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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
Barbra S and 8 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...9 points -
What Are the Symptoms of Celiac Disease?
SunshineFace and 8 others reacted to Scott Adams for an article
9 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 -
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 -
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 -
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 -
I personally feel that we should be happy that they voluntarily let us know about the shared equipment (or facilities) ; since the equipment is thoroughly cleaned between runs, they are not obliged to. I worry more about the companies that change the ingredients without letting anyone know, just to keep you on your toes A market I buy from makes...6 points
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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 -
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 -
Psychiatric and Neurological Manifestations of Celiac Disease in Adults
Dtoc and 4 others reacted to Jefferson Adams for an article
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 -
Safe Gluten-Free Food List (Safe Ingredients)
SwagQ and 4 others reacted to Scott Adams for an article
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 -
I was and am almost completely ostracized by my family and friends.....I find this forum to be more of my family now days. I actually feel more welcome here. >.< does not help I was adopted as a baby but when the rest of the family learned I had a genetic disease like this on top of autism...I was dropped and ignored pretty much and everyone stays away...5 points
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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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Wine Barrels Sealed With Flour Paste
ravenwoodglass and 4 others reacted to Jestgar for a topic
Bottom line, if it bothers you - don't drink it. If you are super sensitive, or early in the gluten-free process, you might want to avoid drinking in general, or at least some of the wines others have had issue with. You can test specifics for yourself, when you're up for it.5 points -
Wine Barrels Sealed With Flour Paste
dilettantesteph and 4 others reacted to JNBunnie1 for a topic
I will repeat myself. We need to be able to come here and report something made us sick, safely, without being blown off. I have lost count of the number of people who have reported a gluten reaction to wine, and they deserve better than to have the 'experts' on this board tell them they are imagining it. Everyone reading can see both sides of the issue...5 points -
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 -
Non-Specific White Matter On Mri? Anyone Else Have This?
squirmingitch and 4 others reacted to Takala for a topic
I had a positive for the brain lesions, aka "bright spots," which were not the same type as seen in MS. Had quite the falling out with the nasty, idiotic neurologist who found this and still insisted it had nothing to do with my diet, as she had spent the past year testing me for "other things" instead of what I told her I already had and had been tested...5 points -
@Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found...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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GliadinX available
Tammy1969 and 3 others reacted to Scott Adams for a topic
In summary, AN-PEP has been shown in published scientific studies to break down anywhere between 1/8 to 1/3 of a slice of wheat bread! If that is not the most amazing development that has come along in the treatment of celiac disease and/or gluten sensitivity in the past 25 years, what is? How much cross contamination would you likely get in a restaurant...4 points -
Celiac.com covers relevant news about issues related to celiac disease and gluten-free food and living. To date, we have not covered news of the January 6th riots at the Capitol, simply because doing so without any relevant celiac disease or gluten-free angle would not be in keeping with our mission. However, the fact that the publisher of the largest...4 points
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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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Dr Joseph Murray (Mayo Clinic) on COVID-19 and celiac disease
Scott Adams and 3 others reacted to cyclinglady for a topic
Dr.Joseph Murray (Gastroenterologist at Mayo Clinic) was interviewed by The People's Pharmacy. His recommendations for celiac disease patients: COVID-19 infection can present as GI symptoms, such as diarrhea, abdominal pain, bloating, and loss of appetite. Don't assume your GI symptoms are from gluten exposure, get tested for COVID-19. Celiac disease...4 points -
Not Healing
squirmingitch and 3 others reacted to kareng for a topic
I don’t see any rudeness from anyone toward you. I just see people with lots of experience as Celiacs trying to help. Why scare people or make their lives harder than it needs to be? Most people cannot just replace the whole kitchen and appliances. And yet, they heal.4 points -
Do you ask friends and family to be careful what food they bring?
loganpb and 3 others reacted to Patty harrigan for a topic
I just don’t eat food that either my husband or I have prepared. People think I’m crazy but I’m the one who pays the price. Nothing is worth getting glutened....nothing. I travel with my own cooking equipment down to a sponge. I don’t eat out unless the restaurant has a separate prep kitchen. I’m 10 yrs into this and every time I get glutened my reaction ...4 points -
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 -
The way it really is
Maddiecl and 3 others reacted to cyclinglady for a topic
I disagree. I think you can manage or treat celiac disease with a gluten free diet. The article made a comparison of managing celiac disease like Type 2 Diabetes and Heart Disease which she says can not be managed on diet alone either. I strongly disagree with that! I have Type 2 Diabetes and have been managing with just diet alone for four years. No...4 points -
Five Year Post Diagnosis Endoscopy
cristiana and 3 others reacted to cyclinglady for a topic
Great news! I have have joined the “Peter club”! My villi are healed! The gluten free diet is working! I was diagnosed around 4/2013 with only a positive DGP IgA and a Marsh Stage IIIB (moderate to severe villi damage). My main symptom was anemia which I recovered from in just a few months with iron supplements. Minor symptoms persisted the fir...4 points -
Hello, fellow celiacs! It's been a long time since I last prowled this forum, newly diagnosed, terrified and looking for answers that my doctor couldn't provide. A wise soul with the user name Irish Heart told me at the outset to not let the disease define nor confine me. In the five years since my dx on 10/11/12 I've taken her advice to heart. With...4 points
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High Incidence of celiac disease in Long Term Study
plumbago and 3 others reacted to ravenwoodglass for a topic
Interesting. Not surprising to me that they found a higher percentage than they thouught. I think that percentage would be even higher if they tested older folks in their research.4 points -
Medical Marijuana - It Was Gluten All Along!
BlackShoesBlackSocks and 3 others reacted to vawksel for a topic
I'm sorry that I wasn't very clear :-). There is no gluten in Marijuana. I was smoking Marijuana to help with the symptoms of Gluten Intolerance/Celiacs. Marijuana greatly eased the anxiety that I had from eating bread. Now that I've been gluten free for a few months, I tried quitting pot and am finding it 100% doable. Before when I ate bread and...4 points
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By knitty kitty · Posted
I suggest you eliminate dairy from your son's diet next. Cow's milk protein, Casein, can trigger tTg IgA antibody production, the same as gluten, because casein contains segments of proteins that resemble gluten protein segments. Mucosal reactivity to cow's milk protein in coeliac disease https://pmc.ncbi.nlm.nih.gov/articles/PMC1810502/ I cannot consume dairy products. Some people find they can tolerate A2 dairy without a reaction. Corn is another frequently hard to tolerate food because the protein zein in corn also resembles the protein structure of gluten. Do research in Dr. Derrick Lonsdale and TTFD thiamine. Taking TTFD really can make a dramatic difference, speaking from personal experience. https://hormonesmatter.com/energy-deficiency-asd/ Keep us posted on your progress! -
By Scott Adams · Posted
It sounds like you're doing everything right with your gluten-free diet, yet still experiencing significant discomfort, which must be frustrating. Since your stool sample came back normal but symptoms persist, pushing for further investigation—like a colonoscopy or biopsy—is a reasonable next step. You might also want to discuss the possibility of additional conditions, such as IBS, microscopic colitis, or other inflammatory issues, with your doctor. Tracking your symptoms, diet, and triggers in detail could help identify patterns. Don’t hesitate to advocate for yourself—if your current doctor isn’t addressing your concerns, seeking a second opinion or a referral to a gastroenterologist could be beneficial. You’re right to seek answers, and I hope you find relief soon. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: -
Hi all, I was diagnosed with coeliac in August 2020. This was via a blood test, as it was during COVID, so I’ve never had a biopsy or colonoscopy or anything like that. I have been following a gluten-free diet since and would expect to feel much better, however, I am still experiencing issues with my bowels. Very strict, so I know there’s no cross contamination etc. It usually seems to be after I have had a bowel movement, my bowels feel on fire, cramping, sore and very uncomfortable. I know it isn’t normal, and isn’t right and I have saw a doctor before, I provided a stool sample and apparently everything was fine- but I know it isn’t. I am just wondering if anyone else experiences this? What would you advise I do in regards to seeing a doctor, I was thinking of asking for a colonoscopy or biopsy, I just want to know what is going on and why I’m still experiencing this. Any advice is welcome and appreciated.. thank you.
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By elizabethhousworth · Posted
Thanks. My son has been on B2 for two to three years now. I found literature about B1 earlier and put him on a B1 supplement, but not thiamine tetrahydrofurfuryl disulfide specifically. He also gets D and Magnesium. He goes to his doctor in June and I am going to ask for bloodwork to look for any deficiencies. What I suspect is that he is having a gluten-like reaction to the proteins in other grains. It is well known that a small percentage of celiac patients react to the protein in oats. Oats are in gluten-free Oreos, so we removed them. He got a little better. The science with oats is pretty solid. My son's nutritionist knows about it and it is easily found in PubMed. I suspect my son is reacting to something else. The next thing that I only just removed was corn, at least things with corn protein. I need to give that a couple of months. If that doesn't work, I will try to replace his cheese with goat-milk cheese, although that will be hard. My son was migraine free for over a year on a strict gluten-free diet before this past fall. I can test his foods for gluten and I have given in to diet rigidity. He eats my homemade refried beans and rice for lunch every day, so his rigid diet contains pretty healthy components. Given his antibody levels (tTG-IgA very low) and that I tested everything under the son that he ingests when his migraines returned and nothing tested positive for gluten, I think he really is gluten-free. So my personal working hypothesis is that he is having a reaction to a similar protein, one in another grain. However, the neurologist sees migraines come and go in lots of normal people, so it might just be that he is now having multiple (3-10) migraines monthly and it is hormonal or weather-related or something that is entirely distinct from an antibody reaction. I just would like them to go away again, as would he. Thanks again! Elizabeth -
By knitty kitty · Posted
Welcome to the forum, @jamiet06, Yes, it does point in that direction. Your report says "Correlation with clinical findings and results of serological studies is recommended" is saying you should undergo a gluten challenge and be tested for antibodies associated with Celiac Disease. These antibodies are produced in celiac disease in response to gluten, but you have to eat generous amounts of gluten for the antibodies to show up in the bloodstream. A gluten challenge means you eat 10 grams or more of gluten (4 to 6 slices of gluten containing bread or equivalent or more) per day for a minimum of two weeks.
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