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Popular Content

Showing content with the highest reputation since 11/17/2025 in Posts

  1. Rogol72
    @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
  2. trents
    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
  3. Mari

    My only proof

    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
  4. Russ H
    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
  5. Russ H
    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
  6. Mari

    My only proof

    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
  7. Ginger38
    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
  8. Flash1970
    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
  9. Scott Adams
    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
  10. Mari

    My only proof

    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
  11. Wheatwacked

    Related issues

    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
  12. Wheatwacked
    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
  13. Mari

    Related issues

    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
  14. Mari

    Related issues

    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
  15. Celiac and Salty

    Rectal pain

    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
  16. RMJ
    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
  17. sha1091a
    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
  18. Scott Adams
    Let us know how things turn out--good luck!
    1 point
  19. jenniber
    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
  20. Scott Adams
    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
  21. DebJ14
    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
  22. trents
    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
  23. Jmartes71
    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
  24. knitty kitty
    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
  25. knitty kitty
    @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
  26. Jmartes71
    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 healing
    1 point
  27. Ginger38
    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
  28. Scott Adams
    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
  29. Ginger38
    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 away
    1 point
  30. Scott Adams
    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
  31. cristiana
    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
  32. JoJo0611

    CT with contrast.

    Thank you.
    1 point
  33. deanna1ynne
    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
  34. Scott Adams
    Thanks for sharing this!
    1 point
  35. Clear2me

    Gluten free nuts

    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
  36. Aretaeus Cappadocia
    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
  37. NanceK

    My only proof

    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
  38. NanceK

    My only proof

    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
  39. Clear2me

    Gluten free nuts

    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
  40. Aretaeus Cappadocia
    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
  41. Midwesteaglesfan
    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
  42. marlene333
    To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    1 point
  43. Scott Adams
    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
  44. catsrlife
    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
  45. Jmartes71

    Related issues

    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
  46. annamarie6655
    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
  47. trents

    Rectal pain

    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
  48. captaincrab55
    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
  49. Scott Adams
    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
  50. Scott Adams
    I suspect this hidden damage is why my neurological issues didn't improve for decades, until I started more rigorous dietary supplementation.
    1 point
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    • knitty kitty
      @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.  
    • trents
      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!
    • knitty kitty
      @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?
    • sha1091a
      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? 
    • trents
      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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