Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • 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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

1 Neutral

About JosieToo

  • Rank
    Community Member
  1. Avoiding Cross Contamination!

    Would your family go gluten free? When I was diagnosed my husband went gluten-free too. He just said "it's not worth risking your health for me to eat gluten". At minimum, wheat flour in the house is a no go - just way to risky. Does your family understand how dangerous it is for you to get glutened?
  2. I started having symptoms and was diagnosed with celiac disease shortly after a very bad virus. My doctor said that my celiac “gene” was very likely triggered by the virus and the toll it took on my body. As someone who was previously healthy and had never had any medical problems, it was shocking and scary to think that you can literally wake up one day to a major health challenge. Ever since then, when I get sick I get paranoid that I’m going to trigger some other unknown gene and end up with another auto-immune disorder. I know my risks are slightly elevated for other auto-immune disorders, which only amplifies the feeling. Anyone else experience this type of fear?
  3. Call ahead to the venue and see if you can be accomodated. If not, bring a bag of chips in your purse and eat (a lot!) ahead of time. That's what I do! When I explain that I have significant food restrictions, people understand.
  4. No symptoms doesn't mean no damage. It's up to you to be an advocate for yourself and your children. You need to clearly provide guidelines for her. Make it easy - if she's not willing to buy new cutting boards, etc. (my parents and in-laws keep a box of kitchen-ware especially for me), then bring your own. My husband and I have a "portable kitchen" box that we take with us when going to stay with others, on car vacations, etc.
  5. Emotional Stress On Yourself, And Loved Ones

    Would your parents be willing to visit with a reputable celiac doctor or dietician who could explain how dangerous gluten is for you, and how to protect yourself?
  6. My husband went gluten-free at home when I was diagnosed. But, we still eat out. Mostly just "pecks" until full brushing!
  7. Contamination Anxiety- Help!

    Honestly, in three months eating gluten free will be a breeze. Also, attitude plays a HUGE role in how you deal with celiac disease. For me, it’s really not a big deal. I focus on what I can have, not what I can’t. Others in my circle who suffer from celiac disease are miserable and constantly wasting energy feeling sorry for themselves and lamenting the foods they can no longer eat. It’s counterproductive. Give yourself a bit of time to mourn, then move on.   Like you, I did not experience traditional symptoms of celiac disease.   My doctor told me the following about cross contamination “a crumb is as dangerous for you as eating a loaf of bread”.   I also asked my dietician about the damage from cross contamination and how quickly you will recover. She said that if you go 6 months between “glutenings”, the damage can be slowed relatively quickly. However, she also said that being strict about gluten is the best way to reduce your risk of developing other autoimmune disorders.   Your best defence against cross contamination is 1) a 100% gluten free household and 2) limiting eating out.   Shared households can be done, but you must be “on” 100% of the time. When I was diagnosed my husband decided (without me asking) to go gluten free. He said “it’s just not worth risking your health so I can eat a bagel”. Be sure to do research on what kitchen items need to be replaced. Generally anything porous/scratched should go (think Teflon, Tupperware, etc.). Don’t forget your BBQ grill!   Oh, and your kids will adjust to eating gluten-free at home. Honestly, if you really want – there is a replacement for every gluten containing product (except croissants – just haven’t found a good one yet!).   Eating out is a pain – no doubt. There are some great restaurants (mostly chains) that have procedures and policies in place. I always make sure at the beginning of the meal to tell them that I’m celiac – not just trendy – and that all precautions need to be taken (i.e. change gloves, prepared separately, etc.).   All that having been said, we continue to live our lives fairly normally. We travel a lot, enjoy eating out with friends and going to other’s homes (we always bring my meal or bring a gluten-free dish so I have something to eat). My parents and in-laws both have a box of cookware / cutting boards, etc. set aside for me at their homes, so I can eat there without concern).    You can be healthy and live a great life - and eating this way really does become easy. 
  8. Margarine Tubs

    I wouldn't risk it. It's probably fine, but why take the chance? If there is ANY known potential risk I just don't do it. But I'm pretty much an anti-cross-contamination zealot!
  9. I've been gluten free since August. As far as I know, I've never been "glutened". Until now?   My symptoms prior to diagnosis included anxiety, difficultly breathing (tight throat and chest), heartburn, burning throat and burning eyes. Over the weekend I was out of town and eating in a much less controlled environment. Last night and again tonight I'm experiencing all these same symptoms that I had prior to going gluten-free. I went for my usual run on Sunday and it was AWFUL. I could not catch my breath afterwards and really was struggling!   Does this sound like a glutening? I'm worried it might be a sign of some other allergy (though I was tested just a few months ago and no food allergies were identified). Is there anything I can do to help reduce my symptoms? Thanks!
  10. Ireland - Tips Needed!

    I'm traveling to Ireland in a couple of weeks on a press junket. Basically, we are carted around for four days to different hotels, restaurants and activities to report on them for our respective media outlets. To this end, there is very little flexibility in terms of where we are eating and no ability to "stop the tour" to buy my own gluten-free food. While I have mentioned my celiac disease, there's really not much they can do.   Obviously I will bring a lot of gluten-free food with me (always carry nuts, chips, etc. when traveling). I also try and limit exposure by having as many safe foods as possible (breakfast: hard boiled egg in shell, yogurt, fruit in skin, etc.). Any other tips for this type of trip?
  11. From my experience, most cruise lines are generally very good when it comes to preparing food for celiacs.
  12. I'm not sure if it helps, but I went through a similar phase. I became terrified after reading online comments about other "intolerances" and other diseases. I finally went to see an allergist and he told me this. "Some people have Celiac disease and other issues. Most just have Celiac disease.". I would try to avoid any speculative and anecdotal commentary about celiac disease - I tend to stick with reputable, supported-by-science sources (like the University of Chicago Celiac Disease Center). For example, aside from dairy which some Celiacs have a problem with (which resolves for many after a time on a gluten-free diet), there is zero peer-reviewed medical literature that supports the idea of "food intolerances" with celiac disease.   My GI doc told me that while people with celiac disease can have a higher rate of developing some other related auto-immune conditions, the risk is still relatively low and strict adherence to a gluten free diet is your best defense.
  13. Of course. I'm just looking for opinions from other members based on their experiences.
  14. Hi all,   I’m on a few other forums for people with Celiac Disease and I am frequently concerned by the misinformation about the disease, its treatment and the intricacies of going gluten free. I would like to put together a “first steps” guide to Celiac Disease for those who have been newly diagnosed.   I would love to hear your “best practices” with respect to Celiac Disease. What do you wish you’d have known when you were first diagnosed? What tips would you give to someone who has just been diagnosed and is scared and confused? What myths and misinformation do you hear about Celiac Disease? Can you share any links to other pages that offer tips for the newly diagnosed?   Would love your feedback! Thanks in advance.
  15. Have been gluten free since August 27th. Last two nights I’ve had what seem like allergy-symptoms. During the day when I’m out I’m fine. It’s after I eat dinner at home. Aside from shellfish, I have no known allergies and have never had seasonal allergies. Both times seem to come on in the evening and I wake up the next morning stuffed up. Burning eyes, stuffy nose, sneezing.   I can’t figure out if this is a reaction to gluten and if so, where it’s coming from. Our entire kitchen was de-glutened the day I was diagnosed (foods, cutting boards, Teflon pans, wooden spoons, etc.). I haven’t been wearing any lipstick other than gluten-free lip gloss. I’m eating very few foods that are packaged (mostly just fresh fruit, veggies and meat) and those that are, are gluten-free. I’m taking food with me if I go somewhere else. I can’t see a correlation between anything I ate yesterday and today.   So incredibly frustrating. Now that I’m gluten-free I just want my body to heal. Every time I have a reaction I feel like it’s a huge setback! It feels like the work I’m doing is being dismantled by gluten or whatever this is that’s affecting me. Ugh!