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Showing content with the highest reputation since 11/17/2025 in Posts
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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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Welcome to celiac.com, @jenniber! This disaccharide deficiency is a new one for me but after researching it, it is a thing. I am concerned that your GI doc skipped the normal protocol of first ordering blood tests for celiac disease and went straight to the scoping/biopsy. Since she, herself, initially believed you to have celiac disease and the...2 points
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I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...2 points
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Shingles - Could It Be Related to Gluten/ Celiac
knitty kitty and one other reacted to Russ H for a topic
I hope you are on the mend soon. About 1 in 5 people who contracted chicken pox as a child go on to develop shingles in later life - it is not uncommon. There are 5 known members of the herpes virus family including chicken pox that commonly infect humans, and they all cause lifelong infections. The exact cause of viral reactivation as in the case of shingles...2 points -
Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It
Scott Adams and one other reacted to Russ H for a topic
BFree bread is fortified with vitamins and minerals as is ASDA own-brand gluten-free bread. All the M&S bread seems to be fortified also.2 points -
My only proof
knitty kitty and one other reacted to Mari for a topic
OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...2 points -
Challenges eating gluten before biopsy
Scott Adams and one other reacted to Ginger38 for a topic
I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...2 points -
Shingles - Could It Be Related to Gluten/ Celiac
knitty kitty and one other reacted to Flash1970 for a topic
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...2 points -
Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It
Russ H and one other reacted to Scott Adams for a topic
In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...2 points -
Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...2 points
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Related issues
Scott Adams and one other reacted to Wheatwacked for a topic
Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...2 points -
Feel like I’m starting over
cristiana and one other reacted to Wheatwacked for a topic
Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...2 points -
jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...2 points
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Related issues
Scott Adams and one other reacted to Mari for a topic
Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate...2 points -
Rectal pain
cristiana and one other reacted to Celiac and Salty for a topic
I have dealt with proctalgia fugax on and off for a year now. It feels almost paralyzing during an episode and they have started lasting longer and longer, sometimes 20+ minutes. I was recently diagnosed with celiac disease and wonder if the 2 are related. I did request a prescription for topical nitroglycerin for my PF episodes and that has helped tremendously...2 points -
It sounds like you have a very reasonable GI doctor, who diagnosed you based on family history and symptoms after eating gluten. I would consider you lucky! The other option would be to make yourself very sick by doing weeks of a gluten challenge prior to an endoscopy.2 points
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Issues before diagnosis
knitty kitty 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...1 point -
Disaccharide deficient, confusing biopsy results, no blood test
jenniber reacted to Scott Adams for a topic
Let us know how things turn out--good luck!1 point -
Disaccharide deficient, confusing biopsy results, no blood test
Scott Adams reacted to jenniber for a topic
thank you Scott! This is very helpful. I have a message out to my doctor and i think this guide will help me interpret the results! its very thorough.1 point -
Disaccharide deficient, confusing biopsy results, no blood test
jenniber reacted to Scott Adams for a topic
I agree with @trents, and encourage you to follow up with your doctor about getting a celiac disease blood test done. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test...1 point -
Stomach hurts with movement
Scott Adams reacted to DebJ14 for a topic
I am glad you are getting this checked out. Our son would get that kind of pain when he walked. He assumed it was gut. Boy, was he ever wrong. It was his heart. After a cath and triple bypass and a long recovery, he can walk 45 minutes on the treadmill with no pain.1 point -
What foods can trigger a response in people with gluten sensitivity?
Scott Adams reacted to trents for a topic
Welcome to the forum, @yellowstone! The most common ones seem to be dairy (casein), oats, eggs, soy and corn. "Formed" meat products (because of the "meat glue" used to hold their shape) is a problem for some. But it can be almost anything on an individual basis as your sensitivity to rice proves, since rice is uncommonly a "cross reactor" for celiacs. Some...1 point -
Shingles - Could It Be Related to Gluten/ Celiac
knitty kitty reacted to Jmartes71 for a topic
Shingles is dormant and related to chicken pox when one has had in the past.Shingles comes out when stress is heightened.I had my 3rd Shingles in 2023.1 point -
Shingles - Could It Be Related to Gluten/ Celiac
Jmartes71 reacted to knitty kitty for a topic
Hi, @Ginger38, I've had shingles in the past. I understand how miserable you're feeling. Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten. The virus lives dormant in the nerves on the left side of my face. It causes...1 point -
Supplements for those Diagnosed with Celiac Disease
Scott Adams reacted to knitty kitty for a topic
@Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...1 point -
Shingles - Could It Be Related to Gluten/ Celiac
Scott Adams reacted to Jmartes71 for a topic
Yarrow Pom works really well with the skin issues I found out.I had to stop so my doterra because dealing with medical celiac circus. I had shingles in Feb 2023. Prayers for healing1 point -
Shingles - Could It Be Related to Gluten/ Celiac
Scott Adams reacted to Ginger38 for a topic
Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress ...1 point -
Challenges eating gluten before biopsy
Xravith reacted to Scott Adams for a topic
For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover...1 point -
Shingles - Could It Be Related to Gluten/ Celiac
Scott Adams reacted to Ginger38 for a topic
It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away1 point -
Challenges eating gluten before biopsy
Xravith reacted to Scott Adams for a topic
It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...1 point -
Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It
Scott Adams reacted to cristiana for a topic
It's strange because I'm pretty sure not too long ago I picked up a loaf of bread with B vitamins, but I can't find a single one now. Probably cutbacks, everyone's trying to save money now!1 point -
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Inconclusive results
Scott Adams reacted to deanna1ynne for a topic
Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...1 point -
Coeliac UK Research Conference 2025
Russ H reacted to Scott Adams for a topic
Thanks for sharing this!1 point -
Gluten free nuts
Scott Adams reacted to Clear2me for a topic
Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed in different plants. Some plants can be labeled gluten free because the plant does not also package gluten...1 point -
Gluten free nuts
Scott Adams reacted to Aretaeus Cappadocia for a topic
I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to...1 point -
My only proof
knitty kitty reacted to NanceK for a topic
Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get cal...1 point -
My only proof
Scott Adams reacted to NanceK for a topic
Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...1 point -
Gluten free nuts
Scott Adams reacted to Clear2me for a topic
Thank you for all the excellent information. I moved from Wyoming to California. May be its where I am located but So far none of the Costco Kirkland brand I have looked at is labeled gluten free. Same with the Sam's Members Mark. The Kirkland nuts you mention all say they are processed in a plant that processes wheat. I am going to keep checking. Thank...1 point -
Gluten free nuts
Scott Adams reacted to Aretaeus Cappadocia for a topic
Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website...1 point -
Going for upper endoscopy today
Scott Adams reacted to Midwesteaglesfan for a topic
Back home after the scope. Dr said as soon as he got in there it was clear signs of celiacs. Must be a decent amount of damage. I don’t remember the post procedure conversation as the anesthesia was still wearing off but that’s what my wife says anyway. Still the biopsy results to come back but pretty definitive and now I get to learn to live gluten fre...1 point -
Bee balm lipbalm not gluten free
Scott Adams reacted to marlene333 for a topic
To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.1 point -
Patiently Waiting to See Results
DebJ14 reacted to Scott Adams for a topic
It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.1 point -
Patiently Waiting to See Results
Scott Adams reacted to catsrlife for a topic
My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...1 point -
Related issues
Scott Adams reacted to Jmartes71 for a topic
I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...1 point -
Airborne Gluten?
knitty kitty reacted to annamarie6655 for a topic
Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum. Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains...1 point -
I was suffering from PF just previous to being dx with celiac disease about 25 yr. ago but have not been troubled with it since. Not sure what the connection between the two is of if there is one. But I do know it is a very painful condition that takes your breath away when it strikes.1 point
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Heat intolerant... Yikes
Colleen H reacted to captaincrab55 for a topic
Hi Colleen H, I suffered with the pins and needles/burning feeling in my legs and feet for at least 6 years until my Nephrologist figured out that I had to go on a low salt diet. He said my kidneys weren't strong enough to remove the salt. The simple fix was a diuretic, but that med leaves the uric acid behind, so that wasn't an option. On the bright...1 point -
still struggling with cravings
wellthatsfun reacted to Scott Adams for a topic
I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...1 point
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By knitty kitty · Posted
@xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables. Not only are these high in fiber, they also are good sources of magnesium. Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation. Thiamine Vitamin B1 and magnesium work together. Thiamine in the form Benfotiamine has been shown to improve intestinal health. Thiamine and magnesium are important to gastrointestinal health and function. -
Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
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By knitty kitty · Posted
@EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet. Vitamin C and the eight B vitamins are needed to help the body clear histamine. Have you been checked for nutritional deficiencies? -
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 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored?
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Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
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