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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 -
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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How to work through food paranoia
Scott Adams and one other reacted to MegRCxx for a topic
Update: Biopsy results in, i have coeliac disease and awaiting advice with the dietitian. Thank you everyone for your help.2 points -
Having the will to be healthy but not the willpower
Scott Adams and one other reacted to trents for a topic
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...2 points -
I wanted to say hello, and add that early in eating gluten free I had to avoid processed foods due to too many ingredients. I also had additional intolerances that needed time to subside. My team suggested I limit gluten free processed foods, as I was having issues with items with too many ingredients. I see Trents explained some of the culprits when he...2 points
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Diagnosed gluten allergy but not Celiac
Pamela Kay and one other 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...2 points -
Struggling to get into a good pattern
Zuma888 and one other 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...2 points -
Struggling to get into a good pattern
knitty kitty and one other reacted to Beverage for a topic
Are you exposed to any airborne sources of gluten? We have an older house and constantly fixing something. Cutting into old wall board or plaster can release gluten into the air. Also, the sickest i ever got was from taking care of my neighbor's chickens, they get excited and kick up everything, air filled with dust. Sure enough, their food contained...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 -
Struggling to get into a good pattern
knitty kitty and one other reacted to Zuma888 for a topic
I really recommend you go on AIP to heal your gut first, and then reintroduce foods one by one...2 points -
Diagnosed gluten allergy but not Celiac
knitty kitty and one other reacted to Awol cast iron stomach for a topic
"...hemorrhoids, constipation and diarrhea" . Heard of indeed. Experienced too. In hindsight, I can remember from age 2 having, and trying to convey my issues. I went 38 years misdiagnosed. So yes one can have these issues. I did have to go back on gluten for a gluten challenge. I failed that challenge and 6 days in they give me permission to stop, and I...2 points -
Read and understood with sympathy. Food for thought, excuse the pun. For future reference, is there an officemate you can count on to alert you when the group makes sudden changes in plans like that? Someone who is truly looking out for you?2 points
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@alltheceliacquestions, 20ppm, even 10ppm will still cause reactions in the more sensitive subset of celiacs.2 points
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The Gluten-Free Detective: How to Track Down Hidden Contamination in Your Own Kitchen
Bakerygirk and one other reacted to Scott Adams for an article
Celiac.com 07/26/2025 - Going gluten-free isn’t just a matter of swapping out bread and pasta—it’s a full-on lifestyle adjustment. For those with celiac disease or gluten sensitivity, even trace amounts of gluten can trigger serious sympt...2 points -
This Roller Coaster Ride Needs to Stop
Scott Adams and one other reacted to Beverage for a topic
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...2 points -
Burning sensation when I wake up
Zuma888 and one other reacted to knitty kitty for a topic
Please be sure to try Benfotiamine or Thiamine Hydrochloride. The form Thiamine Mononitrate is not absorbed nor utilized well. Benfotiamine is much more bioavailable. Perhaps Thiamine Mononitrate was in your previous B Complex supplements, explaining why they didn't work for you. All the B vitamins work together. Thiamine needs the other B vitamins...2 points -
Burning sensation when I wake up
Healthforme and one other reacted to Scott Adams for a topic
The burning sensation you describe—particularly upon waking or after exercise—could indeed be related to systemic inflammation, which is common in autoimmune conditions like Hashimoto's and celiac disease. Gluten exposure, even in small amounts, may trigger an immune response that exacerbates inflammation, leading to the achiness and burning you feel, es...2 points -
Struggling to get into a good pattern
Zuma888 and one other reacted to knitty kitty for a topic
@Rejoicephd, Would you consider adding a B Complex to your supplements? I was taking a multivitamin and still became deficient. There's a question as to how well multivitamins dissolve in the digestive system. I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery...2 points -
New Blood-based T Cell Celiac Disease Diagnostic Test Eliminates Prolonged Gluten Challenge (+Video)
Zuma888 and one other reacted to Scott Adams for an article
Celiac.com 07/21/2025 - For many people living with celiac disease or gluten sensitivity, getting an accurate diagnosis can be an uphill battle. The traditional process often involves returning to a gluten-filled diet for several weeks...2 points -
Cubans Using Creative Local Ingredients to Craft Gluten-Free Flours
sc'Que? and one other reacted to Sarah Porter for an article
More like this. Self-sourced sustainability is a key component of supporting indigenous peoples in other countries.2 points -
Struggling to get into a good pattern
Zuma888 and one other reacted to knitty kitty for a topic
Welcome to the forum, @Rejoicephd, I found the Autoimmune Protocol diet (Dr. Sarah Ballantyne) extremely helpful in getting my health back. The AIP diet is very strict, removing any possibly irritating foods and allowing time for the digestive tract to heal, then other foods are added back in with less risk of reaction. Keep us posted on your...2 points -
My sister has celiacs, I have gluten sensitivity along with my daughter. I suffered from depression, anxiety, and panic attacks until 62 years old. All that stopped when I went gluten free. Yes I know how much gluten can affect gut health and in turn brain health and I don't have celiac.2 points
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The Impact of Anxiety and Depression on Celiac Disease Management
knitty kitty and one other reacted to KennaH for an article
Interesting article. I am diagnosed celiac with anxiety and migraines. Also diagnosed with IBS-mixed prior to celiac confirmation. Moderate to severe villi blunting. I have no problem with gluten-free diet but FODMAP is overwhelming. Only self research, especially on this site, has helped more than any gastroenterologist. I believe I do report severe symptoms...2 points -
This is truly a breakthrough in the diagnostic realm! Hopefully, this technology will become widely available sooner than later and save a lot of people a lot of misery in the process of trying to get a diagnosis.2 points
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Lymphocytic Colitis with Celiac
knitty kitty and one other reacted to Oldturdle for a topic
Thanks, Knitty Kitty! You seem so knowledgeable. I have followed your other posts. Actually, I have been supplementing with all of the B complex vitamins, as well as other recommended vitamins and minerals for over 50 years. My urine is bright yellow after dosing, so I am pretty sure that I am absorbing enough of these supplements to be therapeutic. ...2 points -
Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and...2 points
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Newly Diagnosed
miguel54b and one other reacted to knitty kitty for a topic
Hello, @NCalvo822, Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure. These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract. Joints can ache, thyroid problems or the pancreas can develop. Ataxia is just one of over two hundred...2 points -
Still unsure.....
Beverage and one other reacted to knitty kitty for a topic
Thiamine interacts with all the other B vitamins. Thiamine and B 6 make a very important enzyme together. With more thiamine and other vitamins available from the supplements your body is absorbing the ones you need more of. The body can control which vitamins to absorb or not. You're absorbing more and it's being transported through the blood. ...2 points -
Welcome to the forum, @NCalvo822! Ditto to what Scott said. But let me ask you, what method or methods did your physician use to diagnose you as having celiac disease? Normally, it is a two step process. The first step involves a blood test that looks for certain antibodies produced by celiac disease. The second step involves an upper GI scoping and biopsy...2 points
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This Roller Coaster Ride Needs to Stop
Beverage and one other reacted to knitty kitty for a topic
@Ginger38, I've been there with horrible symptoms and diarrhea accidents and diabetes and the insulin conundrum! My doctors were just as frustrating! I had nutritional deficiencies. I know your doctors refuse to test for this. So did mine, saying "I can't make money prescribing vitamins." Some members say a naturopathic doctor is more open...2 points -
This Roller Coaster Ride Needs to Stop
Beverage and one other reacted to Scott Adams for a topic
Given your severe symptoms it sounds like you would be much better off going 100% gluten-free!2 points -
Celiac Disease Treatment and Continuing Symptoms
Rejoicephd and one other reacted to Mary Anderies for an article
Celiac.com 04/07/2021 - It is not uncommon for people with celiac disease to have ongoing digestive symptoms and other systemic problems, even on a gluten free diet. Even though celiac disease is becoming better understood each year, much...2 points -
Having the will to be healthy but not the willpower
Scott Adams reacted to Wheatwacked for a topic
This is not a weakness. It is a serious threat to your health. I once read an interview with a representitive of a large company. He proudly stated that his wheat based product is more addictive than potato chips. The other issue is cultural. Perhaps this book will help Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together. It is published here...1 point -
Blood results
knitty kitty reacted to Russ H for a topic
Do you know what the lab's standard range is for the IgA tTG2 result? The Endomysial IgA basically tests for the same antibodies as IgA tTG2 but it uses an older, less sensitive method and the result is positive/negative rather than quantitative. Hence, it is possible to show raised IgA tTG2 antibodies without getting a positive test for Endomysial IgA antibodies...1 point -
gluten-free stool softener needed for after surgery
Scott Adams reacted to Jenny (AZ via TX) for a topic
Thanks!1 point -
Burning sensation when I wake up
Zuma888 reacted to knitty kitty for a topic
@Healthforme, No prescription needed for thiamine hydrochloride, Benfotiamine, and TTFD (Tetrahydrofurfuryl Disulfide). They are available over the counter. Thiamine Mononitrate is not recommended because the body doesn't absorb or utilize it well.1 point -
Burning sensation when I wake up
knitty kitty reacted to Zuma888 for a topic
I am taking thiamine hydrochloride. It's been over a week, and the burning seems to be gone. I am also taking a lower dose B complex with iron. Thank you so much for your help!1 point -
Question about biopsy
somethinglikeolivia reacted to Scott Adams for a topic
Your experience highlights a common frustration in celiac disease diagnosis—discrepancies between lab results, biopsy findings, and clinical symptoms. The "localized mild nodular mucosa" noted in your duodenal bulb could indeed be significant, even if the overall pathology was deemed negative. Nodularity in the duodenum is often associated with lymphocytic i...1 point -
Struggling to get into a good pattern
knitty kitty reacted to Rejoicephd for a topic
Thanks so much. 🙏 I see they have them on Amazon. I'm all over it. I'll let you know how it goes.1 point -
Trader Joe's strikes again
Scott Adams reacted to StuartJ for a topic
Just ate some for lunch! A really superb alternative to gluten-free bread and burger buns that all have the taste and consistency of compacted sawdust. I bought two packs and now I'm down to one remaining muffin so need to get some more; the only thing is it's their own brand - they don't do mail or on line ordering and the nearest TJ's is in Charlottesville...1 point -
Celiac Disease Triggers Cognitive Deficit and White Matter Changes in the Brain (+Video)
Zuma888 reacted to knitty kitty for an article
Thiamine can help protect the brain from damage. White spots in the brain can be caused by Thiamine deficiency. Correcting nutrient deficiencies in Celiac Disease and boosting our absorption of vitamins and minerals by taking supplements can help repair and improve our health.1 point -
Willem-Karel Dicke: Pioneer in Gluten-free Diet in the Treatment of Celiac Disease
Zuma888 reacted to Jefferson Adams for an article
Celiac.com 05/15/2010 - Willem-Karel Dicke was born in 1905, in Dordrecht, Holland, and died Utrecht in 1962. Dicke was a Dutch pediatrician, the first clinician to develop the gluten-free diet, and to prove that certain types of flour...1 point -
Finding gluten free ingredients
Scott Adams reacted to dmallbee for a topic
As a life.long celiac, I understand this. I simply ask that the medical profession stop disregarding the fact that it should remain a concern for some. It cost me a lot of medical discomforts.1 point -
Chest pain from celiac
knitty kitty reacted to Wheatwacked for a topic
Vitamin D deficiency can contribute to rib pain. Chest pain stemming from the ribs ccould be costochondritis, which involves inflammation of the cartilage connecting the ribs to the breastbone. This pain can range from mild to severe, potentially mimicking heart attack symptoms, and is often worsened by breathing or movement. Other potential causes include...1 point -
Celiac.com 05/22/2025 - Celiac disease is an autoimmune disorder in which the immune system mistakenly attacks the lining of the small intestine when gluten—a protein found in wheat, barley, and rye—is consumed. This reaction leads to ...1 point
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By Heatherisle · Posted
Thanks for your reply. She has been given a date for her endoscopy, 28th of this month, so hopefully she’ll know for sure if she definitely has coeliac. Needless to say she’s dreading it!!!! -
That is more than 10x the standard range, so a strong positive. In the UK for children and adults under the age of 55, at least 10x the standard range is sufficient to be diagnosed without having an endoscopy. The NICE guidelines are are different for children in that a referral to a gastroenterologist is also recommended for diagnosis. https://www.coeliac.org.uk/healthcare-professionals/diagnosis/how-to-test/ https://www.coeliac.org.uk/healthcare-professionals/diagnosis/diagnosis-in-children/
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By knitty kitty · Posted
Welcome, @annamarie6655, I followed the AIP diet, too. It allows the intestines time to heal. I still avoid a lot of processed foods. Once you get used to eating whole foods, they taste better than processed foods. I couldn't eat pepperoni without becoming ill. Pepperoni is a processed meat that uses "meat glue" to hold its shape. "Meat glue" is microbial transglutaminase produced by microbes in a lab. Transglutaminase produced by microbes works the same in our bodies as tissue transglutaminase, which causes inflammation. Remember those antibody blood tests, tTg IgA and tTg IgG? They test for tissue transglutaminase produced by the body in response to gluten. The microbial transglutaminase provokes the same response in our bodies as if exposed to gluten. Best to avoid processed meat products like formed chicken nuggets, luncheon meats, formed hams, sausage, etc. Best wishes. -
By knitty kitty · Posted
Welcome to the tribe! Do discuss the Autoimmune Protocol Diet (Dr. Sarah Ballantyne) with your dietician. The AIP diet helps while the intestines are healing, lowering potential to develop other food sensitivities. Be sure to discuss supplementing with vitamins and minerals. Damaged intestines don't absorb essential nutrients well. Supplementing while healing boosts absorption and provides vitamins needed for repair. -
Update: Biopsy results in, i have coeliac disease and awaiting advice with the dietitian. Thank you everyone for your help.
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