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Showing content with the highest reputation since 01/12/2010 in Posts
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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 -
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 -
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 -
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 -
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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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...
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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 -
7yo struggling!
wellthatsfun and 3 others reacted to Scott Adams for a topic
It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out"...4 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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@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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I was diagnosed with Celiac 4 years ago and went completely gluten free but still had issues with nausea, diarrhea and occasional sharp abdominal pain. Just by chance my sister told me she had tested positive for fructose malabsorption because she was having similar issues. I decided to test and was also positive. I had never heard of it, but once adjusting...4 points
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Everything Worse After Celiac
T burd and 3 others reacted to heathers430 for a topic
Hi—sorry you are miserable. I am newly diagnosed as well. I can tell you that I have multiple food intolerances on top of celiac. What you are describing reminds me of when I add something to my diet that is an intolerance. I wonder if something you are eating to replace gluten foods is making you sick? For example I found out I can’t tolerate almonds. Th...4 points -
Availability and prices of gluten-free Canyon Bakehouse bread
Penelope Stout and 3 others reacted to Stephanie Bach for a topic
THREE BAKERS is equal or better than Canyon Bakehouse or Udi's and slightly cheaper by approximately .50 or more. I used to buy at least 8 loaves/mo. of the 7 Grains when available. Unfortunately, their breads are also small. That's too bad. I have started to wean my family off breads because I cannot afford the high prices, especially with today's food prices...4 points -
gluten-free Hot Dog and Hamburger Buns
Ginger38 and 3 others reacted to icelandgirl for a topic
Hi Ginger! I use either Udi's or Canyon hamburger buns... My family loves both. Depending on what I'm in the mood for I either 1.wrap them in foil and warm them in the oven, 2. put them on a baking sheet opened up (this toasts them nicely or melts cheese in top... Also depending on what I'm in the mood for), 3. Add them to the grill when the burgers...4 points -
Anger, Quick Temper, Depression
hazelhardisty and 3 others reacted to gfgypsyqueen for a topic
Anyone else have varying levels of gluten reactions? I know when I've been seriously glutened. I practically pass out, vomit, diarrhea, etc. When I touch gluten, my hands break open and bleed. But sometimes I just have a nasty temper, which is not like me, with no other signs of gluten. Everything and everyone makes me really mad. Little issues really make...4 points -
Suggestive but not conclusive…now what?
Mary corey and 3 others reacted to jordan-fre for a topic
Imo from my own experience, suggestive should be treated as conclusive. I was given the suggestive diagnosis 13 years ago and just last week got news that my celiac disease is not in control (Marsh 3, active celiac). While I have been gluten-free, I was not diligent about cross-contact. In the back of my mind, this suggestive diagnosis I think gave me some...4 points -
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 -
Looking for helpful advice/ help...
cnazrael89 and 3 others reacted to knitty kitty for a topic
Welcome to the forum, @Beck123! Longtime DH sufferer here. I had to remove everything dairy from my diet. Not only am I lactose intolerant (I can't digest the sugar in milk, lactose), I am sensitive to the protein in milk, casein. Not only does milk cause continuing inflammation and damage like gluten, dairy is high in iodine. I also found...4 points -
Testing for comorbid auto-immune disorders?
knitty kitty and 3 others reacted to trents for a topic
https://ods.od.nih.gov/factsheets/Niacin-HealthProfessional/#:~:text=High doses of nicotinic acid,12%2C28%2C36]. "High doses of nicotinic acid taken over months or years can also be hepatotoxic; effects can include increased levels of liver enzymes; hepatic dysfunction resulting in fatigue, nausea, and anorexia; hepatitis; and acute liver failure [...4 points -
Daughter seems to get sick even from touching gluten
knitty kitty and 3 others reacted to cali5960 for a topic
Hello! my daughter was diagnosed 7 years ago when she was only 8 years old and she is very sensitive to gluten. You may not know this but it takes time for the intestines to heal which for us was around a year and a half. We also had to change any thing that came into contact with her skin or in the air (like hairspray, deodorant and even candles). We...4 points -
Dealing with the Hopelessness
knitty kitty and 3 others reacted to Awol cast iron stomach for a topic
Sorry to read you are struggling. Many of us have been there. You are not alone. It is frustrating, and isolating. It was really difficult to lose long time friends, or no longer be able to eat out. The hardest was when my family of origin refused to come to a gluten-free BBQ I was hosting, if I would not let them bring gluten to it. You read that...4 points -
I just want to update for anyone who is interested: My gastro said that with elevated ttg-igg, presence of genetic factors for celiac, and current symptoms make him 95% confident I have celiac disease. I am scheduled for an endoscopy where he is going to take ~16 samples and observe the damage. I feel I am in good hands with someone as thorough as he...4 points
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Is Kirkland Signature Shampoo still gluten free?
Anita Drouin and 3 others reacted to Mama C for a topic
I just called the number on the bottles of shampoo and conditioner. They said that one ingredient was changed but they are both still gluten free. Yay!4 points -
are you going to take the vaccine
Dtoc and 3 others reacted to TinafromArkansas for a topic
Absolutely not will I be taking a unvetted vaccine that has the potential for lifelong illness and/or death for a common virus with a 99.9% life expectancy.4 points -
In what ways did you feel better after going gluten-free?
ajesmond3 and 3 others reacted to Lucille Cholerton for a topic
After going gluten free, my headaches disappeared immediately, my sinusitis and drippy nose cleared up within 2 weeks, my constipation cleared up within a month, my severe rheumatoid arthritis cleared up totally in 5 months. I have now been gluten free for over 30 years!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 -
Pissed off at sensitisation
GFinDC and 3 others reacted to cyclinglady for a topic
I get your ranting! It is hard to remain gluten free, but it is doable and you can heal (I did!). Try to think of implementing strategies that can keep you safe and still experience fun, social situations. When I go out for coffee, I play it safe and just get coffee and add cream. I still get to hang with my friends. I always keep a cereal type...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 -
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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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 -
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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There is no science to this nonsense that our body sees coffee as gluten and reacts with an antibody response. The company that first started this nonsense to sell “lab tests” actually admitted that they tested people using some instant coffee that was found to contain gluten. But people love a good conspiracy theory and to pretend to be experts on the...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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Thanks, me too, with enough information I'm hoping to piece the puzzle together in a way doctors seem unwilling to put the effort into doing (something that really has surprised me during this process) Definitely got it unfortunately, blood test, two gluten challenges and biopsy doesn't leave much doubt Couldn't put it better myself! Won...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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duuuuuuuude. you are speaking to a forum of celiacs. we *alllll* face these difficulties. are you saying my life sucks? i went undiagnosed for TWENTY FIVE YEARS. i am 6 years into the gluten-free lifestyle and have not developed any other major difficulties. in fact, all those terrible things (symptoms, tons of them) went away. you won't see...4 points
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Keep pursuing this. It's not normal and you need to get to the bottom of it ASAP. We kept goofing around with antibiotics (at my own insistence.) until it was too late. I'm not trying to scare you. It might very well be a bad infection, but mine turned out to be cancer.4 points
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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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So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
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I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
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By xxnonamexx · Posted
Thanks for the info. I have been taking the ones you recommended but when I saw this I was curious if it was something else to add to the journey Thank -
I used to be able to get the Rivera yougut i havent been able to get it lately. I like getting it did say it did say gluten free. I just looking for a good yogurt that gluten free that i can add some fruit and nuts to any suggestion would be helpful thanks
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