unreliable in children, she could still be intolerant. my 5 year old didn't sleep. he had a negative blood test, but i decided to try him gluten free anyway. my blood test was negative, too. (my diagnosis came from the endoscopy.) the only time in his LIFE that he has slept well was the 6 months he was gluten free. and the change was nearly immediate. my husband talked me into trying him back on gluten and for about a month, we didn't see adverse effects. and then he turned into a nightmare. waking every night, angry all the time, sleepy, miserable, and nasty bathroom visits with very smelly stool and high volume. he has been gluten free again for a month or two and know HE knows that gluten makes him feel bad. he went back on it so we could officially test him again, and he was still negative. but he is SO MUCH HAPPIER when gluten free. i can't imagine why i would give it to him just because his test said he could have it.
  5. My husband is very, very supportive of the diet and lifestyle. he is totally on board with how to be gluten free. it is the science that sends him into a panic. if a scientist- a doctor- says that the data isn't complete, he jumps on board. he wants hard facts. he wants to know exactly how much gluten one would have to have before becoming symptomatic, including the serious long term effects. his line of thinking is, "it is 70 degrees, so you can't be cold." um, yes, i can. i can be cold whenever i FEEL COLD. he isn't a jerk. he just wants FACTS and not "this works for me." so my doc said this plus this plus this means celiac. but the other doc thinks i MUST HAVE THIS AND THIS. so my husband believes him and thinks i need those tests if i REALLY want to know. he wouldn't make me take them and he knows i was SO sick for years and am SO much better. but it really, really bothers him that he doesn't have every single piece of scientific data. our home is gluten free, except for 4 thins- box of crackers, loaf of bread (when i remember to buy them!), beer and kashi cereal. i don't care about beer, i prefer wine anyway. and he is very careful not to kiss me when drinking beer or eating crackers. he tends to take take the bread to work and eats crackers in the evening in a bowl. all sandwiches are made on a plate and i have a separate toaster. if he puts something in the toaster oven (his) for me or my gluten-free kids, he puts it on a gluten-free baking tray or on foil. all of our family cooking is gluten-free and we only dine out at places wtih gluten-free menus or very professional chefs who can handle it. so really, diet support is better than most and nearly perfect. (i don't care about the 4 items he has in the house because he always puts them on dishes.) also, his father has celiac, so he had already learned a lot about it before my dx. i have been accidental glutened plenty of times! but my main symptom, the one that destroyed me for 4 1/2 years, is fatigue. when i get glutened, it is like i took nyquil in the morning. i am so tired, can't think straight, can't function. this happened for 4 years!! and my trigger was my second pregnancy. so imagine taking nyquil every single day while staying home with a newborn and a 2 year old until they were 4 and 6. my husband didn't believe that i had a medical problem because NO ONE did. except, ironically, my psychatrist, who was pleased to have the information about celiac to use in her work with future tired patients. it was 4 1/2 years of sheer hell. i kept saying something was wrong with me, and he, my best friend and my doctors kept saying i had a mental heath problem and wasn't willing to be honest with myself. it was HELL HELL HELL. so speaking of classic symptoms, i am the polar opposite. no chronic stomach aches, no weight loss... i gained 30lbs.i had chronic constipation. i was so, so tired. my brain didn't work right. my doc said i was only his second celiac patient with weight gain and constipation. anyway. i am babbling my whole story. i was just so annoyed. this guy had my husband convinced to test both my kids by putting them back on gluten, in spite of the fact that we have seen what a terror my 5 year old is when he gets it. stubborn, screaming, arguing, miserable, waking up 4 times a night... TERROR! so i asked his ped, a former ped GI, who said, "why would you do that? if it is working, don't fix it." so we get to leave him alone. and me alone. and i will just have to walk away if GI dad brings it up again. but i sure do wish my husband would "get it" that saying things like, "well, then, let's go home and order a pizza" is NOT (*&^@#&^#@ FUNNY!!!!!!
  6. Here is the brief history: my GP did a celiac blood test in aug 2008. negative. went to a GI in March 2009 and had an endoscopy after vomiting everything i ate for 2 weeks. biopsy was positive for excessive lymphocytes, but did not show damage. went gluten free and IMMEDIATELY stopped vomiting and felt better (fatigue, constipation, foggy brain) within a week and got better and better. Doc diagnosed me with celiac and said i MUST be gluten free. MUST. or i could get cancer. so chatting with my friend- another swim team parent- who happens to be a GI about celiac. my husband starts making all sorts of comments that make me sound a little like i self-diagnosed after doc said i MAY have celiac. (not what happened. doc said i have it.) so GI friend asks, "did you have this test and this test and this test?" and i said, i had a biopsy. i had 40 lymphocytes/epithelial cell. i went gluten free. i felt better. he said i had celiac. and GI friend says, you need to eat gluten rich for one month, have more extensive blood tests, have another biopsy, do breath tests for lactose and fructose and etc. so i tell him. um, i feel better. why would i do that? why would i torture myself for a month??? why does it matter? and he is determined to convince me that i do not have celiac and that i need more extensive testing. ugh. i am convinced that i need to be gluten-free. but my husband is now REALLY getting on my nerves about it. thoughts? (edited to add: my GP did the blood test, not my GI. the GI said he would have done more extensive blood testing. but i refused to eat gluten again so he could do it. i stopped throwing up and i didn't want to start again!)
  7. I can't find the ingredient list on their website, it has worn off my packaging, and I can't call on Saturday. Something glutened me, but not too terribly. The lip gloss that i pulled out the back of the drawer is the only thing i can think of. anyone know about loreal infalliable lip gloss? thanks.
  8. EXACTLY. removing the junk from your diet removed the gluten. and removing the gluten allowed you to heal. before removing the gluten, your body was trying to build immunity to gluten, as though it were a germ. so you didn't notice the symptoms. but they were probably there. it may be why you carried extra weight- i gained 30lbs after my 2nd pregnancy triggered celiac but before i was diagnosed. i lost 9lbs in 2 weeks after going gluten free. and now when i get glutened, i feel horrrrrrible. i felt awful all the time before, barely functioning. but when i get glutened now, it is ALL i can DO to take care of my kids all day. i just want to spend the day in bed sleeping.
  9. you have a lot of the symptoms i had. i think you need to try it for longer than a week. and make sure you are REALLY not getting any gluten AT ALL. you may also need to give up dairy- others know more about this than i do. i had no issue with dairy. your body can go through a lot of changes when you are healing and you may just need more time to adjust.
  10. LIE TO THEM!!! tell them you spoke to a doctor who confirmed your suspicions that she does have a serious gluten intolerance and it is imperative that you keep her off gluten 100% ALL THE TIME or she has the risk of developing serious auto-immune side effects or even lymphoma. i tell my friends that we self-diagnosed my 4 year old, but i was diagnosed by biopsy so when i tell them that is hereditary and even my engineer husband agrees that he is a DIFFERENT CHILD off gluten, they all believe me. but i just tell strangers, "my son and i have celiac." or "we are allergic to wheat." (people "get" allergies better than celiac.) i just say he HAS celiac. not may or could or just does better on a gluten free diet. because when he gets glutened, we hear about it for DAYS. screaming, tantrums, waking up 1-4 times per night, spaced out/not listening, ignoring us... OMG, it is horrible. off gluten, he is soooo sweet and smiley and happy and just a little love muffin. definitely worth a lie!!!
  11. whoo hoo! so glad to see the yellow cake review. i am making it for my first gluten free birthday tomorrow!!! can someone confirm that you can use dunkin hines frosting?
  12. while my son is not abnormally small, he is smaller than his peers and WAY smaller than his brother. so i can't offer you answers, but i do commiserate. dylan is 4 and he is one inch shorter than his brother was at age 3. i measured him just about the time he went gluten free and i am already dying to measure him again even though it has been only a month. (so i am sure nothing has happened!) he wasn't even officially diagnosed with celiac. i was, and with all my research, i learned he had many tell tale signs. he was a new man within three days of going gluten free. so i hear ya, momma. hang in there.
  13. we took my 4 year old so off gluten simply based on symptoms and his family history. i have celiac and my father in law does, too. we had excellent results. we have no intention of pursing a "diagnosis" because we already have one. it came from response to diet, not a doctor, but it was clear that he is better off without gluten. so it counts for us.
  14. yes- i started getting a weird heartburn/reflux type pressure in my chest that kept me up for HOURS after a recent accidental exposure. i have never had that symptom! and my son, who is 4, is gluten free and has amazing behavior now. BUT when he gets glutened by accident, he turns into a little monster (And doesn't sleep!). at first, it only lasted one day. but now that he has been off gluten for more than a month, it has lasted 2-3 days. YUCK!