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Showing content with the highest reputation since 01/12/2010 in all areas
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Newbie Info 101
Klugett and 38 others reacted to IrishHeart for a topic
You have been diagnosed and you do not know what to do next. First, do not panic! and Welcome to the Forum! I have posted this information in pieces and parts on this site during the past year so many times and some newbies suggested it would have been helpful if they had seen it ALL --right away after they were DXed.... so, I thought, why not paste...39 points -
Scott Adams' Story of His Diagnosis of Celiac Disease
J1707 and 29 others reacted to Scott Adams for an article
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Forbidden Gluten Food List (Unsafe Ingredients)
Jelly bean and 13 others reacted to Scott Adams for an article
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This particular forum on celiac.com is described on the main page thus: It is not intended to be about products that are labeled gluten-free. If it were that simple, we would not need this discussion forum. Here, in the Gluten-Free Foods, Products, Shopping & Medications section, we talk about products that are not labeled gluten-free, but...11 points
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Supplements for those Diagnosed with Celiac Disease
Zuma888 and 9 others reacted to Scott Adams for a topic
I am often asked about which supplements I take, so I'm sharing it here. I think you'll find a big variation of what supplements different people on this forum take, but here is a breakdown of the many I take. This regimen has worked well for me, but it has take many years for me to add and remove different ones. Also, all of this list may not apply...10 points -
What Are the Symptoms of Celiac Disease?
Zuma888 and 9 others reacted to Scott Adams for an article
10 points -
There's hope for you yet!
Aussienae and 7 others reacted to paisleydaisy for a topic
Hi! Just a positive note from someone 4 years into the gluten-free diet who had questions about worsening food intolerances, no change in lifelong insomnia and ongoing panic attacks (which came out of the blue a few years prior and lead to full blown agoraphobia quite suddenly 'for no reason'). It ALL went away. It took a while but all went away and feels...8 points -
Newbie Info 101 - Start Here
Debbiere and 6 others reacted to Scott Adams for a topic
For those just starting out, please see this article: And this post, which is rather old, but mostly still useful:7 points -
Gluten-Free Alcoholic Beverages
SwagQ and 6 others reacted to Scott Adams for an article
7 points -
A Journey Through the Nexvax2 "Celiac Disease Vaccine" Clinical Trial
Sandykr and 6 others reacted to Kelly Carter for an article
7 points -
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Aretaeus Cappadocia and 5 others reacted to Scott Adams for an article
6 points -
Ten Things to Try if You Accidentally Eat Gluten
Grlybrainiac and 5 others reacted to Jefferson Adams for an article
6 points -
Nutrient Deficiencies and Celiac Disease: Understanding the Connection
Chaparra and 5 others reacted to Scott Adams for an article
6 points -
Celiac Disease Treatment and Continuing Symptoms
Rejoicephd and 5 others reacted to Mary Anderies for an article
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Intestional Permability could a Vitamin Deficiency Cause It
ch88 and 5 others reacted to ravenwoodglass for a topic
I developed DH as a young child after being impaled. It was one of my first celiac symptoms. At that time I was eating lots of cereals and breads that were fortified. There is no way I was niacin deficient. Unfortunately we have two posters who seem to think that niacin is a cure-all for celiac. I do hope newbies are not mislead into thinking a few vitamins...6 points -
Overwhelmed and unable to accept
Martin-0123 and 5 others reacted to Ennis-TX for a topic
.....OK NOW, I blunt ass%$@# coming out here. I feel like I need to go punch your lights out drag you to my house and force you on the gluten-free diet for you to heal. I would also show you a social life can exist. We would make meal prep boxes, shakes bars, our own breads live a normal like bloody diet with gluten-free versions of foods. Show you that YOU...6 points -
Domino's "Gluten Free" Crust
Oscar and 5 others reacted to IrishHeart for a topic
I'm with you, Karen. Can't seem to get people to understand the following: Gluten FREE eating means Gluten FREE. FREE of GLUTEN. ENTIRELY. It doesn't mean "maybe, kinda, sorta" It doesn't mean dabbling in it or "gluten lite" it doesn't mean 4 out of 7 days and on holidays we take breaks. It doesn't mean use non-gluten grains, but...6 points -
We Need To Start A Thread On Stupid Stuff Doctors Say!
Dima Salahi and 5 others reacted to ElseB for a topic
Gastroenterologist walks into the room, looks at my chart and says: "You have Celiac Disease. Go look it up on the internet. Come back in 6 months". Then walks out. That was the appointment where I was given the diagnosis. Another doctor: "since the Celiac came on so quickly, I'm sure it will disappear just as quickly."6 points -
Safe Gluten-Free Food List (Safe Ingredients)
SwagQ and 4 others reacted to Scott Adams for an article
5 points -
Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of the general population carries one or both of these genes. However, only about 1% of the general population ever develops...5 points
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Psychiatric and Neurological Manifestations of Celiac Disease in Adults
Dtoc and 4 others reacted to Jefferson Adams for an article
5 points -
More info about Vitamin Deficiencies
placey0918 and 4 others reacted to knitty kitty for a blog entry
I went through very similar symptoms, being misdiagnosed and told it was all in my head for most of my life. It's not all in our head. It's what's NOT in doctors' heads. Doctors don't think of vitamin deficiencies as causes of symptoms like we have. Doctors are trained to prescribe pharmaceuticals in medical institutions funded by pharmaceutical companies...5 points -
I am a school nurse (Pre-k-8th grade) and a parent of a child diagnosed with celiac disease in 4th grade (6 years ago). I have gone through this battle many times. When my daughter was a student here, there were strangely 7 kids with celiac disease out of 500. (4 in her grade of 50 kids...which is odd...but seemed to help my case). In 2009 revision...5 points
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Terrible Neurological Symptoms
Beverage and 4 others reacted to HectorConvector for a topic
I'm just reviving this thread to update with *factual* information. Not assumptions, or anything vague but known facts. 1). results of an MRI scan show a herniated disc in the lower spine area. However, the letter from the doctor says they don't believe this explains the symptoms. However, the symptoms were very severe and violent when I did weight training...5 points -
Worried
Scott Adams and 4 others reacted to Wheatwacked for a topic
Natural tendency to fear worst case. So many on this forum were misdiagnosed only to learn it was Celiac Disease all along. To really get a scare look up "200 symptoms of Celiac Disease". It can mimic anything because of autoimmune response and vitamin deficiencies. Once you start GFD and or correcting malnutrition you start healing so you will need...5 points -
How do I deal with people who are ignorant of Celiac's disease?
TurtleSeaba and 4 others reacted to GF-Cate for a topic
Hi Turtleseaba, I don't know if it would help (and maybe you have already tried this), but perhaps a phone call (or email) to the pantry manager/ director/lead volunteer on a day that is not a distribution day to talk, explain your situation and explain about celiac and ask if it's possible to receive safe food and/or have gluten-free food service aside...5 points -
Hello, I have found everyone's responses very helpful and it's reassuring to know I am not alone in this journey. I am now in week 2 of cutting out dairy in addition to the gluten. Also, starting this week I am eating only what I make for myself. I have a glimmer of hope as I do feel as though my symptoms are improving. Thank you to all of you for the...5 points
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Writer looking for people with celiac and other autoimmune conditions
Angeline Fergusson and 4 others reacted to trents for a topic
I have a suggestion for you. Sit down and develop a list of more detailed, targeted questions you would like to have data on that would provide a framework for people's responses. I feel like your current questions are too vague and too general to be very helpful to people trying to provide input for your writing project or to you trying to distill and...5 points -
Dear egs1707, You will not like what I have to say. But, like Squirmingitch (whose entire post I agree with), I am only trying to help you. 1. You have already been given all the best advice possible by the nicest people. 2. You seem unable to accept this advice; so I won't focus on being nice. 3. I believe you are clinically depressed...5 points
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Domino's "Gluten Free" Crust
Fire Fairy and 4 others reacted to kareng for a topic
"Domino's and the NFCA found that while the crust is certified as gluten free, current store operations at Domino's cannot guarantee that each handcrafted pizza will be completely free from gluten," the company's news release said." I hate these pseudo gluten-free menus. It confuses the non- gluten-free people who think we can eat at these places...5 points -
Lectins are carbohydrate storage proteins. Different plants have different lectins. Gluten is a lectin, but not all lectins are gluten. Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it. During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes. In...4 points
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Which Fast Food French Fries are Gluten-Free?
Grlybrainiac and 3 others reacted to Jefferson Adams for an article
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Flight from Dubai to LA Turns into a Gluten-Induced Nightmare for TikTok Star
Awol cast iron stomach and 3 others reacted to trents for an article
She should sue them.4 points -
just wanted to share that i’ve been on my gluten-free journey now for 22 months! i was diagnosed in Dec 2021 with a marsh score of 3-4 flattened villi - i recently saw my GI dr for a blood test to check my levels such were in the 200s and can proudly report that both my levels are in the normal range and come up as negative in my system - 11.2 and 11.6 ...4 points
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Wondering if there’s anyone else like me
cnazrael89 and 3 others reacted to trents for a topic
"Just like "friends" taunt recovering alcoholics, your friends will taunt you and test you with gluten." Unfortunately, this can be true.4 points -
The What's For Dinner Tonight Chat
Cookingpapa and 3 others reacted to jess-gf for a topic
I thought it might be fun if we had a thread where we shared what we're cooking up for dinner:) I am not an experienced cook so coming up with gluten free menus for me and my boyfriend feels like a challenge. It's also weird since I only started eating meat since my diagnosis, so I have 0 experience preparing meat. Tonight I'm going to try that Tinkyada...4 points -
The mystery effect upregulated genes in celiac patients will protect celiacs from the zombie virus!4 points
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I was diagnosed with Celiac Disease at age 64. I realize in retrospect that I had misdiagnosed DH my entire life, but it got much worse in later life, and I finally saw a dermatologist who recognized it. I went on a strict gluten-free diet, but the DH persisted for two years nonetheless. I stuck it out with rather ineffectual steroid creams , and refused...4 points
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Issues with gluten free bread?
Awol cast iron stomach and 3 others reacted to ravenwoodglass for a topic
If the rash is DH then be aware that those of us who have DH can be very sensitive to even small amounts of cross contamination. It can take some time for the antibodies to leave the skin so you may get mystery rashes for a bit. Do make sure that you have done all you can to eliminate the chance of CC in your home. You need your own new jars of nut butters...4 points -
I’m 7 years out since diagnosis but I can tell you with certainty that I felt worse the first 9 months after diagnosis and going strict gluten free. Your body is detoxing in so many ways. Stay super strict and stick it out....you will be amazed at how well you will feel when you really begin to heal from the years of damage. Nourish your body with clean, ...4 points
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amen to this - show of hands of who found this out the HARD WAY...? this past thanksgiving, i did everything gluten-free - finally perfected my mom's stuffing, brined my bird, found gluten-free fried onions for that green bean casserole that i don't even like (lolz - everybody: suffer! hahahahaaa) and outlawed those crescent rolls. nobody died! everybody...4 points
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Do you ask friends and family to be careful what food they bring?
loganpb and 3 others reacted to cyclinglady for a topic
My house is gluten free. I do not allow any gluten inside — ever. I do allow it when we are having a party outside and I set up an extra table to hold those foods to prevent cross contamination. When that type of party occurs, I toss or send home ALL the food with non-celiacs. When I invite people over and they ask what they can bring, I u...4 points -
Hmm...my affairs in order. OK. Alan on Sunday, Bob on Monday, Steve on Tuesday...Oh, not those affairs. OK, now that I've softened things with a lame joke, the doctor really did say that. Turns out I have terminal cancer. Lymph. "Very advanced". They say they can't cure me but they might (MIGHT) be able to prolong my life. No thanks. There's a reason...4 points
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Ditto many of the above, but wanted to say, I had many of my food intolerance issues just crop up after going gluten free. I also had several of my food allergies come up after getting glutened...oddly the allergies conside with something I was eating when I got glutened. Just a observation but seems when then immune system goes on the attack with gluten...4 points
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Obviously, you have a lot more issues with him than just this. I feel bad for the kids as an early diagnosis could be so helpful to their current and future health. If it were me, I would get another doctor and get the ones with the obvious issues tested. It would be nice if he agreed, but if I think it's for my kids health and future success in life...4 points
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Celiac is the only problem that's single handedly destroying my life right now so would respectfully disagree with you there, sorry. Was actually reasonably looking forward to 2016 at the time before all this started, never saw it coming that's for sure. Sure, I can safely say that's been the aim of everyone on this thread. Nope, they're just...4 points
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Taco Shells
RadDecor and 3 others reacted to Scott Adams for a topic
In general using your gut to decide if something is gluten-free or not isn't the best approach, nor is it at all accurate. You could simply have gotten a bug and the symptoms appeared around the time you ate this meal...but I'm not trying to diagnose you here...4 points -
Glutened By Vapors
dilettantesteph and 3 others reacted to msmini14 for a topic
Gemini and Irishheart. I did not respond to this post to stir up everyone4 points -
I don't think the semantics are relevant here. You got sick. You identified the situation that made you sick. I'm guessing you will avoid such situations in the future. In the end, it doesn't matter what anyone else says, or does. You are responsible for your health, and you seem willing to take that responsibility seriously. You're doing the right...4 points
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Newbie Info 101
Bobbie Jo and 3 others reacted to IrishHeart for a topic
Additional products people ask about: San-J Organic Tamari Gluten Free Soy Sauce is available. McCormick single spice/herbs and vanilla are gluten free. For spice blends, be sure to read the labels!! Spice blends can not hide grain (gluten). Seasoning blends are a whole different ball game.4 points
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By knitty kitty · Posted
@xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables. Not only are these high in fiber, they also are good sources of magnesium. Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation. Thiamine Vitamin B1 and magnesium work together. Thiamine in the form Benfotiamine has been shown to improve intestinal health. Thiamine and magnesium are important to gastrointestinal health and function. -
Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
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By knitty kitty · Posted
@EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet. Vitamin C and the eight B vitamins are needed to help the body clear histamine. Have you been checked for nutritional deficiencies? -
I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia. going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored?
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Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
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