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  1. Today
  2. Weird things people have said

    You are right Dania, you cannot have "mild Coelic" disease and you cannot eat "a bit of gluten here and there" if you've been gluten free for a while. Coelic disease is a lifetime commitment to being gluten free, even if you don't have symptoms, it is still damaging the villi in the gut, which can lead to more serious health problems, (not that Coelic disease is not serious, because it is). Some people may question whether it is safe to use the same colander as those cooking gluten, but it depends how well it is washed up as it is quite easy to miss bits. Personally, I bought a new one and I would definitely not use the same sieve as the mesh is far too tight not to collect small amounts of gluten. I'm not too surprised at doctors not knowing all they should know about Coelic disease, it's the same here in the UK where Coelic UK actually advise doctors on the disease.
  3. Depression / anxiety issues

    Hi Chris, haven't had a chance to read the whole conversation but regarding dairy, if you are suspicious of something, drop it for some time and see. You are still healing so maybe dairy is bothering you now. Also look at the nightshades, corn, dairy, soy, and eggs. I had a horrible time last year. I had muscle twitches, brain fog, pain, was tired,etc. I searched online and decided to drop all of those things I mentioned above. I am not sure what bothered me since I dropped them all at once but i slowly began feeling better. Now, i reintroduced eggs again and sometimes have lactose free milk with my coffee. I recommend eating salmon, tuna, bone broth soups, using olive oil and coconut oil and not eating much or not at all processed food even if it is marked gluten free.
  4. I've had people say strange things about celiac to me lately... Like someone said, "Oh I'm just a mild celiac so I don't have to worry about cross-contamination." And then someone else said that they're celiac but things have calmed down now so they can have a bit of gluten here and there. And I told my doctor that back in 2014 I thought I had been gluten free but I actually wasn't because I had been repeatedly glutening myself with an old colander. And he just looked at me like I was insane, like a colander?? Sure... I'm not crazy, right? Even if you have no symptoms you have to avoid cross-contamination because you can be doing damage internally right? You can never have 'just a bit'. And a colander is a big source of cross-contamination right?? I know all this but why do these other people not? Why does my doctor not know? So confusing and spreading misinformation... And then they look at me like *I'M* crazy.
  5. Look up FODMAPS. That might clarify things for you. There really are a lot of diet recommendations so make sure you bring a list of questions regarding foods to your doctor's and dietician's appointments.
  6. Thank you for sharing those web sites. I will look at them. We have been gluten free since December so it's been a while. Once, he had a gluten free beer, the kind that they take the gluten out, and his legs felt very heavy and had a more difficult time walking. I really don't want to experiment. Although I am very careful about what we eat, I am concerned that some of our medication could contain gluten. Is there any easier way to tell if medication has gluten. I did find a website which listed drugs and known gluten but every drug was on it or was determined to be gluten free
  7. I don't have celiac but doctors or amazed I don't so they told me to fallow the gluten-free diet like I have it... any way I was wondering if one can have corn, corn starch if they have fructose malabsorption. I am so confused on what I can and can't have.. i have an appt next week hopefully with a dietitian... also can you have sugar free stuff since it's not sugar.. I'm reading online and I'm getting a bunch of mixed info on both.
  8. Yesterday
  9. Hi all. Still feeling the same way this past week. I'm thinking of dropping dairy starting from today, I don't know if I have a problem with it or not, but I drink 2 coffees a day with milk. I'm just constantly tired all the time, and getting trough the day is pretty hard, I noticed a couple of weeks ago that my sleep was improving but the last couple of days I have been waking up at least 3 times during the night, then when I get up in the morning it feels like I have been hit by a bus, like I haven't slept at all. I keep waking up during the night needing to drink water as I feel dehydrated, I don't know why as I drink 2-3 litres of water everyday
  10. About 30% of people have a gene for Celiac. They don't all have it because only about 1% of the population has Celiac. It is quite possible she has something else that is causing her trouble. Sometimes eliminating gluten helps that problem, like FODMAPS. If it were me, I would keep her strictly gluten-free for a year or so. See if anything develops. Then I would try her back on small doses of gluten. If it is something like FODMAPS, she may be able to tolerate some gluten after a while. I would do that for 3 months . If she is having issues I would then get her tested with a full Celiac panel and, if positive, an endoscopy. Even if the panel is negative, if she is having issues, I would pursue more testing, ends, colonoscopy, etc. For schools to take a gluten-free or any special diet seriously, you will need a doctors note. I am assuming US might be different in other countries.
  11. Hi- new here but have been reading a lot of posts (Long post, last two paragraphs have actual question) my four year old daughter probably has celiac but I don't know if I'll ever get a definitive diagnosis at this point. Backstory: growth Delays, GI issues and a few other symptoms as a baby/young toddler. Did not have blood work done but went straight to biopsy which was negative. Always still had suspicions that gluten bothered her. Started developing more symptoms around 3, by 3.5 they were pretty bad and her dr recommend eliminating gluten. (Blood in stool, rashes, low grade fever, joint pain, stomach pain and bloating, behavior issues) Everything cleared up quickly! Yay. Still had occasional gluten because I was under the impression it was "just an intolerance" and her symptoms kept up/got worse with each exposure. (Developed vomitting as most recent symptom) So I wanted to know if it was celiac. Can't do blood or biopsy since she's been mostly off gluten for months by this time. I really was hoping to have a concrete answer and diagnosis, So we did genetic testing recently. It came back positive for half of DQ2 (beta subunit). Her dr isn't giving her official diagnosis but says "she is at a fairly low risk" but with her symptoms doesn't that mean she has developed it??! Either way he says to keep her off gluten but I don't understand why he won't diagnose? Right now I am just telling people (besides family) that she has it because it's too hard to explain it all but do you think an actual diagnosis would be beneficial in any way? Should I push the issue with her dr?
  12. Thanks for the advice and encouragement, Gemini. I appreciate having additional insight into my situation. Celiac being the cause of my health issues makes more and more sense the more I learn about it, and eliminating gluten sounds more and more like the right choice for me.
  13. The topic of this forum is "Celiac Disease - Publications & Publicity," so certainly it fits in here, and in fact, this topic is designed specifically to handle any media coverage that relates to celiac disease and/or the gluten-free diet.
  14. We use Florajen 3 as well. Most pharmacies keep it behind the counter so be sure to ask.
  15. 62 yr old woman...celiac?

    I have to agree with Gemini, you must not go gluten free until you've had an endoscopy with biopsies (first you get the blood work done, then you get your confirmation by a follow-up endoscopy), it's the reaction to the gluten that creates the antibodies' you won't get that reaction if you don't eat gluten. It might seem inconvenient, but in the long run it will be worth it.
  16. Probiotic Help

    Hi Mom...I take Florajen 3. It has worked really well for me. It is kept refrigerated. I have a hard time finding it where I live so I usually have to order it.
  17. Hi monkeyloaf......with a positive tTg and EMA, that is a slam dunk for Celiac Disease. It doesn't matter that they are weakly positive, a positive is a positive with Celiac! With a positive EMA, I am sure you will show damage on biopsy BUT if it happens that damage is patchy and they miss those spots, please do what you already stated and go strictly gluten-free. You have Celiac! Couple that with Type 1 diabetes and other relatives with Celiac, it is of the utmost importance that you be gluten-free. Your intuition is talking to you on this so these words you spoke are very smart! I am sorry you have both AI diseases but with the right diet, you are going to be feeling so much better so hang in there!
  18. I'm still awaiting the results of my biopsy. I have Latent Autoimmune Diabetes of Adults, which is basically type 1 diabetes diagnosed as an adult. (I was 32.) I have second degree relatives with celiac, although, my mom and my sister have yet to be tested. My mom's side of the family has a variety of autoimmune issues. My tTg-IgA was weakly positive (7.5), my DGP IgA was weakly positive (26), and my EMA was positive. My GI MD said he could see some inflammation on my duodenum during my EGD. I desperately want an answer to the issues I've been having. My primary complaints have been fatigue and joint pain, so I hadn't really considered celiac, thinking my GI issues were due to exhaustion. I am thinking I may stay gluten-free regardless of the biopsy results. I've been feeling better since cutting out gluten immediately after my EGD. I also feel like my lab work, diabetes, and family history are enough to warrant caution. Any thoughts or advice on this would be greatly appreciated. Thanks!
  19. I have Celiac and I am looking for a really good probiotic. I have taken several different probiotics over the last year. Can anyone recommend a good brand. My local health food store said I should be taken ones that are kept in the frig. Any advice would be helpful
  20. 62 yr old woman...celiac?

    Sass.......please do not go gluten free until you have done a complete Celiac panel and possibly a biopsy for Celiac Disease. I know it is hard when you have extreme symptoms but I think it important to try and get an official diagnosis. Doctors do that to us older ladies and there is no excuse for that behavior. If you do not get results from your doc, then I would suggest a new doctor. Really...it is that important. https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ I would take this information to your doctor and demand a full panel. Do not take no for an answer. I am not hopeful as anyone who would prescribe tranquilizers to someone with your symptoms is an asshat. If you noticed that much of a difference between partial gluten-free and regular diet, then you probably have some degree of an issue with gluten. But you must be very willing to go strictly gluten-free and not cheat in order to feel better and many people feel that an official diagnosis will help them do that. FYI....I was diagnosed via blood work only. I failed all tests except the tTg/IgG by huge numbers and had all the symptoms of classic Celiac. That was enough for me because like you, I was really sick with extreme symptoms for a long time. I have never looked back and never cheat. If there had been any discrepancy on the blood work, I would have gone for the biopsy. Do the panel and see what it comes up with. Good luck!
  21. With funds from the German Research Foundation, the Universities of Mainz and Hohenheim join forces to study wheat sensitivity in search for better tolerated wheat varieties. View the full article
  22. But why is that important to Celiac. Com? And there are more than one video and people who have seen her. But why is her bakery problems on here? the same thing has happened to other gluten-free baking company and we didn't report on it several times. Is it just because JE is an actress?
  23. until
    The GFAF Expos are the largest and fastest growing special diet consumer events in the US. Started in 2007, the events are professionally managed and have expanded from one to seven cities throughout the United States. In addition to meeting the needs of the Celiac community, the Expo welcomes those with gluten sensitivities, auto-immune/inflammatory diseases and autism. What do you get with your Expo Ticket? Entry into the 100+ booth vendor fair Valuable coupons at the vendor booths Samples from the vendors Discounted products available for purchase Informative classes related to the gluten and allergen-free lifestyle Free reusable bag to carry your goodies The chance to meet your favorite vendors, authors and bloggers Cost of admission is $5 for kids and $20 for adults. For more information, visit the event website at http://gfafexpo.com/locations/worcester-ma-2016/
  24. Olivia....what country are you located in? I just bought a bag of regular M&M's from the vending machine at work. They are the milk chocolate ones and it is a 1.69 oz. bag. The allergy warning states: Contains milk and soy. May contain peanuts. The "best before" date on it is for April of 2017 so this is a recent bag.
  25. Getting a diagnosis like celiac an be overwhelming because it's so complex and there's a lot to learn. If you're unhappy with your doctor, switching to a new one and/or getting a second opinion are options. It's really important to find someone you feel comfortable with who listens to your concerns. That being said, as you're preparing for your next appointment, take time to write down any questions that come up as you go about your day beginning to manage your condition and track any symptoms you're experiencing. Did your doctor discuss lifestyle changes and treatment options with you? Here are some examples of things to ask: What tests do I need? What treatment options are available? Should I take nutritional supplements? Are there any dietary restrictions that I need to follow? How will I learn which foods contain gluten? Should I see a dietitian? Can you recommend nutritionists who work with celiac patients? The Celiac Foundation is another resource. Their website has lots of information and resources. There's also the Celiac Support Association – they have local chapters, or the National Foundation for Celiac Awarenes. And check out magazines like Gluten-Free Living, Delight Gluten-Free and Living Without.
  26. Totally agree Cristiana!
  27. Icelandgirl and I often remark, "There's always something [to be worried about]"! Whilst is obviously important to have all these tests and there is good reason to check them (one reads that very occasionally doctors miss something) it has done my health anxiety absolutely no favours having blood test after blood test!
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