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Showing content with the highest reputation since 07/01/2025 in all areas
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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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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 -
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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Lymphocytic Colitis with Celiac
ShellsKeathley and one other reacted to Katerific for a topic
I was diagnosed with microscopic colitis and celiac a couple of years ago. The GI doctor prescribed a course of budesonide, which moderately helped until I tapered off. After a lot of ups and downs over the course of 2 years, I am finally in microscopic colitis remission. Since I am also diabetic, I was started on metformin and Jardiance. Metformin...2 points -
@Scott Adams Xiromed is one of the generic manufacturers of Progesterone pills.2 points
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Confused About Results
Ginger38 and one other reacted to knitty kitty for a topic
@Ginger38, Diabetes and Celiac often go hand in hand. Having more than one autoimmune disease is common with Celiac. I'd err on the side of caution and go gluten free. I did not want to go on insulin, either. I got my diabetes under control by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne). My diet...2 points -
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 -
Am I celiac or not?
knitty kitty and one other reacted to somethinglikeolivia for a topic
Fascinating! This was very helpful, thanks for sharing2 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 -
Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes...2 points
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Am I celiac or not?
knitty kitty and one other reacted to Wheatwacked for a topic
Just like you cannot be a little pregnant, you cannot be a little Celiac. Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,00...2 points -
This Roller Coaster Ride Needs to Stop
Zuma888 and one other reacted to Scott Adams for a topic
Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG...2 points -
How Refining the Gluten Challenge May Help Improve Diagnostics for Celiac Disease
knitty kitty and one other reacted to Ginger38 for an article
I have extreme sleepiness when I am eating gluten, especially regularly , like for the gluten challenge2 points -
Am I celiac or not?
Scott Adams and one other reacted to trents for a topic
@N00dnutt, as OP explained earlier, she had a gastroscopy done earlier while she had been eating plenty of gluten for months. It was negative despite strong positive antibody scores.2 points -
Emerging Celiac Disease Treatments: Will Any Allow Gluten Consumption Again? (+Video)
Oldturdle and one other reacted to Scott Adams for an article
Celiac.com 07/07/2025 - For the 1% of the global population with celiac disease, even trace amounts of gluten can trigger debilitating symptoms and long-term intestinal damage. While a strict gluten-free diet remains the only treatment...2 points -
Am I celiac or not?
somethinglikeolivia and one other reacted to trents for a topic
Occasionally we do see anomalies where celiac antibody tests are positive but biopsies are negative, and even visa versa. Sometimes, damage to the small bowel lining is patchy and unless numerous samples are taken from various areas, the damage can be missed. So, there's that issue as well. I think in your situation, the tell-tale indicator is the difference...2 points -
All I can say is this site is great!2 points
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Chest pain from celiac
knitty kitty and one other 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...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 -
Chest pain from celiac
Zuma888 and one other reacted to Betsy Crum for a topic
Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.2 points -
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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Chest pain from celiac
ShariW and one other reacted to Scott Adams for a topic
It sounds like you've done an amazing job managing your health since going gluten-free in 2007, and it must be incredibly frustrating to experience these unexplained chest pains now. Since you were never formally tested for celiac disease, we can't rule out whether you have celiac or non-celiac gluten sensitivity (NCGS), but your clear symptom improvement...2 points -
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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New to gluten free living, in5ro and small question
knitty kitty and one other reacted to trents for a topic
First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac...2 points -
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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Celiac.com 06/24/2025 - For people with celiac disease or non-celiac gluten sensitivity, the consequences of eating gluten go far beyond digestive discomfort. One of the most confusing and frustrating experiences for many is the cognitive...2 points -
Can Celiac flares affect my eyes?
knitty kitty and one other reacted to jeriM for a topic
Thank you Knitty Kitty, I have all the information for the nutritionist sitting in front of me, but I've procrastinated. Between you and Scott - I'll contact him tomorrow and get started on a better me. Thank you both for all the support and information.2 points -
Thank you! This is the first article I’ve read about the non-physical effects of being glutened. It validates everything I have experienced, but never had any scientific proof of. I would like to see more studies on the inability to concentrate, depression, and memory issues.2 points
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Thank you for your response. You are right, this is not worth the damage to my thyroid since I know gluten is bad for me anyway. I stopped the challenge and did the IgA and tTG-IGA tests and am waiting for results, although I know it is likely they will be false negative anyway. I figured since I wasn't ever really strict about cross contamination, they...2 points
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Gluten challenge and Hashimoto's Thyroiditis
Beverage and one other reacted to Scott Adams for a topic
I’m so sorry you’re going through this—it sounds like your body is sending a clear signal that gluten is a major trigger for your Hashimoto’s. The dramatic spike in your anti-TPO (from 50 to 799!) and the severe symptoms you’re experiencing suggest a strong immune reaction, even if celiac testing wasn’t done earlier. While a formal diagnosis would clarify cro...2 points -
almost a year in recovery - so many questions about to give up
Zuma888 reacted to knitty kitty for a topic
Welcome to the forum, @kopiq, Have you been checked for nutritional deficiencies? Nutritional deficiencies may account for many of your symptoms. Celiac damages the intestines which lowers our ability to absorb essential vitamins and minerals. Have you been referred to a dietician to discuss a nutritionally dense gluten free diet? You are eating...1 point -
Newly Diagnosed
Scott Adams reacted to DebJ14 for a topic
I was tested for nutrient deficiencies and Thiamine was not my problem. The doctor uses the Spectracell Test for Micronutrient Deficiencies. I was deficient in Carnitine, Magnesium, multiple antioxidants, D, Selenium, B12, B6 and a long list, just not Thiamine.1 point -
Umm...meh. Under the "Tips for a Safe...", #6 should be #1. If a cruiseline bombs out on the research, 2-6 become irrelevant. That notwithstanding, how is Princess any different from any other cruise line if you have to follow stated tips 1-5 if they manage to pass #6? You'd do the same everywhere else. I should say, I would. For the ...1 point
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Frustrated
Beverage reacted to knitty kitty for a topic
Welcome to the forum, @Jmartes71, Wow! 31 years! That's great! You can get a DNA test to show genes specifically for Celiac. Your genes don't change whether you eat gluten or not. Have you been checked for nutritional deficiencies? The gluten free diet can be low in essential nutrients. You may have become a bit deficient after such...1 point -
Celiac.com 07/17/2025 - People living with autoimmune conditions often face higher risks for developing other autoimmune diseases. One such concern is type 1 diabetes, a serious and lifelong condition where the immune system destroys insulin...1 point -
Ocd making gluten fears unmanageable. Need advice
Scott Adams reacted to Wends for a topic
Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as l...1 point -
Probably celiac but also confused
knitty kitty reacted to N00dnutt for a topic
@Knitty_Kitty Noted with appreciation.1 point -
Canker sores
cristiana reacted to Scott Adams for a topic
Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—w...1 point -
How to interpret my genetic test results
Zuma888 reacted to Scott Adams for a topic
Your interpretation is on the right track! Based on your results, you do have one of the genetic markers associated with celiac risk—HLA-DQ8—which means you inherited DQA1*03 from one parent and DQB1*0302 from the other. These two alleles together form the HLA-DQ8 haplotype, so having both confirms the DQ8 positivity (not just one alone). Since you’re ...1 point -
Well then, I'd say he's making excellent progress. It can take some time for antibody numbers to normalize. Even though new antibodies are no longer being produced, it takes a while for the old ones to be disposed of. Make sure you keep an eye on the alkaline phosphatase levels. It is probably true that is tied to his adolescent growth spurt but it's...1 point
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Is it common to develop a wheat allergy in addition to Celiac Disease?
knitty kitty reacted to Pablohoyasaxa for a topic
Your post is excellent. Thank you!! I have been trying to keep my diet "truly gluten free," but as you know, it's a sneaky allergy, especially if you have a heightened sensitivity. So ironically, and sadly, no medical person told me to stay away from "gluten free oats.". To my own fault, my lack of awareness led to years of eating massive bowls of gluten...1 point -
Inflammation and Menier’s disease link?
Beverage reacted to knitty kitty for a topic
@MagsM and @leenora, Thiamine improves Alzheimer's. Thiamine has anticancer effects in high doses. Thiamine helps improve Hashimoto's. I'm linking information you may find helpful. Evaluation of neuroprotective role of benfotiamine in Alzheimer's disease model: A randomized control study https://pubmed.ncbi.nlm.nih.gov/40176579/ Supplemental...1 point -
Just to follow up on this, a year later I had endoscopy, the result was mild chronic gastritis, the initial endoscopy looked normal and the biopsy was normal.1 point
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How Refining the Gluten Challenge May Help Improve Diagnostics for Celiac Disease
Zuma888 reacted to knitty kitty for an article
According to this recent research, updates to the gluten challenge are being implemented. Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured...1 point
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I also had high eosinophils which I’ve never had before either - could that be due to gluten consumption?
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By knitty kitty · Posted
You're welcome! Be sure the patient eats at least ten grams of gluten per day for a minimum of two weeks prior to repeating antibody testing. Some people unconsciously reduce the amount of gluten in their diet because the feel unwell. Three grams of gluten per day is sufficient to produce symptoms. Only at ten grams or more is the immune system provoked to raise the antibody production high enough so that the antibodies leave the digestive tract and enter the blood stream where they can be measured. Read the comments below the article... -
By Wamedh Taj-Aldeen · Posted
Thanks for your response and thoughts. Total IgA is normal. HLA DQ2/DQ8 came as heterozygous and the interpretation of the lab that the risk of coeliac disease is mild to moderate. Thyroid function test is normal. I agree that the best way is to repeat tTG antibodies in 6 months time as the result was not massively high. -
By knitty kitty · Posted
Welcome to the forum, @Wamedh Taj-Aldeen, How is the patient's thyroid? You could check for thiamine deficiency which can cause the thyroid to either become hyper or hypo. TTg IgA can be high in both hyperthyroidism and hypothyroidism. tTg IgA can also be high if patient is taking medications to stimulate the thyroid as in hypothyroidism. Thanks for visiting! Keep us posted! -
By knitty kitty · Posted
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 progress!
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