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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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Rachel_Austin88

Newly Diagnosed And Having A Really Hard Time With The Idea Of "never" And "forever"

By Rachel_Austin88, in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)

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Rachel_Austin88    0

Rachel_Austin88
Posted

Hi, my name is Rachel, im 25 and I was just diagnosed with Celiac on Friday. When she called me into her office to give me my blood test results i knew that something was wrong. I guess i will start with some back ground first. I have always had stomach problems my whole life but i always just dealt with it. I had my gall bladder removed at 17 and i have my first child at 18. And the stomach pain, diarrhea ect just never got better. It always came in waves, then when away. I thought it was because i was lactose intolerant so i cut out dairy about 6 months ago but that didnt help either. For the past two months i have been constantly tired, even if i got 10-12 hours of sleep. and the worst part is in the past year i gains about 65 pounds. I knew this massive unexplained weight gain was unhealthy, but nothing would make me loose weight, i just gained. I believe that i developed a small case of depresson due to the weight gain and lack of motivation to do anything or go anywhere. Anyway, my entire eating habit has always revolved around pastas bread and baking. I love to cook. EVERYTHING. I know that i should look at this as a new opportunity to try and learn new things, but its hard for me. This weekend i have been living off of water and baked chicken and some rice and lettuce. I dont know where to start with thinking about grocery shopping, i dont know what is and isnt safe to eat. i know that i need to be suspicious of eating out anywhere, but im basically suspicious of eating anything i make also. i dont know what spices are safe, i dont know what foods are safe, i dont know where hidden gluten is. Im starting to feel a little better, (the stomach cramping is gone but im still totally exhausted) and i dont want to accidentally eat something. ANY help or guidance, tips on where to start, anything i would really appreciate. Thank you!!  

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kareng    2,078

kareng
Posted

Here is a good place to start:

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

This notion of hidden gluten is fueled by Internet rumors. In the US & Canada, wheat must be clearly labelled in the ingredients.

You don't have to be perfect the first few days. It can take a few months to figure it all out. Is your doctor sending you to a GI doc for an endoscopy? If so, don't stop eating gluten until after the procedure.

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notme!    294

notme!
Posted

welcome to the best club you never wanted to join  :/

 

you said it yourself, foodie :)  it *is* a good opportunity to learn new things to cook.  i felt the same way:  i was always looking for new restaurants/ new recipes/ things to make.  i had just gotten pretty good at making 'gluten' bread and i was pretty proud of myself, then, BOOM that was the end of that!  it takes some getting used to, but trust me, once you get the hang of it, cooking and eating will be second nature.  like a "new" normal.  plus, you will feel so much better soon you will never want to feel bad again.  i know, the always and forever sure suck, but now you will have more and better forever.  good luck and ask questions.  mostly everybody around here is pretty helpful.

 

ps - check the cooking/baking board 'what's for dinner' chat.  pretty good dinner ideas/free entertainment lolz

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Rachel_Austin88    0

Rachel_Austin88
Posted

Here is a good place to start:

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

This notion of hidden gluten is fueled by Internet rumors. In the US & Canada, wheat must be clearly labelled in the ingredients.

You don't have to be perfect the first few days. It can take a few months to figure it all out. Is your doctor sending you to a GI doc for an endoscopy? If so, don't stop eating gluten until after the procedure.

My pcp said my blood test were off the chart on 4 of the ways they tested so she said that there is no need to send me to a GI, that she has no doubts or second thoughts about positively diagnosing me with celiac. The frustrating part is she didnt really tell me to go from here, she just told me that i need to stay away from gluten. 

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cyclinglady    969

cyclinglady
Posted

My pcp said my blood test were off the chart on 4 of the ways they tested so she said that there is no need to send me to a GI, that she has no doubts or second thoughts about positively diagnosing me with celiac. The frustrating part is she didnt really tell me to go from here, she just told me that i need to stay away from gluten. 

Welcome.  Believe me, this is the best site for support.  I've been glued to it for the past few weeks, gleaning information and helping others (which really helps me!)   Continue to read up the "101" posting Kareng recommended.   You don't have to live on chicken, rice and lettuce!  Just focus on whole foods.  I made tri-tip (seasoned just with salt and pepper since I'm allergic to garlic), sweet potatoes, green beans and a nice salad.  Dressing was olive oil and balsamic vinegar.  Had strawberries for dessert and then some peanut butter cookies that I made.  I bake all my gluten-free items and it's easy since I've been making gluten-free food for my hubby for the past 12 years.  You just need to get over the shock and take a little time to grieve, but it it won't last long because you'll start to feel better and it's so worth it!  

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GFinDC    637

GFinDC
Posted

..she just told me that i need to stay away from gluten. 

 

No problem, just cross to sidewalk on the opposite side of the street when you see gluten coming! :)

 

Many doctors are pretty clueless when it comes to nutrition issues and especially eating gluten-free for a celiac.  If you went to a celiac center you'd probably get better advice and be referred to a nutritionist.  Unfortunately many nutritionists are not up to speed on gluten-free eating either, unless they work with celiacs regularly, like at a celiac center.

 

You need to avoid consuming an wheat, rye, barley and oats for at least few months.  Some people recommend avoiding oats for 6 months to a year.  There are about 10 percent of celiacs who also react to oats, and most oats are cross-contaminated (cc).  The easy and simple way to avoid the things you need to avoid is to cook whole foods from scratch.  Take food with you when you go out, fruit or nuts etc, or  a cooler.  After a while you will learn how to deal with eating gluten-free and what works for your body.  All of us are a little bit individual when it comes to what works for us.  The first months are often kind of rough as your body is healing and adjusting to not having villi damage and gluten.

 

Unexplained weight gain can be a symptom of thyroid issues, (hypothyroidism).  Thyroid issues and celiac often go together.  There is also another auto-immune disease called Hashimoto's Thyroiditis that causes damage to the thyroid.  If you have throat swelling and or pain it may be that.  Your doctor can test for it by looking for elevated TPO antibodies.

 

Gall bladder issues are also somewhat common with celiac disease.

 

If you are busy, then cooking a lot of food on the weekend is a good idea. Freeze some and eat it during the week.  Don't forget to check vitamin pills for gluten-free status, and meds.

 

Many grocery stores have a gluten-free section these days or the mark gluten-free items with a special tag, often green.  gluten-free breads / baked items are often kept in a freezer section.  There are celiac support groups in many areas.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

What's For Breakfast Today?

http://www.celiac.com/gluten-free/topic/81858-whats-for-breakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.com/gluten-free/topic/87765-what-did-you-have-for-lunch-today/

What's for dinner tonight chat?

http://www.celiac.com/gluten-free/topic/75238-what-are-you-cooking-tonight/

Dessert thread

http://www.celiac.com/gluten-free/topic/93840-whats-for-dessert-tonight/page__pid__802399#entry802399

Easy yummy bread in minutes

http://www.celiac.com/gluten-free/topic/56641-easy-yummy-bread-in-minutes/

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Gemini    832

Gemini
Posted

Please go and buy this book to read.......http://www.reallifewithceliacdisease.com/  It is important that you learn the diet correctly and learn about the disease itself.  Only then will you realize that it's not the end of the world and there is plenty for you to eat.  But this book earned high marks from many actual celiacs so it's worth it.  Doctors know nothing about nutrition or the gluten-free diet so there is a certain amount of learning you need to do on your own.  We are always here to answer questions too.  :)

 

Everyone has given good advice but I disagree with some minor details....I had no villi left when diagnosed.  My gut was completely trashed. I did eat some processed, gluten-free foods and did fine with them.  Try to stick with dedicated facilites, if you can but if you are craving a cookie or a brownie, your healing will not be set back if you eat some.  I don't even think you need to avoid dairy at first, just gluten.  Many people can tolerate dairy just fine, others cannot.  I think it best to isolate one food group at a time, unless your symptoms persist for too long.  I did fine for 2 years after going gluten-free and then realized I had a problem with dairy, on return of symptoms.  I can tolerate small amounts but not a lot.  If you take away too much food from people when it may not be necessary, then they will resent the diet and be angry.  People are different and what some cannot tolerate, may not be the same for everyone.  You are already having trouble adjusting a bit, which happens to many, and I don't want to see you go off the deep end here!  You love to cook...that is half the battle with Celiac.  Knowing that, with time and learning, you will be eating awesome food in no time.  We can also help you with cravings and what the best gluten-free products are available.  There is some excellent bread out there and making your own is very do-able!

 

Hang in there!  

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Go To Topic Listing Celiac Disease - Post Diagnosis, Recovery/Treatment(s)

  • Who's Online   8 Members, 1 Anonymous, 1,111 Guests (See full list)

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  • Recent Articles

    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. 
    In their study, 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. They found that E. gallinarum triggered an autoimmune response in the mice when it traveled beyond the gut.
    They also found that the response can be countered by using antibiotics or vaccines to suppress the autoimmune reaction and prevent the bacterium from growing. The researchers were able to duplicate this mechanism using cultured human liver cells, and they also found the bacteria E. gallinarum in the livers of people with autoimmune disease.
    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."
    Team research team plans to further investigate the biological mechanisms that are associated with E. gallinarum, along with the potential implications for systemic lupus and autoimmune liver disease.
    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.
    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com