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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. dixonpete

    Hookworms and ChatGPT5

    I asked a logical follow-up question to ChatGTP5: Can you estimate what percentage of celiac hookworm hosts like myself achieve full remission from the disease? ChatGPT said: Great question, Pete. Let’s be very clear here: There isn’t a single hard number published for “what percentage of celiacs with hookworms achieve full remission,” but...
    2 points
  4. dixonpete

    Hookwormed status report

    I should add that hookworms aren't a cure for celiac disease. Some people, and I couldn't tell you how many, stop evincing the symptoms of celiac disease while their hookworm colonies are healthy. Others have a reduction in the severity of their reactions to gluten, but should still stay well away from it. And other people don't seem to be helped much at...
    2 points
  5. dixonpete

    Hookwormed status report

    I was lucky (!) in that I would very quickly get sick after ingestion with something contaminated with gluten so it was easy to figure out the offender. I also had a very restricted diet and only ever introduced one new food item per day for this very reason. One memory that sticks out was pistachios. They put flour in the bag to stop the nuts sticking...
    2 points
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. miguel54b

    Hookwormed status report

    Thanks, I am desperate to find a cure too. 4am and I just figured out why I am not felling right (Beef jerky).
    1 point
  21. dixonpete
    Takes about about a week to heal up. Surprisingly painless.
    1 point
  22. John Scott
    You’ve touched on some big issues that really need evidence for a fuller understanding. I agree that we don’t need tuberculosis or trichinosis, and that the reduction in these and many other infections has undoubtedly contributed to the increase in longevity seen in the West in the past century. And yet some infections can actually be beneficial, as...
    1 point
  23. dixonpete
    Necator americanus is particularly well adapted to humans. Personally I don't know of any cases outside of accidental overdoses where Helminthic Therapy self-treaters have suffered harm from NA. Sometimes the treatment doesn't help, and very occasionally side effects are intolerable. In those cases, if desired the worms can be killed off. Regular medical...
    1 point
  24. 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
  25. Celiac16
    Oh my gosh I am reading my exact story… I just responded to a bunch of problems posts saying the same things… I do pretty much atkins too (under 20g carbs) which has been lifesaving in addition to thiamine. Symptoms are gradually improving, POTS isn’t as bad, and haven’t had the vertigo or nausea I had every time I ate. I think blood sugar may have be...
    1 point
  26. dixonpete

    Health update

    I forgot to address the 'gross' factor you mentioned. Over these last six years that I've been doing HT I've come to greatly respect Necator americanus. It's supremely adapted to humans, and I believe its presence is actually a requirement for good health for many people. I think I read that most all mammals carry hookworms in their gut in nature. It...
    1 point
  27. dixonpete

    Health update

    Hi Diana, The hookworms are a must for me as the improvement in colitis is life changing. Not having to worry and gluten or gluten contamination is simply a huge plus. You might remember the last time when I wrote about being without hookworms and consumed a meal of non-gluten-free oatmeal. I suffered a complete bowel evacuation and darn near passed...
    1 point
  28. Scott Adams

    Day 10 post inoculation

    It's not semantics, if you don't get your antibody levels checked you won't know if your autoimmune reaction is ongoing. A treatment that might mask the symptoms (my doctor gave me many of these) does not mean you are disease-free and that you won't suffer future consequences of not treating the root cause of it--in this case by going on a gluten-free diet...
    1 point
  29. dixonpete

    Day 10 post inoculation

    By gluten test I meant not having GI symptoms from consuming gluten. I've been around this block a few times now. If my hookworms are healthy, then so am I.
    1 point
  30. Charliexxx

    Here Goes The Cold Water.

    Hi Justin, I am so sorry to read your story. I can empathise, the severe depression, the dropping out of studies, sleep problems and all the issues with the stomach. You finally have a diagnosis and yes it can really just be celiac disease. There’s access to lots of information and support. The science bit, I won’t be technical but if we cannot abs...
    1 point
  31. trents
    Maddie, I believe you are referring what is known as the Marsh scale. It rates the damage done by celiac disease to the villi that line the small bowel. They take samples from the lining of the small bowel with a scoping tool and then send it to a lab for viewing under a microscope. The amount of damage to the villi is given a rating of 1-4.
    1 point
  32. Posterboy
    To All, Because Editor is now locked down tighter than a Tick.... I wanted to edit the comment for clarity.... So I adding ETA for clarity.... Read it ALL when you get a chance..... I meant to say....but didn't clearly communicate it properly.... Also see this Case Study of Hallucinations that got better in a Celiac Patient AFTER...
    1 point
  33. Posterboy

    Vitamin Deficiency Testing

    Knitty Kitty, Thank you for starting a blog post about this information. Test(s) often marginalize a deficiency even when taking a B-Vitamin/complex can help many people even when the cut-off for the test show a marginal deficiency. See this research that shows over a 1/3 of women in the UK has a marginal Riboflavin deficiency and nearly a...
    1 point
  34. GFinDC

    Introduce myself

    Hi Keight, Fatigue is fairly common in newly diagnosed celiacs IMHO. It can take some time to get the gluten-free diet down right. Mistakes are common enough and even one can set healing back for months. People are often lacking some vitamins and minerals also, and that slows healing as well. Plus not absorbing carbs and fats well reduces the...
    1 point
  35. NNowak

    Introduce myself

    Welcome!!
    1 point
  36. Posterboy
    Cyclinglady, If you go back and look at the link I quoted it was about a Riboflavin deficiency also known as Pellagra Sine Pellagra...NOT Pellagra.... but close enough to mimic GI Problems without Skin Involvements.... I was telling Ch88....I got it wrong....I did not have Pellagra because my skin was not involved in my diagnosis...it was a...
    1 point
  37. cyclinglady
    Celiac.com has many many members —thousands. Has any member actually been diagnosed with Pellegra by a medical doctor? Has anyone after World War II been diagnosed in the U.S.? “Improved socioeconomic conditions, change in dietary practices, and food fortification with niacin were all responsible for the eradication of pellagra from the post–Wor...
    1 point
  38. cyclinglady

    Intermittent Fasting,

    Wow! Congratulations, Ennis! I am so happy that the vomiting stopped. I have been researching intermittent fasting. Right now, I am doing just 12 hour fasts. I would like to do it a little longer, but my down fall is drinking coffee in the morning with cream. Some days I try for just plain tea and can go 14 to 16 hours. I do not plan...
    1 point
  39. Ennis-TX

    Lemon Ricotta Scones

    Fresh out of the oven for easter
    1 point
  40. Scott Adams

    Is All Wine Gluten Free?

    There isn’t any evidence that corks would contain gluten, or wine for that matter. Even if the barrels are made in the traditional way the wines don’t contain gluten. The very last thing any wine producer would want would be wheat paste sediment floating around in there wine!
    1 point
  41. 1desperateladysaved
    Go Ninja! The Lord can carry us when we are babies and when we are old and gray hair, and you ain't there yet!
    1 point
  42. 1desperateladysaved

    Stay At Home Mom

    I use to close my self in a relatively safe room with the little ones and have a nap. Younger ones went down for a nap in their crib every afternoon. All of my children survived and they learned many things they wouldn't have otherwise. It is hard, but so are most jobs. Hang in there.
    1 point
  43. icelandgirl

    Stay At Home Mom

    I'm sorry...that is so hard. I am also a stay at home mom and it's been tough. The days when I was running to the bathroom 10-20 times a day were so hard. I felt so bad for my kids too. I hope you find some answers soon. ((((Hugs))))
    1 point
  44. nvsmom

    Baby #2 Born January 2014

    :) Congratulations!
    1 point
  45. 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
  46. MGR

    Day Thirty One

    I am also on a gluten challenge at the moment, I am on week 7 and I found that after week 4 my symptoms changed a bit. After the initial severe shock to the system after having been gluten free for two months prior to the challenge, I now have a constant tummy ache, joints on fire, constant tiredness, etc, etc and general desperation!! I am very grateful...
    1 point
  47. wheatisbad

    I Need To Vent.

    I know exactly how you feel, one thanksgiving when I still lived with my dad he took me half way across the country to see his family and promised me he would supervise the cooking and make sure I had a plate of food to eat so I didn't just stand there and watch every one else eat on thanks giving. Low and behold, he hands me a plate of turkey, and I asked...
    1 point
  48. niese
    That is awesome news, so happy for you! God is good!
    1 point
  49. JordanBattenSymons
    I found out 3 days ago and it feels like the world has something against you. Why has it made you different to everyone else. But you have to really on sites like this, these sites let people like us come together, become strong and fight back. It lets us say "no, we will not let you, I still have my life".
    1 point
  50. Greebo115

    I'm Sorry

    I think I know exactly how you feel........and I think you know these feelings will go away soon when you get completely over that last glutening. Mine bites me in the bum like that too! xxx
    1 point
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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      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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