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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
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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
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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
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
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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
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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
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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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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 -
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 -
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 -
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 -
The mystery effect upregulated genes in celiac patients will protect celiacs from the zombie virus!4 points
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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 -
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 -
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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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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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 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 -
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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Gluten Free Coffee
squirmingitch and 3 others reacted to Feeneyja for a topic
Geesh! I am not trying to diagnos. I was just adding to the information. I know that some of the folks here posting on this thread have neurological symptoms. My only point is that this CAN be an issue and that small amounts of cc are a problem particularly in those who have neurological symptoms.4 points -
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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Sick Just By Touching Or Smelling Gluten
Naomi Tucket and 3 others reacted to Stu for a topic
There are definitely different levels of sensitivity to gluten. True story: I go to the doctor's office. The nurse/receptionist hands me a pen and clipboard, and I take a seat in the waiting room to fill out the forms. Within a minute or so, I get a nasty tin-foil taste in my mouth and my lips begin to burn. First stage of gluten exposure? Nah... Couldn...4 points -
"Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.4 points
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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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By Theresa2407 · Posted
Maybe you have a low intolerance to Wheat. Rye, Barley and Malt are the gluten in Celiac disease. It has always been stated Wheat and Gluten, not just a Wheat intolerance. Barley will keep me in bed for (2) weeks. Gut, Migrains, Brain fog, Diahrea. It is miserable. And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow. Boy was he off. But at that time the US didn't know anyone about Celiac. This was the 1940s and 50s. I had my first episode at 9 months and did not get a diagnosis until I was 50. My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product. It was mostly the cereal industry. 3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction. -
Thanks much Scott. Well said, and heeded. I don't have Celiac, which is fortunate.
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By Scott Adams · Posted
Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that? Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day: -
By Scott Adams · Posted
It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day: -
By Scott Adams · Posted
There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
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