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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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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...3 points -
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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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...3 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...3 points
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New Study Reveals High Risk of Digestive Cancers in Patients with Celiac Disease
RobinGroenevelt and one other reacted to cristiana for an article
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...2 points -
Celiac disease does not damage the stomach. It damages the lining of the small bowel, the part of the intestines immediately below the stomach. Also called the duodenum. Do you know if biopsies were taken from this area to look for celiac disease?2 points
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Can anyone offer any advice/help please!
Beverage and one other reacted to knitty kitty for a topic
I agree with @cristianacristiana, @Scott Adams, and @trents. You probably weren't eating sufficient gluten for the test to be accurate. Ten grams of gluten for at least two weeks before testing is needed for accurate blood tests. Three gram of gluten is enough to make you feel unwell. Ten grams of gluten is required for the antibodies to leave...2 points -
Can celiac cause widespread pain??
knitty kitty and one other reacted to cristiana for a topic
Hello @Paula Andrews I started to get a whole host of new pains around the time of my diagnosis and afterwards, quite apart from the expected gastric pain. Pelvic pain was caused by bloating from dairy products; pain in my chest due to bloating caused by iron supplements; costochondritis in my ribs, which was a dull diffuse pain not emanating from the...2 points -
From: https://en.wikipedia.org/wiki/Gluten "Gluten is a structural protein naturally found in certain cereal grains. The term gluten usually refers to the elastic network of a wheat grain's proteins, gliadin and glutenin primarily, that forms readily with the addition of water and often kneading in the case of bread dough. The types of grains that contain...2 points
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Can celiac cause widespread pain??
knitty kitty and one other reacted to Beverage for a topic
I didn't have the typical intestinal symptoms before I was diagnosed, but had severe allergies, asthma, and failing kidneys. I often felt that horrible body achey felling like when coming down with a super bad flu. Now if I get glutened, I feel like I've been hit by a truck.2 points -
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.2 points
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Yes, lectins can be problematic for some people. IGG testing can be used to detect celiac disease but not IGE. IGE antibodies have to do with allergic reactions and ceilaic disease is not an allergy, it is an autoimmune reaction. The IGG tests are not as reliable for detecting celiac disease as are the IGA tests but they can be be very helpful, particularly...2 points
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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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Thanks for the information, knitty kitty. It helps bring some clarity and reduces the confusion that misinformation such as is contained in this thread title introduces into the community. People new to the celiac experience are already struggling to wrap their minds around not being able to eat just wheat, barley and rye any longer. We don't need to unnecessarily...2 points
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Oats gluten free?
Scott Adams and one other reacted to trents for a topic
Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new...2 points -
I’m terrified it’s too late for me😭
knitty kitty and one other reacted to jeema for a topic
@Cathijean90 It's pretty common to suffer from symptoms for a long time. I had symptoms for a decade before I was diagnosed and I think that is about average. The problem is the symptoms are often vague enough to be attributed to other digestive issues and that was the case with me. It was only after I found out I was anemic from routine bloodwork and...2 points -
Hiya..I was 48 when diagnosed two years ago and I was in right bad way but strict gluten-free diet you will recover I promise x2 points
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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...2 points
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Is Chipotle Gluten-Free? A Celiac's Guide to Safe Dining
Scott Adams reacted to cristiana for an article
Interesting idea @cam6!1 point -
Is Chipotle Gluten-Free? A Celiac's Guide to Safe Dining
Scott Adams reacted to trents for an article
@cam6, the problem I see with that is if multiple people call in an order around the same time using the name, "Gluten Allergy". You might get someone else's order.1 point -
Anyone Here Sensitive To Fillers Such As Cellulose?
Scott Adams reacted to ShariW for a topic
No problems (that I know of) to cellulose, but I have found that I have a "glutened" response to products containing inulin. Another thing to check for on labels!1 point -
Anyone gone through public school gluten free?
Scott Adams reacted to trents for a topic
@Bernade, you might find this helpful. Ultimately, it would be up to the parents of the students in question to begin dialog with school officials and get the ball rolling. But perhaps you could could pass this information onto the parents somehow:1 point -
Based on the vaccine injuries from mRNA vaccines during the COVID pandemic there is no way I would take this vaccine. Manipulation of genetic makeup? No way.1 point
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Under the current administration the funding could be pulled, which would be really bad for something that sounds so promising. Hopefully other countries will pursue this research.1 point
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Anyone Here Sensitive To Fillers Such As Cellulose?
Scott Adams reacted to cristiana for a topic
Funny you should mention this. Three times in the past I've had a similar reaction to glutening when I eat broccoli. People have suggested I try it again to make sure it is the problem but I have three distinct memories of meals containing broccoli which caused chills, feeling sick and diarrhea within an hour or two of eating (and this was before I was diagnosed...1 point -
Recently diagnosed with Celic disease
Scott Adams reacted to Babygirl877 for a topic
Thank you I know I will be ok and it’s a journey but I think gluten free lifestyle will help me with a little weight loss as well cause I struggle with this everyday. We don’t know what’s gonna be thrown at us.1 point -
Decreasing tTiga?
plumbago reacted to Scott Adams for a topic
In Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac...1 point -
What are the Odds of Developing Celiac Disease based on HLA-DQA/DQB Genotype?
Scott Adams reacted to Maria Deal for an article
I know, thanks, but I hate to start over again, he is my 2nd one who has tried to get me to eat gluten. I hate to find another one. He is referring me to an allergist- saying maybe it is something like the glyphosate? 🙄 Yes, I have allergies to food ( my mouth reacts ), but my GI reactions are most definitely in the Gluten Sensitivity or Celiac realm. Th...1 point -
Alcohol
Scott Adams reacted to James47 for a topic
Thanks Scott and others who replied,, funnily enough I had milk other day and noticed my energy just dropped.. obviously bad for you but sugary sweets I Def noticed an almighty energy drop so I dont even have anything like that no more . Hope you are all feeling well1 point -
I’m terrified it’s too late for me😭
Scott Adams reacted to trents for a topic
Keep us posted as to your progress, Cathijean90.1 point -
Can anyone offer any advice/help please!
Scott Adams reacted to cristiana for a topic
Hello @Sammy Web and welcome to the forum. Just one question - you say you pretty much cut out gluten and caffeine. Were you eating gluten when you had your coeliac blood test? Cristiana1 point -
@Liquid lunch, so glad you're going to continue with the thiamine! Good to keep in mind that tannins in tea and coffee can break thiamine in two, rendering it useless. Caffeine can destroy thiamine, too. Take your thiamine separately from these drinks, by an hour or so. Green tea (not macha, though) only has about thirty percent of caffeine as black...1 point
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Is McDonald's Gluten-Free? A Complete Guide to Safe Menu Options (+Video)
ShariW reacted to Scott Adams for an article
Celiac.com 03/07/2025 - For individuals with celiac disease or gluten sensitivity, dining out can be a daunting experience. Fast food restaurants, in particular, pose unique challenges due to the high risk of cross-contamination and limited...1 point -
Is McDonald's Gluten-Free? A Complete Guide to Safe Menu Options (+Video)
ShariW reacted to Scott Adams for an article
Unfortunately this can happen at ANY restaurant, especially McDonald's, thus the disclaimers in the article.1 point -
Negative biopsy and seeking doctor recs in Los Angeles
Scott Adams reacted to trents for a topic
If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.1 point -
Oats gluten free?
Beverage reacted to Lori Lavell for a topic
In fact ALL grains contain different forms of gluten that go by different names. Corn contains Zein and Rice contains Orzenin. We all need to realize that a very small amount of any of these grains can cause continued systemic inflammation which is not optimal for allowing the body to heal itself.1 point -
Test results
Scott Adams reacted to Levi for a topic
Search “deamidated gliadin Abs, IgG is 26.6/abnormal high” online for articles on your exact question above, and I’m sure this forum has an expert in explaining your test results as well.1 point -
Help Understanding Test Results
Scott Adams reacted to trents for a topic
The elevated TTG-IGG could be caused by celiac disease but it can be elevated for other reasons as well. The centerpiece of celiac blood antibody testing is the TTG-IGA and apparently that was not elevated. When you had the blood draw done for the testing, had you already been cutting back on gluten?1 point -
I've recently researched a lot about salt lately. Celtics sea salts have minerals, which have been tested to include aluminum, cadmium, iron, lead, and microplastics. I used to use Redmond salt, but it tests as having aluminum, iron, and lead. I finally settled on 2 clean salts: Vera Salt, which you can only order from their web site. Also Ava Jane's which...1 point
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SkinSafe
Scott Adams reacted to Wheatwacked for a topic
I use Listerine. Rinse first to soften the tarter, then brush with Oral B electric toothbrush super sonic. The $15 ones at the supermarket. At 73 I still have all my teeth. While a blood test can measure iodine levels, it's not the most accurate method for assessing iodine status, and urinary iodine excretion is considered a better indicator. Have...1 point -
SkinSafe
Itsabit reacted to knitty kitty for a topic
@Itsabit, Ask your doctor for an erythrocyte transkelatose test to measure thiamine. It's a better measure of thiamine deficiency than a serum test.1 point -
SkinSafe
Itsabit reacted to knitty kitty for a topic
Hello, @Itsabit, Your journey sounds very similar to mine. I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins. Nutritional deficiencies go along with Celiac Disease. Blood tests are not accurate measurements of deficiency states. The body robs stored vitamins from organs to circulate...1 point -
SkinSafe
Itsabit reacted to Jacki Espo for a topic
I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash. G...1 point -
The Ultimate Guide to Dining Out Gluten-Free: Tips and Restaurant Picks (+Video)
Scott Adams reacted to Quiet Spirit for an article
Where we live, a pizza place, Marcos, has cauliflower crust pizzas. They only have 10 inch crusts. For my husband and me, that is large enough.1 point -
Barilla Gluten Free Pasta makes me sick
Scott Adams reacted to Hurtfeelingz for a topic
I know this is an older thread but found it when I was doing some of my own research and thought I would share this with others… Glyphosate the pesticide used on many crops across North America causes Celiac type reactions… I was forced to switch to organic food because of it, I hope this helps others in their journey of feeling well!1 point -
Scott Adams' Story of His Diagnosis of Celiac Disease
Ali2025 reacted to Scott Adams for an article
Celiac disease can be tricky to diagnose, especially if you've already started eliminating gluten from your diet, as this can lead to false negative blood test results. The gold standard for diagnosing celiac is typically a combination of blood tests and an endoscopy with biopsy, but if your gastroenterologist isn't recommending further testing, it might...1 point -
Current "gluten challenge" recommendations are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) daily leading up to the day of the biopsy.1 point
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Cristiana, it also needs to be said since test scales are not standardized in the laboratory world, comparing numbers from different test periods can be misleading unless the same labs were used each time.1 point
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Hi @CarolTN I haven't been diagnosed with seborrheic dermatitis but as @Scott Adams says, like a lot of coeliacs I do suffer from itchy skin, and now adult onset eczema. The latter started during one of the lockdowns. I find my skin is often itchy if the temperature changes from hot to cold or cold to hot, that seems to set it off. This time of year is bad, I also get an itchy throat, so maybe pollen is having some effect. I am not sure where you live but here I'm mentioning the products I buy in the UK that help me - they may be available where you live? For my scalp, I have used with some success Neutrogena T-Gel, but I think Philp Kingsley's products for flakey, itchy scalps are amazing. I've used the shampoo and the toner. For the rest of my skin, I use something called Adex Gel after I have showered, and then any really itchy patches I treat with Betnovate, a steroid cream, 20 minutes later, as suggested by a doctor. I currently have some very stubborn patches around my waist, no idea what they are - Canesten anti-fungal cream makes them worse, so does Betnovate. But when I rub the patches, they disappear, i.e. blanch, which apparently classic for dermatitis. It's a constant challenge! When I first got eczema I had given up chocolate and was eating cakes which contained almonds. My blood tests showed the markers for eczema were elevated at that time - the IgE. I felt there might be a connection. So you may find something in your diet isn't helping the situation, other than gluten? Cristiana
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By Theresa2407 · Posted
Yes it is. So I try to buy block only, but still watch for it. -
By Scott Adams · Posted
I believe it is also commonly used in pre-grated parmesan cheeses, like Kraft's. -
By Theresa2407 · Posted
Yes mostly found on RX pill capsules and store bought shredded cheese are the worst for me.
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