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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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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Aussie Peg

Australians And New Zealanders Hellooooooo :)

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I tried the purebred long rolls today. It was fine until about the third mouthful....it was so soft and tasty that I thought I must have grabbed someone elses lunch. I didn't they are just really tasty.

I also tried the Livwell naan bread which was perfect with my curry.

Will now stop going on about these brands- at least until they bring out something new.

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For anyone who might be travelling to the U.K- While Marks and Spencer don't really have online shopping they do have a list of food that does not contain gluten. It is very extensive and seems to include things like chesse that in most cases would be naturally gluten free. Something else to note- in their stores they don't really have a health food isle but rather have loads of gluten free marked food scattered around the store. It's not as complicated as some of the stores that do it here, as that is the setup for the whole store. So for example gluten-free pasta can be found in same part as normal, as can cakes. Also, at least when I was there a few years ago, they label things like crisps and mousses that mostly in here you would need to read the ingredients list for.

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I am so totally in love with the pure bred range. I have missed sausage sizzles so much but lately I have been having them on the roles (I split them in half and toast first) and they are SO GOOD. Plus I've been eating toast like there's no tomorrow. You don't want to know how much weight I have gained, OMG....

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I am so totally in love with the pure bred range. I have missed sausage sizzles so much but lately I have been having them on the roles (I split them in half and toast first) and they are SO GOOD. Plus I've been eating toast like there's no tomorrow. You don't want to know how much weight I have gained, OMG....

It's amazing. I love the crust on the bread rolls. I keep double checking the packet to make sure it says gluten free not guilt free or something simillar. I've even had non gluten-free people ask if "Are your sure, you can have that".

I've had the livwell rolls this week, which are also very tasty. They can sometimes be little crumbly and hollow but sitll taste great.

I'm off to England and Ireland in a few weeks- I'm gunna get loads of gluten-free jaffa cakes and have found a few places that do CRUMBED gluten free fish and chips. Also a bakery in Brixton that only sells gluten free stuff. My only problem is having enough time try everything

I think I'm going to come home a different shape to when I leave.

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Ooh, you lucky thing. Have a great trip! I loved the gluten free brownies that they sold in Sainsburys. I ate so many of them when I was there in 2010. Plus you can bring back stuff at much better prices than we pay here, customs don't mind packaged baked goods (I speak from experience, haha).

crumbed fish and chips would be amazing. Haven't had that in years. I miss potato scallops :-(

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Ooh, you lucky thing. Have a great trip! I loved the gluten free brownies that they sold in Sainsburys. I ate so many of them when I was there in 2010. Plus you can bring back stuff at much better prices than we pay here, customs don't mind packaged baked goods (I speak from experience, haha).

crumbed fish and chips would be amazing. Haven't had that in years. I miss potato scallops :-(

Yea. I sometimes buy the bayview fish but it's not the same as getting it hot from a shop. What Kind of things did you bring back? I've tried to find out what you can't bring back but the information is rubbish. I've had people bring back bisuits and bready things and all seemed ok.

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I meant to bring back the brownies but I uh, ate them all on the way. But I brought back english muffins (from the UK) and I regularly bring back Udi's bread / bagels, Chex cereal and snickerdoodles from the US. I've even brought back lara bars from the US once because they were so much cheaper there and I thought they might be an issue but it was fine (thank god as they were scattered all through my bag and I would've had to do some majory searching if they wanted them chucked out). I always declare them and customs ask a few questions (and I think they got quite a bit of amusement from my 'please let me keep my gluten free bagels!!' pleas) but they've always said it's fine.

Also a friend has posted me snickerdoodles and betty crocker brownie mix and while customs sometimes open the parcels, they've never confiscated them. So you should be fine with bread, cake type things etc. It's way more than I could say eat in transit but no where near like I'm planning on opening a shop with it. I'd imagine those kinds of large quantities would be an issue.

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At Nandos today I noticed packets of chips that are marked as gluten free. There was a mild one and hot one. Also something I discovered recently is that Red Rooster hot chips seem to be gluten-free by ingredient. They do battered stuff as well so there might be cc there.

I was looking at the Mcdonalds Uk site the other night and under the ingredients list for the fries it states that they are sometimes fried in the same fryer as the vegie pattie. They then helpfuly list the ingredients for that item right next to it. From what I remember it seemed ok. That's the first time I've ever seen something like that.

I got really annoyed earlier tonight- I wanted some tin souped (yes I know it's summer). Any way I picked up a few tins that were fine except for yeast from Barley. Why can't they just use gluten-free yeast? I know it might be slightly more expensive but surely the fact that more people could eat would even it out? I really don't like Lazuupa ones and they are about the only packet ones in the "normal" aisle labeled gluten-free.

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In woolies tonight I came across coco pop breakfast drinks. Next to the up and go etc. I read the ingredients and they seemed to be gluten-free. Just checked the website and it would seem to suggest the same. http://www.kelloggs.com.au/en_AU/product-search.pt-Beverages*.html.html#prevpoint contains link to product listing. be great if someone could take a look a confirm if I'm just blind and GLUTEN is clearly written somewhere. I find it interesting if not as coco pops (last I checked) have gluten. There also seems to be a nutrigrain one that would be ok.

 

I'm betting they don't taste the best but I really struggle with breakfast, especially as for me it is usually deskfast. What does everyone do for breakfast on the go? Not really a fruit and youghurt person.

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It is a chocolate flavoured milk ..... Coco Pops® Chocolatey Liquid Breakfast contains milk, sugar, vegetable fibre (inulin), cocoa, flavours, stabilisers, vitamins & minerals  - no rice bubbles at all ... Inulin is similar to psyllium as it provides soluble dietary fibre. The product is gluten free with only milk listed as an allergen.
 

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I guess I just always assumed that there was gluten in the flavourings of those cereals as well as the actaul wheat etc. I tried the nutrigrain ones today. It doesn't taste like I remember the milk from nutrigrain tasting but it's been so so long since I had it. It wasn't bad. Something to add to breakfast anyway.

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Have been pleasantly surprised for the third time this after finding another "didn't think I would be able to eat that food" Apart from the milk drinks I found a weight watchers frozen meal and now some frozen potato products.

 

Also found purebred hot cross buns in Coles and one Woolies that was stocking Livwell ones. 

 

Kind of makes up for the fact that the few tinned soups that used to be ok now containing various gluteny things. WHY?

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Can anyone shed light on the meaning in the details of gluten free labelling here in Australia? Does "gluten" (with 0 or nil detected or something similar) in the nutrition label demonstrate with certainty that something has been tested? And what does it mean when something is labelled "gluten free" but does not list "gluten" in the nutritional analysis?

We have been in Australia for over a year now and are doing better than ever. We love how much easier gluten free eating is here (compared to the States). Sometimes I worry that Australians don't know how good they have it here. Why are Australian coeliacs pushing for relaxed standards? Or is that a generalisation perpetuated by the Coeliac Australia?

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Can anyone shed light on the meaning in the details of gluten free labelling here in Australia? Does "gluten" (with 0 or nil detected or something similar) in the nutrition label demonstrate with certainty that something has been tested? And what does it mean when something is labelled "gluten free" but does not list "gluten" in the nutritional analysis?

We have been in Australia for over a year now and are doing better than ever. We love how much easier gluten free eating is here (compared to the States). Sometimes I worry that Australians don't know how good they have it here. Why are Australian coeliacs pushing for relaxed standards? Or is that a generalisation perpetuated by the Coeliac Australia?

Technically In Aus if something is labeled as gluten free then that is what it means. Be slightly careful if it is a imported product though as on rare ocassions you will find something labeled gluten-free but has the warning about been processed on other lines.

 

The standards we had a few years ago were already fairly strict but then they got even stricter.  I think it had more affect on products that aren't lableled as gluten free but are if you read the ingredients list. I think perhaps it was to help people who were extremely sensitive but it ended up making it harder for those who aren't.

 

It does make me wonder sometimes how different countries can have different levels of "gluten" that are ok. For example in some countries, specially grown oats are considered gluten-free but not here.

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Are Panadol mini caps gluten free? Anyone had any experiences with them?

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Are Panadol mini caps gluten free? Anyone had any experiences with them?

 

According to their website they are gluten-free. Check medication boxes carefully, it is often written on them somewhere- just not anywhere obvious.

As with foods, it is best to always check each time that the product is still ok. Also when checking websites for ingredients ensure it is the site for whatever country you are buying the product from. Also if overseas read the ingredients before buying the product even if it seems to be exactly the same.

 

Don't mean to sound like I'm treating you like a idiot- I just noticed you are a new member and not sure if you are new to gluten-free as well.

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For anyone who was watching Good Chef Bad Chef this morning the Lasagne they made was not gluten-free as they put spelt flour in. It's a pre recorded show so there really shouldn't be any excuse. Just unacceptable.

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Hello from the deep south off New zealand southland Invercargill :) 

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A big hello to you, peter/southland.  Not many Kiwis around here any more, so another voice from the mainland (or should I say Te Wai Pounamu now ;) since South Island is apparently not "official") is a welcome addition.

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There doesn't seem to be many of us left here at all. :P

 

A big hello to you, peter/southland.  Not many Kiwis around here any more,

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I went to Aldi tonight and found a bunch of things from their Has No range. I bought chocolate cake mix, rice porridge and instant chicken flavoured noodles. Only tried the noodles so far. They are pretty good. They didn't all stick together like the fantastic ones do. Also they don't taste as salty to me.

 

They also had sweet and savoury biscuits and some cereal. Apparently they only realease the range for a limited time each year. Seems a bit of a shame, while most products seem to have similar available in other places a bit of brand variety would be nice.

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I think the has no range is permanent now!, seems to be. There is no Kiwi's left because they all moved to the big dry island.

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I think the has no range is permanent now!, seems to be. There is no Kiwi's left because they all moved to the big dry island.

 

Not all of us, just the ones looking for a bigger buck :D (of the dollar variety, in case that was misconstrued :P ).  Some of us are still here on the Shaky Isles, in fact even in the heart of Shakyland :rolleyes:

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I'm new here and thought I'd say hi!

I'm in a very confused state at the moment. My 2 year old son had the bloods done about a month ago and his gliadin iga was 5 (negative) but his ttg iga/igg was >300 (very positive!!). My GP was happy to diagnose coeliac on that but my paed wants the biopsy done. The gastro is trying to fit us in before the 9th may.

Did anyone get diagnosed without the biopsy? Did anyone have the biopsy and it not be coelaic but something else?

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Hello!

I am from Brisbane and newly diagnosed coeliac. I am in the process of coming to terms with how much this is going to change my life and trying to find out as much I can about the disease.

I hope to use this forum for info and guideance as I have found a lack of Australian coeliac forums.

Looking forward to talking to you all. Apologies if I ask stupid questions for a bit.

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  • Who's Online   6 Members, 1 Anonymous, 348 Guests (See full list)

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    Jefferson Adams
    Celiac.com 04/26/2018 - Emily Dickson is one of Canada’s top athletes. As a world-class competitor in the biathlon, the event that combines cross-country skiing with shooting marksmanship, Emily Dickson was familiar with a demanding routine of training and competition. After discovering she had celiac disease, Dickson is using her diagnosis and gluten-free diet a fuel to help her get her mojo back.
    Just a few years ago, Dickson dominated her peers nationally and won a gold medal at Canada Games for both pursuit and team relay. She also won silver in the sprint and bronze in the individual race. But just as she was set to reach her peak, Dickson found herself in an agonizing battle. She was suffering a mysterious loss of strength and endurance, which itself caused huge anxiety for Dickson. As a result of these physical and mental pressures, Dickson slipped from her perch as one of Canada's most promising young biathletes.
    Eventually, in September 2016, she was diagnosed with celiac disease. Before the diagnosis, Dickson said, she had “a lot of fatigue, I just felt tired in training all the time and I wasn't responding to my training and I wasn't recovering well and I had a few things going on, but nothing that pointed to celiac.”
    It took a little over a year for Dickson to eliminate gluten, and begin to heal her body. She still hasn’t fully recovered, which makes competing more of a challenge, but, she says improving steadily, and expects to be fully recovered in the next few months. Dickson’s diagnosis was prompted when her older sister Kate tested positive for celiac, which carries a hereditary component. "Once we figured out it was celiac and we looked at all the symptoms it all made sense,” said Dickson.
    Dickson’s own positive test proved to be both a revelation and a catalyst for her own goals as an athlete. Armed with there new diagnosis, a gluten-free diet, and a body that is steadily healing, Dickson is looking to reap the benefits of improved strength, recovery and endurance to ramp up her training and competition results.
    Keep your eyes open for the 20-year-old native of Burns Lake, British Columbia. Next season, she will be competing internationally, making a big jump to the senior ranks, and hopefully a regular next on the IBU Cup tour.
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    Jefferson Adams
    Celiac.com 04/25/2018 - A team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. The research could be helpful for treating type 1 diabetes, lupus, and celiac disease.
    In autoimmune diseases, such as type 1 diabetes, lupus, and celiac disease, the body’s immune system mistakenly attacks healthy cells and tissues. Autoimmune disease affects nearly 24 million people in the United States. 
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    The team found that administering an antibiotic or vaccine to target E. gallinarum suppressed the autoimmune reaction in the mice and prevented the bacterium from growing. "When we blocked the pathway leading to inflammation," says senior study author Martin Kriegel, "we could reverse the effect of this bug on autoimmunity."
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    This study indicates that gut bacteria may be the key to treating chronic autoimmune conditions such as systemic lupus and autoimmune liver disease. Numerous autoimmune conditions have been linked to gut bacteria.
    Read the full study in Science.

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

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    • You could very well have celiac disease, but there are 200 symptoms attributed to celiac disease and those often overlap with other illnesses.  You could get tested, but all celiac testing requires you to be on a full gluten diet for 8 to 12 weeks prior to a blood draw (it can take time for antibodies to ramp up and spill into the bloodstream).    You have been off for a month and it is possible that you could have healed.   Consider getting back on gluten and get tested.  Since you have Gastritis, maybe you can get a GI referral and an endoscopy to biopsy the stomach and the small intestine.  Only two weeks on a gluten diet is required for that procedure.      Learn more about testing: http://www.cureceliacdisease.org/screening/  
    • I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands 
    • Welcome!   With a sister who has celiac disease, you are at a much higher risk of developing it.  I would go for the complete 12 weeks.  Why?  Because doctors recommend anywhere from six to 12 weeks for the blood tests, but there has not been many long term studies to back up the claims.  Best to play it safe.  It sounds like you are not suffering too much (I had no GI symptoms and just anemia when I was diagnosed).  Ask your PCP to run the full panel, including  the DGP and EMA tests.  Why?  Not all celiacs test positive to the TTG, like me!  If your Kaiser doc refuses, please ask if you can be referred to a GI and select one who handles celiac patients.  Some celiacs are even seronegative!  In that case, going to an endoscopy is necessary.  Keep in mind that you might just be developing it or know that if everything negative now, you can still develop it in the future.  First-degree relatives should get tested every few years even if there are no symptoms.   What if your PCP refuses even after you show him the printed data supporting your claims (and the ones I made...so hit Dr. Google)? Get to another PCP or put your request in writing  via the patient portal or a registered letter.  Be nice.  Support your claims.  Ask for the full panel or to be referred to a GI.  In writing, they have to respond.   I do know that the TTG catches most celiacs, but not all.  If celiac disease is still suspected, you should move to the next series of celiac tests.  Unfortunately, to keep costs down, Kaiser just orders the TTG for initial screening.  You have to get around that.  I found that out when family  went in for testing and they had Kaiser.   Advocate for your health!  Document!  Save and print all test results and maintain file.   Take care!  
    • hi All, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease. That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me. This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better. I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off. I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway.  It wasn't too late!  One week later. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.   I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.   Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange.  So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!   Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.     Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have. so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases. sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.   this is just the short version  but I've tried to include important info.  Anyone else have a similar story in any way?
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