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Popular Content

Showing content with the highest reputation since 01/12/2010 in Blog Comments

  1. trents
    The headaches could be triggered by something in her diet besides gluten. Over time, celiacs commonly develop allergies/intolerances to other foods besides those containing gluten. This is because of damage to the mucosal lining of the small bowel which allows larger than normal protein fractions to cross into the blood stream. We call this "leaky gut syndrome...
    3 points
  2. Ennis-TX

    After Thanksgiving Update

    Most the pain went away when it popped it back in, after that it was thanks to tramadol.
    3 points
  3. John Scott
    This one page has all the information your friend needs. https://www.helminthictherapywiki.org/wiki/Helminthic_therapy_and_inflammatory_bowel_disease_(IBD) And, if he's on Instagram, he might like to follow this young lady who's recently managed to get into drug-free remission by using helminths, after 13 very challenging years with Crohn's. https...
    2 points
  4. Scott Adams
    FWIW, I have a friend who has Crohn's Disease, and had surgery for it when he was younger, but doesn't want to take some of the prescription medications to help him deal with ongoing symptoms. I told him to look into hookworms treatment.
    2 points
  5. Elaine Browning
    Totally agree I had positive antibodies but no biopsy no need it’s barbaric it’s clear when you know you know
    2 points
  6. LisaSan111
    Thank you for sharing your story so others can benefit from your experiences and expertise. My heart breaks for all you've gone through and I cannot begin to imagine going through all that because of the incompetence of the very people who are supposed to prevent all that.
    2 points
  7. T burd
    Thank you! I do have other autoimmune issues from not being diagnosed until 38. I know celiac does a number on your natural gut flora.
    2 points
  8. ravenwoodglass
    "Treating all nutrient deficiencies and fully healing your gut will not allow those with celiac disease to eat gluten again." Gosh I wish that taking vitamins would 'cure' my celiac. Alas in the 20 years since I was diagnosed that has not been the case. Even the tiny amount that I might encounter in my volunteer work at a food panty ( shelving bread...
    2 points
  9. RebeccaMSL

    Head ache after eating

    I agree. I have a bunch of auto immune diseases, (including Celiac and Type 1 Diabetes and Hashimotos and Reynauds and Sjogrens and NLD...) and recently learned I also have a mast cell activation syndrome with gi presentation. The mast cell episodes are usually triggered by histamines. The histamines in red wine, tomatoes and aged/jarred foods like roasted...
    2 points
  10. Posterboy

    Vitamin Deficiency Testing

    Knitty Kitty, I think you have probably read this before but it is worth sharing for others who might run across this thread for others' still searching for a cause of their co-existing issues not directly related to their Celiac diagnosis like horrible fatigue. See this Hormones Matters article about how Vitamin deficiencies like a Thiamine deficiency...
    2 points
  11. Amanda smith171717

    My Emails

    Hello, I am the Amanda who’s mom made this blog and I know a lot of people who have ready this whole blog saw that I got a make a wish trip to Disney and that may have scared people into thinking maybe I wouldn’t make it. So I guess I’ll just let everyone know. I’m okay and at the time this blog was made I was two and now I’m 17 about to be 18.
    2 points
  12. knitty kitty

    Update April 2020

    Keight, Do be careful of the Paleolithic Ketogenic Diet. Here's a video that explains it better than I ever could. Please watch it. What this doctor says is true. I learned the hard way.
    2 points
  13. ch88
    Posterboy, I have read about possible benefits from taking high dose niacin for some people. However, I am still don't think it is safe. The daily value for niacin according to the Mayo Clinic is 16 milligrams (mg) a day. I can see how taking a really high dosage of slow release Niacin could through off the bodies chemistry even if small dosages are...
    2 points
  14. Ennis-TX

    The beginning

    I do my own blog of venting and things that come into my mind or my life. Most of it just rambling, but feed back is always welcome. I will admit holidays have become.....different, but I also had family deaths on both sides that make no one want to meet up anymore. I still offer to host and cook all gluten free meals, ham, broccoli casserole, deviled eggs...
    2 points
  15. cyclinglady

    Day 9 of gluten-free

    Do you want to feel better faster? Do NOT eat out for the next few months or until all your symptoms have resolved. Eating out and not mastering the gluten free diet (e.g. reading labels) are the main reasons celiacs tend to take a year or longer to heal or bring down their antibodies. Each gluten exposure you have will trigger the immune response triggering...
    2 points
  16. Ennis-TX

    New Issue No Explanation

    Hi, Vickie this post was actually my personal blog post on this site, and some issues I am dealing with after a recent gluten exposure has caused some digestive troubles. You should start a new thread on the main forum. Cancer is a serious issue if you wish to try a natural treatment that is your choice, try rotating your veggies, you might have a sensitivity...
    2 points
  17. dixonpete
    My perspective on this topic will always be informed by my personal experience. I had had four GI related surgeries and was poised to have another big surgery, a colectomy, all because of my Inflammatory Bowel Disease. Hookworms put a stop to all that, including my reactions to gluten. I've had six years experience now doing hookworms, including 3X where...
    1 point
  18. dixonpete
    I don't buy it either. I think a much better explanation is that humans evolved with hookworms just as hookworms evolved with us. The immunoregulatory activities that hookworms conduct to avoid expulsion from the gut have over time been incorporated into how the gut immune system works as a whole, and without hookworms present the gut immune system is incomplete...
    1 point
  19. dixonpete
    Parker didn't exactly go out of his way to sell Helminthic Therapy in this video, did he? In other videos online he's very much positive towards HT, especially Inflammatory Bowel Disease and MS. Acetaminophen is on the list of World Health Organization's Essential Medicines, yet according to Wikipedia it also is responsible for thousands of emergency...
    1 point
  20. dixonpete
    John has compiled a number of HT related books in the Wiki: https://www.helminthictherapywiki.org/wiki/Helminthic_therapy_in_the_media#Books.
    1 point
  21. dixonpete
    It was pointed out on the HT Discord Server that hookworm larvae can live up to 4 months sitting in water after incubation. That would mean that a person inoculating monthly could potentially only need to incubate 4 times a year.
    1 point
  22. dixonpete

    I'm back in remission

    For those curious where the 30 days comes from it's probably simply a reflection of the fact the hookworm larvae need time that to grow up to be mature 1 cm long adults. On receipt in the vial the larvae are microscopic, invisible to the naked eye.
    1 point
  23. dixonpete

    A new journey

    The hookworm posts are coming. Figured without a proper background people wouldn't understand why I was driven to consider hookworms.
    1 point
  24. knitty kitty
    @Evan0529, I'm doing great now. Thanks for asking. I have taken a B 100 Complex. There's different brands and prices, so pick one that fits you. Make sure the vitamins are free from gluten. I have taken the eight B vitamins individually. It's just really what fits in with you. I personally don't like multivitamins because they...
    1 point
  25. Scott Adams
    We know that other things can cause villi blunting, this has been known for a long time, but the type of blunting caused by celiac disease is not identical to that of NSAIDs or other meds or issues that may cause blunting. But either way, we do know that people with celiac disease, and thus have the genetic markers known to be linked to celiac disease, get...
    1 point
  26. knitty kitty
    Did you know thiamine helps zinc get absorbed? "Role of vitamin-zinc interactions on in vitro zinc uptake by human erythrocytes" https://pubmed.ncbi.nlm.nih.gov/15235145/
    1 point
  27. Posterboy
    Blue Sky, If you are worried about Zinc levels in IBS and other GI patients. You need to be taking some Niacin(amide) aka Vitamin B3. It is true that Iron and Zinc levels.....are often low in Celiac's and other GI suffers???? But could they (deficient Iron and Zinc levels) be a proxy for Low Stomach Acid and Low Niacin levels! According...
    1 point
  28. Posterboy
    This applies to Diabetics too! (see the link at the end of my response on thiamine supplements... Wheatwacked, I broke the Thiamine comment into a different response because while related issues (Magnesium helps Thiamine utilization in the body (they are totally different questions)) in a lot of ways... I am not expert on Thiamine....coming...
    1 point
  29. NNowak
    I’m with you 150%!! I spent $10k out of pocket last year with insurance ponying up 90% of the rest for a GI to tell me I might have overactive nerve endings. After 3 years with my internist and MS like symptoms including a fall on my steps resulting in 4 broken vertebrae, 2 broken ribs, a punctured lung and a week in the hospital - my internist failed t...
    1 point
  30. NNowak

    These days...

    The best I’ve ever felt was when I healed after my diagnosis in my mid 20s. I KNOW this is what you have to look forward to because you’re quite the firecracker. Your life is full and you have dreams to achieve. Also, once healed, the chances of a major set back with accidental cross contamination are slim. So travel is possible without bringing your ref...
    1 point
  31. cyclinglady

    Introduce myself

    What a story! Although bits of it are different, it shares a common theme that so many celiac.com members have shared. I am glad that you are on your way to a complete recovery! Like you, I was anemic always. It was blamed on a genetic anemia, Thalassemia and the fact I was a menstruating women. Just by luck, I went in for a routine colonoscopy...
    1 point
  32. cyclinglady
    Undiagnosed or poorly-managed people with celiac disease may be deficient in vitamins and minerals. I was iron deficient (oddly nothing else) when I was diagnosed. My doctor recommended an iron supplement just until my iron levels improved. Once they improved, I stopped taking a supplement and focused on getting my iron from food sources. But with...
    1 point
  33. Posterboy
    DesperateladySaved, I have tried to encourage people to take another look at low or No stomach acid as a contributing factor in their GI problems. But I seem to have done a poor job educating others of this association because few people believe me. https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid...
    1 point
  34. Posterboy
    DesparatelySaved, I noticed your blog post. I created my posterboy blog to explain some of the things that helped me too! Here is post that summarizes some of the things that helped me. Maybe it will help you too! https://www.celiac.com/blogs/entry/2167-open-letter-part-1-to-fellow-gi-sufferers-etc-like-ibs-uc-and-other-gi-diseases...
    1 point
  35. Cary
    I feel your pain. I was undiagnosed Celiac for decades because even when a doctor finally said hey, you kind of sound like you could have Celiac, because I have constipation, we didn't test for that. I really needed my doctor to know that even a Celiac can have constipation. In my case my colon is too long and therefore has extra twists and it doesn...
    1 point
  36. Darren

    Dates

    Must not be easy. Perhaps the silver lining is that you can think of it as a screening process. Someone who truly cares for you will not try to brush it off, they will ask about it and will want to learn. You have lots of life ahead of you and things will be ok, might not seem it right now but life has a way of working things out most of the time. Same with...
    1 point
  37. Debra N
    I feel for you and your plight with the doctors. I had an incident with a pain doctor when i needed a nerve root block because I have a Sciatica and had really bad shoulder and low back problems from a car accident. The doctor had a God complex and he said I was addicted to Opiates when I took 3 - 325/5 mg tabs of Vicodin per day for 3 months. He said I was...
    1 point
  38. Mr Wheat Free

    Cancer Fighting Regim

    Niacin is supposed to be helpful with fighting cancer: http://www.alternative-cancer-care.com/niacin-vitamin-b3-and-cancer.html A Gluten Free diet may also help the body fight cancer by reducing the activity of the PD1 receptors that inhibit the immune system: http://www.ncbi.nlm.nih.gov/pubmed/24955707
    1 point
  39. LauraTX

    New To Site

    Welcome to the board, Holly! :) This section you posted in is more for personal blogs (A lot of people post recipes, stories, etc) and if you would like to create a new topic on the main board, you will definitely get more replies. Unfortunately, the road to recovery from a glutening or non-compliant diet is just going to take a while. All you can do is...
    1 point
  40. icelandgirl
    Oh...I'm so sorry. What a struggle! I want to send you (((hugs))) and positive thoughts. Do try to get in to see the Dr sooner...you deserve to feel good. I also understand the fearing food part. I used to be such a foodie and now I fear it. Kind of sad.
    1 point
  41. LauraTX

    Baby #2 Born January 2014

    My goodness, what a bumpy ride. Congrats on the new addition though, and best wishes for everything to hopefully be a little more smooth with your little darling :)
    1 point
  42. 124chicksinger
    You know what you owe other people outside your family? Zero. Nothing. When invited, you can simply say sorry, I can't make it. When invited to bring your mom somewhere, have the words ready, "oh, sorry, I can't, I'm busy that day." You owe nothing more than that. Their reaction is their problem, not yours, and you don't have to explain how you feel...
    1 point
  43. 1desperateladysaved
    I am happy to hear about Mom's consideration of your e-mails. It really is a hard thing for everyone. There will be bumps and twists. Keep going. You are now a detective and need to keep trying to figure out the things that bother you. It will help to keep records and analyze as you are doing. Also keep track of foods that help you feel better. ...
    1 point
  44. KCG91
    I think friends/family/partners who get a good understanding of how to handle adapting to Coeliac diagnosis and lifestyle go through a bit of a honeymoon phase... I think people who really care about us are determined to keep us safe and do everything they can to achieve this, probably expending a lot of time and energy on it which is probably a bit draining...
    1 point
  45. Porcelina

    My Friend: Pain!

    Thank you for helping me see the silver lining in this. Your story is the same as mine. I will stop moping and feeling bad about this and be grateful that I know my body is telling me something, instead of silently hurting me.
    1 point
  46. cyclinglady
    Very inspiring! I'm glad your kids are independent when it comes to household chores. It's a gift, that's for sure. So, glad you are feeling better!
    1 point
  47. w8in4dave
    Ohhh so sweet!!
    1 point
  48. Serenity1366
    I long for a clear head and energy. I have been 3 weeks GF with only 2 accidents. And the thought of having a clear head...one day - keeps me sane..ish!
    1 point
  49. jebby

    Celiac Disease And Pregnancy

    Hi, Thank you for commenting...I am happy to know that someone is reading! I think that this is a big reminder that Celiac Disease is a multi-systemic autoimmune disease which effects much more than the GI tract. I am a mom of 4 and I am very closely watching all of my kids for symptoms. My mother was not diagnosed until after I was, and looking back...
    1 point
  50. ClareB

    Is All Wine Gluten Free?

    i know this post is REALLY old but isn't there a (seemingly) new discovery of the sulfites in wine making some people sick? i think i've now seen sulfite-free wine, or at least they list "contains sulfites" on some labels...
    1 point
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    • Scott Adams
      This is great info, so thanks for sharing it. I had no idea Costco provides this service, yet I've been a member for over two decades. In the United States, all food manufacturers, including any that ship foods for sale in the USA, are required to comply with the Food Allergen Labeling and Consumer Protection Act (FALCPA) of 2004, which mandates clear labeling of major food allergens, including wheat, to protect consumers with allergies. Under this law, manufacturers must explicitly list wheat as an ingredient if it is present in the product, either in the ingredient statement or through a separate "Contains" statement (e.g., "Contains wheat"). This regulation helps individuals with celiac disease or wheat allergies avoid potentially harmful ingredients. FALCPA covers all packaged foods sold in the U.S., ensuring transparency and safety in food labeling while holding manufacturers accountable for accurate allergen disclosure. Failure to comply can result in regulatory action by the FDA, including product recalls or penalties. While the Food Allergen Labeling and Consumer Protection Act (FALCPA) requires clear labeling of major food allergens like wheat, it does not include barley in its list of mandated allergens, despite barley containing gluten, which can be harmful to individuals with celiac disease or gluten sensitivity. Since barley is not classified as a top allergen under FALCPA, manufacturers are not required to highlight it in allergen statements or use a "Contains" label, even though it poses risks similar to wheat for some consumers. Instead, barley may be listed under its common name (e.g., "barley malt" or "malt extract") in the ingredient list without additional emphasis. This regulatory gap means that individuals avoiding gluten must carefully scrutinize ingredient lists, as barley-derived ingredients can be less obvious than wheat. Advocacy groups continue to push for stricter gluten-related labeling, but currently, only wheat—not barley or rye—is subject to FALCPA’s allergen disclosure requirements. In general, this means that everyone with celiac disease should learn to read ingredient labels to be safe.  The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping.      
    • Jane07
      i really like Breyers ice cream and it used to have a label saying gluten free? is it still gluten free does anyone know i was wondering if the French Vanilla Black Cherry Napoleon  are still gluten free the label not on it anymore
    • Michelle Amirault-Packard
    • Jane07
      they gone down alot since my diagnosis .  the ttg test was done in a hospital it still not in the normal range 2 yrs later. the last time went up by the one before a little. maybe it just takes more time really trying to be careful i need to look at everything i eat to make sure 
    • lizzie42
      After my 3 year old daughter's diagnosis, we all got tested. My 5 year old son also came back positive with number 12x the upper limit.  We will confirm with another tTG and the other 2 tests in the panel.  He has zero symptoms that I have noticed. Maybe occasionally vomiting. He does have asthma. He's kind of an a**hole sometimes but also he's 5. He has SO much energy. Like miles and miles of biking, running, gymnastics. Never stops. Eats great, normal growth. It was comparing my daughter to him that made me push to figure out what was wrong with her!  Is it possible for a tTG test to just be totally wrong? 
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