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Showing content with the highest reputation since 02/01/2025 in Posts
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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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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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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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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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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 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’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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Issues before diagnosis
Wheatwacked and one other reacted to sha1091a for a topic
I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia. going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 9...2 points -
Supplements for those Diagnosed with Celiac Disease
Zuma888 and one other 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...2 points -
I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g...2 points
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New here
captaincrab55 and one other reacted to Mari for a topic
Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...2 points -
Tea Bags and Gluten
knitty kitty and one other reacted to Beverage for a topic
I order tea from https://www.republicoftea.com/ All gluten free. Sign up for the newsletter and they send discounts regularly.2 points -
Taking Probiotics but Still Getting Sick After Gluten – Advice?
Scott Adams and one other reacted to trents for a topic
As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable...2 points -
Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌 Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months...2 points
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Coeliac and Thyroid?
Russ H and one other reacted to Scott Adams for a topic
The connection between celiac disease and thyroid disorders, particularly Hashimoto's thyroiditis and hypothyroidism, is well-established and statistically significant. Research indicates that individuals with celiac disease have a much higher prevalence of thyroid disease compared to the general population, with studies suggesting between 4-11% of celiacs...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 -
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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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 -
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 -
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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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 -
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 -
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 -
Is it common to develop a wheat allergy in addition to Celiac Disease?
Pablohoyasaxa and one other reacted to Stephanie Wakeman for a topic
Thank you so much for your response! It's been a challenging journey with this condition!2 points -
Inflammation and Menier’s disease link?
Beverage and one other 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...2 points -
Confused about my results
knitty kitty and one other reacted to Russ H for a topic
Sorry but I have to dash for an appointment so little time just now. Your signs and symptoms and response to a gluten-free diet sound like seronegative coeliac disease. Seronegative coeliac disease, Coeliac UK.2 points -
I am wondering if my symptoms are Celiac Disease related..
knitty kitty and one other reacted to NightRaven92 for a topic
Thank you both so much,for the helpful advice on this topic & I am happy that it's not in my head,on my body telling me that something is up with my symptoms & needs a doctor's input on. I have a strong feeling in my gut,that my symptoms are either related to a gluten sensitivity,or even Celiac Disease itself. I am keeping a detailed track of my symptoms...2 points -
Increasing symptoms after going gluten free
Scott Adams and one other reacted to ognam for a topic
I had a lot of weird/random symptoms for a few months after going gluten free. But eventually they evened out and I felt SO MUCH BETTER. The person above wrote a very detailed message that looks helpful. I'd add don't forget to check for gluten in places like medicine. Advil liquigels, for example, have gluten. It's very frustrating trying to figure...2 points
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Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot breakfast cereal alternatives.
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By SilkieFairy · Posted
After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school. This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4. Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac. I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am! -
learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
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I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak. I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now. Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better. I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home) and maybe having a medical reason to see a dietician? please let me know if it's reasonable to just go back to the way I was eating. Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.
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