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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...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 -
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 -
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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I’m so sorry to read this. I know when I was diagnosed it was a struggle at first but my husband threw all our food away with gluten and now he is gluten free too. You really need support. Maybe you can get them a book to read about the disease? There are lots of gluten food recipes too. I pray you get the support you need.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 -
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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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 -
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 -
Undiagnosed NCGS - Advice and opinions on symptoms appreciated
sunflowers and 3 others reacted to knitty kitty for a topic
These are all symptoms of Thiamine deficiency. Thiamine can only be stored for three weeks. We can experience thiamine deficiency in as little as nine days. Our bodies need more thiamine when we are ill (like with Covid) or pregnant, are under emotional stress, or are outdoors in hot weather. Vitamin D deficiency and deficiency in Omega Threes...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 -
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 -
Healing and Cheating??
Sabaarya and 3 others reacted to knitty kitty for a topic
@Ginger38, The villi in our digestive tract can start growing back in as little as two weeks, but the damage to the underlying tissues can take much much longer to heal. Even after many years on the gluten free diet, microscopic damage in the underlying tissues can still be seen. About cheating, we've all fallen short....But...every time we...4 points -
Diagnosed with celiac a little too soon
frieze and 3 others reacted to Scott Adams for a topic
Oh, and you really don’t want to reach the villi damage stage if you can avoid it!4 points -
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 -
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 -
Celiac but my body still losing muscle or tissue? Why?!
knitty kitty and 3 others reacted to MisterSeth for a topic
you're not going to like it but those 2 slipups were enough to undo much of the work you were doing. the standard estimate is 3 months before you heal up with some people taking longer and some people (especially small children) recovering in a week. since you're shrinking and that MUST have something to do with caloric metabolism you probably have some B...4 points -
My understanding is DH is caused by IgA deposits in the skin, not by lack of niacin in the diet. If you have some info that contradicts that I'd be glad to look at it. By info I mean a study showing niacin deficiency causes IgA deposits under the skin and DH blisters. Otherwise I consider your claim that pellagra causes DH to be erroneous.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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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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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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Thank you, thank you, thank you for asking about this! I have these, too, and they are very distressing! Magnesium and sublingual B-12 seem to help with this for me. I also tested low in vitamin D, and it's possible that my supplementation with that has helped, as well. Just my experience...hope you find something in it helpful.4 points
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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 -
Doc brought food to a potluck meeting. Set down a bag of pita chips and said "these are gluten-free"...4 points
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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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I have found that in addition to gluten, I am sensitive to inulin/chicory root fiber. I wondered why I had gastrointestinal symptoms after drinking a Chobani yogurt drink - much like being glutened. Happened at least twice before I figured out that it was that chicory root fiber additive. I do not react to ordinary dairy, yogurt, etc. For the holidays, I will only be baking gluten-free treats. I got rid of all gluten-containing flours, mixes and pastas in my kitchen. Much easier to avoid cross-contamination that way!
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By Scott Adams · Posted
It's great to hear that your gluten-free journey has been going well overall, and it's smart to be a detective when a reaction occurs. Distinguishing between a gluten cross-contamination issue and a reaction to high fiber can be tricky, as symptoms can sometimes overlap. The sudden, intense, food poisoning-like hour you experienced does sound more consistent with a specific intolerance or contamination, as a high-fiber reaction typically involves more digestive discomfort like bloating or gas that lasts longer. Since the protein bar was the only new variable, it’s a strong suspect; it's worth checking if it contains ingredients like sugar alcohols (e.g., maltitol, sorbitol) or certain fibers (inulin/chicory root) that are notorious for causing acute digestive upset, even in gluten-free products. For your holiday baking, your plan is solid: bake the gluten-free items first, use entirely separate utensils and pans (not just washed), and consider color-coding tools to avoid mix-ups. Additionally, store your gluten-free flours and ingredients well away from any airborne wheat flour, which can stay in the air for hours and settle on surfaces. Keep listening to your body and introducing new packaged foods one at a time—it’s the best way to navigate and pinpoint triggers on your journey. -
By Scott Adams · Posted
Let us know how things turn out--good luck! -
thank you Scott! This is very helpful. I have a message out to my doctor and i think this guide will help me interpret the results! its very thorough.
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By Scott Adams · Posted
I agree with @trents, and encourage you to follow up with your doctor about getting a celiac disease blood test done. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.
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