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  1. trents

    trents

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  2. Scott Adams

    Scott Adams

    Admin


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  3. knitty kitty

    knitty kitty

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      15

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  4. cristiana

    cristiana

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      11

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Popular Content

Showing content with the highest reputation since 09/11/2024 in all areas

  1. AnnaNZ
    I started greying in my 40s, gave up gluten in September 2023 aged 59, have taken courses of Vitamin D, B complex and zinc and my completely grey hair has started to regenerate dark brown. Real visible proof of malabsorption.
    3 points
  2. ddk37

    Gluten Free Bread

    I need to correct something I wrote earlier this thread. The energy bars from Costco no longer have the Gluten Free certification on their labels. It disappeared sometime this year. The ingredients do not contain wheat, rye or barley but this product is processed in a facility where they also process items with wheat. I assume this is the problem. I...
    3 points
  3. Lockgirl

    Gluten Free Bread

    I was in love with BFree Baguettes but recently I found Against the Grain Rosemary Baguettes at my local Natural Grocers. I was not sure at first. At this store, it was in the frozen section. Once I got it home and opened, the bread texture looked a little weird. Then I tasted it...Unbelievable! I used to love real sourdough in the old wheat days, and I have...
    2 points
  4. glucel

    abnormal weight loss

    hi @knitty kitty I knew there had to be somebody else that liked liver. Hearing of your weight loss/recovery and seeing another half pound gain this morning helps relieve some of the anxieties associated with celiac disease. I never thought that I would get excited about weight gain. I am going to add a 100 g thiamine tablet at noon time and...
    2 points
  5. trents

    Celiac diagnosis

    Welcome to the forum, @Vickey Matteson! What you describe is actually very common in the celiac community. We call it "silent celiac disease". Silent in the sense of not causing significant discomfort or distress. After diagnosis, many silent celiacs look back and realize they did have some symptoms but they were so minor as to not grab their attention...
    2 points
  6. N00dnutt
    @trents Yep! That's Aussie slang. "Crook" = (Sick-as-a-Dog). My apologies, I forget that I'm chatting in a non-Australian forum whose members are not likely to understand my alien jargon. The everyday Aussie vernacular is distinctly ours. That said, it's taken a century or two of evolution to refine it from the original Pommy Rhyming slang that...
    2 points
  7. trents
    But that's the point Scott is trying to make. It is up to you. You do not have to go forward with another biopsy simply because your doctor wants you to. They work for you, not the other way around.
    2 points
  8. Mari

    Hunger

    Hi Edene - I usually feel hungry after eating a healthy meal. I also eat some food that has protein and fats or oils assnacks and I don't gain weight by eating extra food. If you are worried that you are not eating enough protein you could take a good look at your fingernails. Malnutrition often causes fingernails to break, crack or be too flexible. They...
    2 points
  9. trents
    I might suggest taking a bullet list with you to your next appointment with concisely worded symptoms and test requests. That would cut to the chase and economize the time you do have with the doc.
    2 points
  10. Wormsy22
    Sorry....I realized I did it wrong after hitting submit...and I ressubmitted to Knitty. Getting used to this interface....but thanks for the followup. You've built a nice community here. I've gotten more useful information in 24 hrs for free than I have in the past 12 mos for thousands of dollars. Now I'm hopeful some of it helps me TV
    2 points
  11. Scott Adams
    As this point do you really need a piece of paper with a formal diagnosis to tell you that you should not eat gluten? This is always the question I ask to those who seem to have figured out that they have a gluten sensitivity, but got bad instructions from their doctor about the testing protocol. Only you can answer this question, but would you keep eating...
    2 points
  12. icarumba
    I started getting symptoms of celiac in 2007, diagnosed in 2011, and now with 13 years of a mostly gluten free diet and now a strict gluten free diet (I used to cheat on vacation and holidays, but haven't for years now), at 71 years old (today is my birthday! lol) my hair is dark except for my temples and my beard is just grey on the chin, I'm very pleased...
    2 points
  13. Beverage
    I started going gray at 23, a very white streak that looked cool at first but quickly expanded. I did not have typical intestinal symptoms, lots of extreme allergies and got a lot of colds. I wasn't diagnosed with Celiacs until age 59. I realized the connection immediately. Now I'm 68 and normal greying for my age.
    2 points
  14. RMJ
    I hope your procedure was successful and that you get a definitive answer from the biopsies.
    2 points
  15. Scott Adams
    Celiac.com 09/16/2024 - Celiac disease is an autoimmune condition that affects individuals when they consume gluten, a protein found in wheat, barley, and rye. In those with the disease, the ingestion of gluten triggers an immune response...
    2 points
  16. Scott Adams
    While I understand wanting a formal diagnosis, it sounds like you will likely remain gluten-free either way, even if you should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal N...
    2 points
  17. knitty kitty
    @Ginger38, Call your doctor that treats your diabetes about the Januvia and about being at your tolerance level for the gluten challenge. Encourage this doctor to get the appointment with the gastroenterologist moved up. The increase in the dosage of Januvia may be causing side effects. "JANUVIA may have other side effects, including stomach...
    2 points
  18. Wends
    Hi from the UK also (up north). Have you heard of the Coeliac and gluten-related disorders ( neurological) researchers / specialists at NHS Sheffield Hospital and Uni of Sheffield? They are leading the way on the blood test for TTG6 (TTG2 is related to Coeliac disease). TTG6 is specific for neurological and gluten ataxia. These patients may or may not...
    2 points
  19. knitty kitty
    I found this article very interesting... Carrier frequency of HLA-DQB1*02 allele in patients affected with celiac disease: A systematic review assessing the potential rationale of a targeted allelic genotyping as a first-line screening https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7109277/ Not a doctor.
    1 point
  20. Grace Mattaliano
    Thank you so much, this is extremely helpful! I will highlight this in my project and mention the huge range in sensitivity as well as the need for the paste to be below 10 ppm to be safe for most, but not all. I am going to focus my project both on finding alternatives for people with wheat allergies and celiac disease and also people who do not have access...
    1 point
  21. CeeBee1807
    Thank you cristiana, I will certainly mention it. I will check out Coeliac Uk also, seems like I have a weekend of reading ahead but I want to make sure I go armed with all the correct information.
    1 point
  22. cristiana
    @CeeBee1807 Forgive the brevity of this post CeeBee as I cannot write a lengthier reply just now, but I have just read your post and wanted to say I think you are onto something. Do mention to your GP that you already have a relative with coeliac disease. Do also take a look at the Coeliac UK website before you see the doctor, they have a...
    1 point
  23. GreenEyedMama
    I was diagnosed Celiac in 2009, tried my best to follow a gluten-free diet but my PCP didn't explain to me what having Celiac Disease meant. Gave up the gluten-free diet in 2010, in 2011 I started getting gray hairs at age 25 around my temples. In 2022 my body decided it was done with me damaging it eating a regular diet and I ended up in the hospital. That...
    1 point
  24. Scott Adams
    To be safe, it's always best to go for products with at least "gluten-free" on their label, or even better, certified gluten-free.
    1 point
  25. Scott Adams
    Can you tell us the brand of salmon you are referring to? It's doubtful that gluten would be added in a canning factory in Thailand, but still possible. What are the full ingredients?
    1 point
  26. captaincrab55
    I had to show that I was diagnosed with dermatitis herpetiformis in order to get my health insurance to cover gluten-free brand name drugs instead of generic drugs that weren't gluten-free! drugs that weren't gluten-free
    1 point
  27. knitty kitty
    These are some of the symptoms I have had while deficient in Thiamine (and the other B vitamins). Tachycardia (chest pain) can be a symptom of Thiamine deficiency. Yawning can be called "air-hunger" or "sailors' asthma" and is a symptom of low thiamine because Thiamine is needed to help red blood cells carry oxygen. The part of the brain that...
    1 point
  28. N00dnutt
    Hi @Aleda D I consider myself extremely fortunate that I live in a country (Australia), which forces all food related service industries to acknowledge and label "ALL" Allergens. I struggle to understand why anybody would need to add pancake batter; Omelettes I make at home are fluffy enough without adding unnecessary items. I think it's generally...
    1 point
  29. Ginger38
    Procedures are done , thank goodness
    1 point
  30. glucel

    abnormal weight loss

    I had a triple bypass so do not eat cheese or butter but I use avocado oil freely. Do not eat potato chips etc every night anymore instead fruit and or bowl of cereal with nut milk. Diet is much cleaner now but qty remains the same. My diet seems nutritional enough and pretty much follows: breakfast- hard boiled egg, 1/2 oz beef liver, cereal: flax,...
    1 point
  31. Scott Adams
    Since you keep linking to the same site that has a focus on the microbiome, it's clear that you have a strong focus on the topic, but here it usually comes up in relation to untreated celiac disease, thus I've shared the research summaries that we've done over the years on how the two are related. Like many disorders, including celiac disease, it's clear...
    1 point
  32. trents
    Some studies, with admittedly small sample sizes, show that about 50% of celiacs react to the protein casein in dairy the same way they do gluten. Can't find the NIH article I'm looking for but this one basically makes the point:
    1 point
  33. Scott Adams
    In general I'm all for a formal diagnosis, except in cases where someone gets very sick when they eat gluten, and have already been on a gluten-free diet for a long time and don't plan to eat it again anyway. There seems to be more drawbacks that keep popping up with being formally diagnosed--at least here in the USA. I can testify that it's definitely...
    1 point
  34. trents
    Well, questions just can't be answered except by hands on experimentation I guess. Press on!
    1 point
  35. Scott Adams
    Celiac.com 09/12/2024 - Celiac disease is an autoimmune disorder where the ingestion of gluten leads to damage in the small intestine. This condition affects roughly one in 133 people worldwide, though it often goes undiagnosed due to...
    1 point
  36. Scott Adams

    3 month retest

    If your goal is to get a baseline reading without any outside supplementation in your system, then you could do this, however, I get my levels checked while I am actually supplementing to see where things are. You can have higher B12 levels, as this will nut hurt you, only if the levels are too low will this cause issues.
    1 point
  37. trents
    Ask for a more complete celiac panel that includes more than IGA antibody tests. Young children have immune systems that are immature and they often don't respond the same way to IGA antibody testing as adults do and so it can be valuable to check for IGG antibodies. Ask for: Total IgA TTG-IGA DGP-IGA DGP-IGG It is also possible she...
    1 point
  38. RMJ
    I also agree. I would add, be sure to wash your hands at the end of a shift, or before eating if you have a break and a snack.
    1 point
  39. glucel

    3 month retest

    I'm very sorry for confusion. I replied to my original post and explained that I did not see the decimal point. In reality the number went down from 189 to 22.6 three months later. The gastro office called today and the assistant said the doc sees it as good progress. Said nothing about weight loss or constipation.
    1 point
  40. Banana
    And yes, I am stuffing my face with toast. Next stop: cake.
    1 point
  41. trents

    Gluten Free Bread

    Are you aware of the big flap created recently by the testing Mom's of America had done on Trader Joe's bagels that showed they were way out of tolerance with regard to the 20ppm FDA standard for using "Gluten Free" claims? There was a big story that surface on this forum recently if you care to search for it. I would not recommend Trader Joe's as a safe...
    1 point
  42. Lockgirl

    Gluten free perfume?

    Pacifica is a great gluten-free company. They offer body balms, lotions, and perfumes all gluten-free and cruelty free.
    1 point
  43. Maggieinsc
    Great article. Fyi Americas test Kitchen recently tested corn chips. The late July chips were picked as the worst one. I have never liked them when Costco offered samples and occasionally bought a bag for my chip loving son. The Lays corn chips are gluten free- both fritoes and tostitoes. Not sure abt the flavored ones. Bought a huge bag -32 oz- of fritoes...
    1 point
  44. KaysMomma

    Fainting and blackouts

    The gastro dr didn't seem overly concerned about her blacking out after eating. I have settled it on a vagus nerve stimulation. She also now blacks out when nervous such as in social situations, getting up infront of crowds or being scared of something which can also be vagus nerve related. She hasn't done it again because of eating. I suspect she was so...
    1 point
  45. knitty kitty

    Gluten free perfume?

    I Googled "wheat in perfume" and got lists of perfumes that contain wheat.
    1 point
  46. knitty kitty

    Fainting and blackouts

    Thought this article would be of interest here... Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/
    1 point
  47. cyclinglady
    When my husband went in for scheduled surgery, the hospital delivered in a tiny refrigerator in his room so that I could fill it with gluten-free foods that the nurses could give to him if I was away from the hospital. I also talked to the hospital pharmacist before the surgery and the dietitians. The hospital was pretty good about gluten free options for...
    1 point
  48. Jenny8413
    "Only ate what was sealed from the original company, like yogurt"...this seems to be the easiest way for hospitals to accommodate. They should have a supply of sealed individual serving packets of gluten-free & nondairy foods (which is really quite easy!) such as canned tuna, chicken, sardines, packaged deli meats, olives, cheese, hard boiled eggs, rice...
    1 point
  49. Jules Shepard
    Fluffy, yummy, subtly pumpkin-y (is that a word?!) pancakes that just beg for the cooler temperatures of autumn! Decorate with strategically placed berries or chocolate chips to make jack-o-lantern pancakes! Ingredients: 1 1/4 cup Jules...
    1 point
  50. Jefferson Adams
    Just about everyone's favorite. Pancakes have to be at the top of the cravings list for people new to a gluten-free diet. Good gluten-free pancakes are definitely at the top of the favorites list for gluten-free folks in the know. However...
    1 point
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    • trents
      Digestive enzymes won't help with gluten disorders per se but can often help with pancreatic enzyme deficiency related digestive problems. I'm not sure that having an IGA deficiency necessarily predisposes one to decreases in infection fighting ability but that's a good question to ask your physician. 
    • sophierecette
      Thank you for sharing your journey—it sounds like you've been through a lot, and you're being incredibly proactive about your health! Celiac disease and gluten intolerance can be tricky to navigate, especially when there’s conflicting advice from different doctors. It’s great that you’re feeling healthier on a gluten-free diet, but I understand the frustration of wanting a definitive diagnosis. To answer your question about reintroducing gluten for the test, it’s important to follow your doctor's advice carefully. The "gluten challenge" (which is what you’d be doing to trigger an accurate test) typically involves consuming gluten daily for about 6 to 8 weeks. Most guidelines recommend eating 1-3 slices of bread per day (about 3 grams of gluten daily) to ensure enough gluten exposure for the test to detect damage or antibodies. Given your small size, you might want to start slowly with 1 slice of bread or the equivalent (like a small bowl of pasta), but consult your doctor or gastroenterologist for specific recommendations. It's crucial that you maintain the gluten intake during the period, even though you might experience discomfort, to ensure that the biopsy or blood tests can accurately assess whether you have celiac disease. Also, it's helpful that you’ve seen improvements in your health on a gluten-free diet. Keep monitoring your symptoms closely during the gluten challenge, and make sure to communicate everything to your gastroenterologist. Ultimately, the goal is to get a clear diagnosis so that you can make the best decisions for your long-term health. Stay strong through the process—you’re doing great in advocating for yourself!
    • Neat1
      That’s a really interesting idea about IgA deficiency. I’ve had chronic sinus infections for more than 10 years as well. I’ll bring it up next time with my PCM.    in the meantime I’m going to supplement B1 and see if there’s any change. I’m also doing l. reuteri plus a regular multistrain probiotic which seems to be helpful. Do digestive enzymes help at all, or it’s a ymmv situation?       
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