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Showing content with the highest reputation since 02/01/2025 in all areas
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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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Can You Develop Celiac Disease Later in Life? Adult-Onset Symptoms (+Video)
Russ H and 3 others reacted to Scott Adams for an article
Celiac.com 09/18/2025 - Many people believe that celiac disease is a condition that begins in childhood and that if you reach adulthood without symptoms, you are in the clear. This is a common misconception. In reality, celiac disease...4 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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Key word, "gluten-like". By the way, have you looked up Dr. Osborne's credentials and his background? He is a licensed nutritionist but his scientific? medical? clinical background is that of a chiropractor. He is not taken seriously by many experts in the medical and scientific community. If it is helpful to you to see these other cereal grain...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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Are Gluten-Free Processed Foods Making You Sick? (+Video)
Oldturdle and 2 others reacted to Scott Adams for an article
Celiac.com 11/27/2025 - The explosion of gluten-free products on grocery store shelves has made life easier for millions of people with celiac disease and gluten sensitivity. From gluten-free bread and pasta to cookies, crackers, and frozen...3 points -
Hi. So sorry to hear about your shingles. There is a lidocaine cream that you can get at Walmart that will help numb the pain. That's what I used for mine. It can't be put near your eyes or in your ears. I hope your doctor gave you valacyclovir which is an antiviral. It does lessen the symptoms. If it is in your eyes, see an ophthalmologist. They have...3 points
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@HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...3 points
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Gluten-Free Food Ingredients That Can Trigger Celiac Disease and IBS-like Symptoms
ShariW and 2 others reacted to Scott Adams for an article
Celiac.com 10/01/2025 - For people with celiac disease or gluten sensitivity, avoiding gluten is the foundation of treatment. However, many discover that even when they completely remove gluten from their diet, they still experience ongoing...3 points -
Taking Probiotics but Still Getting Sick After Gluten – Advice?
knitty kitty and 2 others reacted to trents for a topic
I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where...3 points -
Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but...3 points
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My only proof
Colleen H and 2 others reacted to Scott Adams for a topic
It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...3 points -
Not a scientific reply, but I thought I'd just chime in to reply the first part of your question: how long? Before I started to have gastric symptoms, I weighed about 66 kilos, and in the course of the following months, I seem to recall I lost about 6 kilos. From memory the last 2 or 3 kilos dropped off even when I was beginning to eat gluten free, from...3 points
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Welcome to the forum, @Crossaint! Are you living in the same home with your mother? Your experience with the cravings is very common in the celiac community, especially among the recently diagnosed. It might surprise you to hear this but gluten has addictive qualities much like opiates. It plugs into the same pleasure sensors as gluten in the brain...3 points
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Diagnosed gluten allergy but not Celiac
Barbra S and 2 others reacted to Waterdance for a topic
Thank you so much for this thorough and informative post. This information does help me to understand my body better. I will commit to a strict gluten free diet. I may not have a diagnosis but I know gluten is causing issues. The worst offender, white bread, causes a reaction within 20-30 minutes. Which I hate because I like sandwiches. Lol. Common sense...3 points -
Struggling to get into a good pattern
Beverage and 2 others reacted to Rejoicephd for a topic
Oh I have 2 dogs. And I just looked up the ingredients in their food and it does contain barley as a main ingredient. Maybe some other things too that aren't helpful but barley just caught my eye on a quick look. And yes I spend lots of time with them, they're always cuddled up on me. I even have wondered before if I was allergic to them and I take...3 points -
Diagnosed gluten allergy but not Celiac
knitty kitty and 2 others reacted to Pamela Kay for a topic
Waterdance, celiac disease is notoriously difficult to diagnose from symptoms alone. Symptoms of celiac disease are as varied as the people who have been diagnosed with it. AWOL has some good suggestions about the AIP diet, and I've included some food suggestions below, but I would like to give you a bit of information about how celiac disease develops that...3 points -
Struggling to get into a good pattern
knitty kitty and 2 others reacted to cristiana for a topic
The early days are often tricky for the newly diagnosed. There were times I thought I'd never feel better, but it just takes some people longer than others. Hang on in there, and keep posting with any questions as they occur or if you need any encouragement.3 points -
Struggling to get into a good pattern
knitty kitty and 2 others reacted to cristiana for a topic
Since I've been a member of this forum, I've seen some people write that they have not been able to tolerate corn, and others nightshades - tomatoes, potatoes, eggplant, and peppers (including bell peppers, chili peppers, and paprika). However, intolerances can be short term, just while you are healing. So bear this in mind if you start dropping...3 points -
I strongly agree with others about processed gluten free foods, like breads and pasta, being bad for us. Read the labels, full of this starch and that starch, seed oils that are inflammatory, etc. Before you were celiac, you probably wouldn't even touch something with those ingredients. I do much better with whole foods, meat, veggies, a little fruit. I made...3 points
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Celiac Disease Triggers Cognitive Deficit and White Matter Changes in the Brain (+Video)
Russ H and 2 others reacted to Purpletie3 for an article
I told my Doctors this years ago and they sent me for a sleep study and hormone tests. Even a mild cross contamination had me in a brain fog, losing my place in a conversation, inability to concentrate- at all, even messed with my walking and sometimes my eye sight and even speech. Definitely a dull version of myself. I was 30 years mis-diagnosed so there...3 points -
Personally, I would get a new GP. Advice to continue eating gluten, even after a Celiac disgnosis, is ridiculous. Clearly the GP knows nothing about the disease. That advice could be dangerous to your health. I too found out by accident. I was searching for help with ulnar neuropathy. The first doctor took xrays of my elbow and hand. Surprise, surprise...3 points
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Could you be having acid reflux? I used to get it soooo bad before I was diagnosed, now very rarely. I didnt have stomach upset, aka silent reflux, but pain in chest (thought I was having a heart attack) and food would get stuck from the esophagus irritation. The things here really helped, especially raising head of bed, sip of apple cider vinegar before...3 points
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Hi Mags, I was diagnosed almost 4 years ago at 57y.o, also of Irish heritage, my mom's from Co. Galway. Have your doctors run an immune globulin panel. My IgA was undetectable & that is what the usual bloodwork for celiac relies on. For example, my tTG IgA was below 2 & deamidated Gliadin IgA was 5, both in normal range. In other words, you do not...3 points
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confirmed via biopsy, quite depressed
knitty kitty and 2 others reacted to cristiana for a topic
We've definitely all had such thoughts. But as Scott says, it does get easier with time. I'm not sure where you are posting from but in England where I live, over the last ten years or so most things I missed at first now have gluten free substitutes. I still miss Twix bars, and chocolate Penguins (a type of biscuit) but I'm hoping sooner or later someone...3 points -
4 Years and very little progress
knitty kitty and 2 others reacted to cristiana for a topic
Hello there @maylynn I'm a slow healer from the UK. I sympathise. Despite three endoscopies which showed nothing wrong, I frequently suffered from a very sore stomach, bloating, feeling queasy. For some time I was taking the wrong iron supplement (Floradix instead of Floravital - the former has gluten in it, but the latter none). But...3 points -
Welcome to the forum, @Redlima! Not sure if this could relate to your issue but it is well-known by the celiac community that gluten has an opiate-like effect that causes some people to experience withdrawal symptoms upon going gluten free. This usually manifests itself within the first few weeks. So, I'm not sure that fits with your time frame. Also...3 points
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I went to France about five years after my diagnosis and at that time found I was reacting a lot to food that made no mention of gluten in the ingredients, and my antibodies were raised after my visit as I had my annual review just after the trip. I felt that food labelling wasn't as reliable as the UK, and cross contamination a more marked problem...3 points
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I went through issues with oats when first diagnosed. I thought I couldn't eat any oats at all, even certified gluten-free. Then I learned about purity protocol oats. The list here has gotten smaller through the years, so I check it every time I order. I had been ordering one brand on the list that was later found to contain lower levels of gluten. I...3 points
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I would say the server was in the wrong in this case if it weren't for the guy clearly lying. He was drinking beer with gluten. The man needs shamed for lying about a serious disease.3 points
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I’m terrified it’s too late for me😭
knitty kitty and 2 others reacted to NavyMom for a topic
Hi CathiJean, Wipe those tears my friend. Finding out that you have celiac just gave you the cheat code on how to start feeling better! It may feel like a loss right now, but honestly within 6 months you will start feeling better. Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime...3 points -
The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a...3 points
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Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this. I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them. Sometimes people just need a safe place to vent, and unfortunately...3 points
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A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)
Oldturdle and one other reacted to Scott Adams for an article
Celiac.com 01/05/2026 - Celiac disease is an immune-driven condition in which the body responds aggressively to gluten, a protein found in wheat, barley, and rye. This reaction damages the small intestine, leads to painful symptoms, and...2 points -
Unusual bright yellow but odourless discharge
Healthforme and one other reacted to trents for a topic
Welcome to the forum, @Celiac50! Vitamin A toxicity is not to be taken lightly. If you suspect that is the case, I would certainly discontinue the beta-carotene supplementation. Vitamin A from natural sources is unlikely to cause toxicity. I would also get labs done to check your levels. May we ask your age? It's been over a year since you began...2 points -
Diagnosed gluten allergy but not Celiac
knitty kitty and one other reacted to Beverage for a topic
For the blood screening test or any other testing, make sure you continue eating gluten every day until all testing is concluded. I'm traveling right now, but hopefully someone else can provide the link on how much you need. I think it's about 4 slices of gluten bread a day.2 points -
@alltheceliacquestions, 20ppm, even 10ppm will still cause reactions in the more sensitive subset of celiacs.2 points
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I remember reading an article summarizing testing done by Gluten Free Watchdog on several brands of dried lentils. They were all heavily cross contaminated with wheat and the commentary was to the effect that dried lentils in general were the most heavily cross contaminated product category in their testing data base. So, I would definitely not use any dried...2 points
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We had the follow up endoscopy 1 year out from the first one. We left that day and they said visually it looked good so he thought she'd be negative again. Results came back this week as celiac sprue present and level Marsh 3A. So she doesn't have much damage but she is now positive for celiacs... Just thought I'd post in case in takes anyone else a year...2 points
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Refractory Celiac disease - what to do
knitty kitty and one other reacted to Zuma888 for a topic
AIP really worked for me as well.2 points -
Depression after being glutened is definitely a problem. I have struggled with alcohol abuse in the past and being glutened was the worst and fastest trigger. I never go to pubs now, not because I don't drink, but because every time I went I lost a week due to cross-contamination. My father died of non=Hodgkins Celiac related disease. My daughter is...2 points
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Virus, celiac disease or both?
knitty kitty and one other reacted to trents for a topic
@Shining My Light, I am not a doctor or a trained medical professional of any kind. However, I was a hospital chaplain for many years and sat in on countless numbers of medical team meetings with doctors and nurses discussing the medical issues of their patients as well as tests administered and interventions applied. What I can tell you is that many diseases...2 points -
Does anyone here also have Afib
Scott Adams and one other reacted to Idnam for a topic
Oh my, I have always had the symptoms for B12 deficiency, which is why I had the blood test that led to my celiac disease diagnosis I had been taking B vits have been always been amazed that all ,my bloods were perfectly normal! I queried this many times with my doctor as to whether the B12 was active and being absorbed or whether it was just in my...2 points -
SSRI stopped working after gluten free diet due to Celiac diag
Redlima and one other reacted to Scott Adams for a topic
Your experience highlights a fascinating and often overlooked connection between gut health, mental health, and medication efficacy—something many in the celiac community encounter. When you removed gluten, your body likely began healing, which can dramatically alter nutrient absorption, inflammation levels, and even neurotransmitter production (like serotonin, ...2 points -
Curious if I should quit my job
Scott Adams and one other reacted to DebD5 for a topic
I 100% believe if you were sticking gluten items, especially flour, and breathed it in you could be glutened. I’m a celiac for almost 30 years. For the first ten years as a celiac I’d help my polish family make pierogis at Christmas time. I would only cook them at the stove and I didn’t touch anything with my hands using spoons. But the flour is in the a...2 points -
European travel with Celiac Disease
Scott Adams and one other reacted to CJF for a topic
Thank you for your response. I had read that they are more careful in the UK and the wait staff are much more aware. I always bring gluten-free snacks with me when I travel even here in the US. Airports are a nightmare to find anything that is gluten-free to eat. If you are lucky enough to find a Chick-fil-A in the airport the fries(chips) are a safe...2 points -
Hard Rock Cafe Customer Feels Mocked Over Celiac Disease
Karen B. and one other reacted to Kelsey Gratiot for an article
This is not true. The part is missing where the guy claims he has Celiacs but he's drinking a beer, eats half a sandwich and fries and then tells the girl he has Celiac's Disease and is not going to pay. This is actually someone pretending to have our disease and using it to get out of paying for his food. If he has Celiac's pretty sure the waitress would...2 points -
Celiac or not?
Scott Adams and one other reacted to Dc91 for a topic
Just had a letter through from the Celiac team, they’ve diagnosed me through my bloods, no endoscopy/biopsy needed. I guess I’ll be sticking around on this forum and I’m sure I’ll be back soon. thanks for all your help2 points -
Years of testing - no real answers
knitty kitty and one other reacted to Kiwifruit for a topic
Hi I just wanted to update you all and let you know that I finally have my diagnosis. 2 weeks ago I had my third gastroscopy and the biopsy confirmed the damage. Thank you for giving me the information I needed to advocate for myself when I a was a feeling so lost!2 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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