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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
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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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Gluten-Free Food Ingredients That Can Trigger Celiac Disease and IBS-like Symptoms
ShariW and 2 others reacted to Scott Adams for an article
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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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Supplements for those Diagnosed with Celiac Disease
Zuma888 and 2 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...3 points -
7yo struggling!
Oldturdle and 2 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"...3 points -
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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FDA's Inaction on Gluten Labeling Fails to Protect Celiac Patients (+Video)
KelleyJo and 2 others reacted to Helen Vajk for an article
Amen. Even worse than the food labeling is the near-complete absence of medication labeling.3 points -
Family education
knitty kitty and 2 others reacted to cristiana for a topic
@sillyyak52 Welcome to the forum! I'm just about to go away for a couple of days but read this and just had to reply. I am so sorry for what you are going through... it is really tough. Perhaps finding a short video online which explains the seriousness of celiac disease might help. Just sit your family down and say, "Please just watch this...3 points -
Being a burden to family/friends
Awol cast iron stomach and 2 others reacted to dublin555 for a topic
I totally agree, it’s so much more than just the physical struggle that occurs, there is the emotional struggle that goes along with it. It’s almost like you’re always navigating people who are uncomfortable with your needs and that pressure really wears you down. The fact is, the one that really did care will understand. This has nothing to do with you b...3 points -
Is this safe for someone with celiac disease?
knitty kitty and 2 others reacted to RMJ for a topic
I am also asymptomatic. Not everyone with celiac disease reacts the same way to the same amount of gluten, so it is impossible to say for you whether or not such small traces of gluten would be safe. I am tested for tTG-IgA and DGP IgA and IgG annually. My DGP IgA went up once when I was using a certain brand of supposedly gluten free flour, it went...3 points -
Hi @DayaInTheSun Welcome to the forum! I've been a Mod on this forum for some years now and your feelings are shared by many of us. I am not sure how long you have been diagnosed, but in my own case I do find that time has helped. It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac...3 points
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Two things: 1. If you are using drops 3x a day you should be sure to use preservative free. The preservatives themselves can cause irritation. 2. If the problem does not resolve, you may want to have a rheumatologist check for Sjogren's. There appears to be a relationship between celiac and Sjogren's.3 points
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Vomiting - celiac or constipation
Scott Adams and 2 others reacted to sh00148 for a topic
Morning All, Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation. Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start...3 points -
Yes, get serum antibody testing done for celiac disease. You could also have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common...3 points
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Celiac Maybe a Possibility?
Aleda D and 2 others reacted to Wheatwacked for a topic
It seems you have proven that you cannot eat gluten. You've done what your doctors have not been able to do in 40 years. That's your low vitamin D, a common symptom with Celiac Disease. Zinc is also a common defiency. Its an antiviral. that's why zinc gluconate lozenges work against airborne viruses. Vitamin D and the Immune System+ ...3 points -
Lymph nodes in neck + thyroid issues
knitty kitty and 2 others reacted to RMJ for a topic
I’ve had on and off swelling of a salivary gland below my jaw - sialoadenitis. It was very visible when it swelled though.3 points -
Refractory Coeliac Disease research to reduce anxiety
DanteZaffar and one other reacted to MelissaClinPsyD for a topic
Hi everyone, I hope this is the right place to post this, I am new to the forum though hopeful my research is relevant to someone reading this. I am a Trainee Clinical Psychologist currently conducting research on Coeliac Disease at the University of Surrey and my research has been approved by an NHS committee allowing me to advertise online. My...2 points -
Inflammation and Menier’s disease link?
Scott Adams and one other reacted to nataliallano for a topic
Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.2 points -
Probably celiac but also confused
knitty kitty and one other reacted to terrymouse for a topic
Update: I got a call on Monday from the GI doctor's office, they had a cancellation and an appointment opened up for Tuesday. Not much time to prepare, but I went ahead and did it anyway. I haven't been gluten free at any point, but I haven't really loaded up as much as was recommended, either. It takes another 6-8 weeks to get the results, so I'd rather...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 -
Confused about my results
knitty kitty and one other reacted to Russ H for a topic
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Is Chipotle Gluten-Free? A Celiac's Guide to Safe Dining
M Savarese and one other reacted to cam6 for an article
A tip I have learned when placing an order using the app is to use this name on my bowl instead of my actual name: Gluten Allergy2 points -
Thank you for clarifying! Something to possibly consider as I continue on my “non-gluten” quest and if I do not improve, but being new to this whole realm and already overwhelmed and stressed, this would have pushed me over the edge right now. 🥹2 points
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Guidance on next steps after the lab tests
Scott Adams and one other reacted to Beverage for a topic
My D was always low. It got better with gluten free diet, but was always below range or barely in range. I tried increasing D vitamins, found that K2 helps absorption of D. It improved a bit, yet remained on low end of ok range. After covid and bad flu years, i really wanted to get my D way up. We live in the Pacific Northwest, do lots outside 3/4 of...2 points -
fed up italian
knitty kitty and one other reacted to Beverage for a topic
Oh gosh. I remember being shocked when my new doc said he thought I had Celiacs (went in bcuz kidneys were failing, no intestinal issues), but relieved at first to find an explanation for my issues. Then as I hit the library and the internet and read up on Celiacs, I got sooooo depressed and overwhelmed. Funny you say "is it an italian thing?" ... I'm not...2 points -
Hey all!
Scott Adams and one other reacted to Savannah Wert for a topic
Thank you! I’m currently the breadwinner as my husband is pursuing a finance degree so the nights that I am at work they can eat whatever my husband makes but when I am home we have gluten free meals and no complaints so far! I definitely don’t have a choice but to switch but I think slowly transitioning my family is good!😀2 points -
dermatitis herpetiformis and cross reaction?
knitty kitty and one other reacted to MO1984 for a topic
oh my goodness! I kid you not it took maybe 30 hours after stopping the drink for the rash to start to clear. I think I will try the matcha version and hope it’s just the coffee issue, because it was helping my energy so much. BUT now I know to keep a close eye for the mushroom negative effect… thank you so much!!!2 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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