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    dixonpete

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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

    Thiamine

    To All, No discussion on Thiamine is complete without considering which Thiamine Supplements are the best absorbed by the body. See this Hormones Matter article about choosing which Thiamine Supplement is best for you. https://www.hormonesmatter.com/navigating-thiamine-supplements/ The hardest thing about Vitamin supplements is finding...
    1 point
  29. 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
  30. 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
  31. Wheatwacked
    Recently upped my magnesium to 500 mg magnesium oxide b.i.d. and it may be helping. I've always been a night person. Wide awake at 2 am., sleepy when the sun comes up. There is always something. For a while it was prostate every two hours (male by the way), that went away with gluten-free, then backpain woke me every two hours and sleep apnea every two hours...
    1 point
  32. 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
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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
  39. 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
  40. 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
  41. 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
  42. Fenrir

    Colonoscopy

    That sucks, hopefully they figure out what the issue is.
    1 point
  43. 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
  44. 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
  45. 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
  46. 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
  47. 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
  48. w8in4dave
    Ohhh so sweet!!
    1 point
  49. 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
  50. 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
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    • DebJ14
      As my doctor said, you don't have to eat breakfast food for breakfast.  I may have a leftover piece of chicken and left over squash or eggs or I am actually more likely to skip breakfast as I do intermittent fasting.  In that case I eat lunch around 11:30 and have some guacamole and a salad with chicken or tuna.  For dinner I have pork, shrimp, chicken, lamb, or turkey with half a baked sweet potato and some broccoli, green beans, beets, carrots or cauliflower.  I do not eat any grains on the advice of my doctor.  I do not eat commercially processed products, even if they say they are gluten-free.  I make Warrior Bread every few weeks.  It has no yeast and contains almond flour and dried sweet potato.  Very tasty too.  A good book to help in this regard is No Grain, No Pain by Peter Osborne.  Thankfully, I can eat coconut and nuts and use those flours in baking and also use nut milks in cooking.  Since I am allergic to chocolate and vanilla, lemon is my go to flavor for something sweet.  My migraines totally disappeared once I went gluten and casein free.  I can occasionally eat certain high fat cheeses that are low in casein, as well as grass fed butter.  I use lots of Organic Olive and Avocado oil. The problems I thought I had with nightshades went away when I went fully organic.  And, the rest of my issues went away by avoiding the foods I tested positive to as well as avoiding all grains. I will be the first one to say that it is a very expensive way of eating, but thankfully we can afford to eat that way.  The good news is that I take no prescription meds at age 72.  At 54 before diagnosis, I was a mess and on a boatload of pharmaceuticals.  
    • lmemsm
      With that many foods removed from your diet, what do you eat?  I also have histamine issues and migraines so that takes out certain trigger foods and high histamine vegetables.  Have allergies to coconut and issues with nuts so those are out.  I'm beginning to think I may have to remove dairy and some of the grains beyond wheat to get allergies under control.  Just having so many issues figuring out what to make at meal times.  What's a typical breakfast look like for you?  Thanks.
    • knitty kitty
      @Healthforme, No prescription needed for thiamine hydrochloride, Benfotiamine, and TTFD (Tetrahydrofurfuryl Disulfide).  They are available over the counter.   Thiamine Mononitrate is not recommended because the body doesn't absorb or utilize it well.  
    • knitty kitty
      @Zuma888,  I'm so happy you're feeling better!   Thanks for letting us know of your improvement!
    • RMJ
      HLA-DQ2 is NOT a continuum 2.01 to 2.99, but I don’t understand HLA genetics well enough to explain it further.  It is not just one gene that is either this or that.
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