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NNowak

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by NNowak

  1. NNowak
    I’ve had erosive esophagitis since 2007. The GI put me on a PPI at that time. In 2017 I had an autoimmune flare that is just now resolving with the diagnosis of 2 additional autoimmune diseases. A different GI did an EDG and colonoscopy, discovering a worsened state of esophagitis, hiatal hernia and peptic duodenitis. His comments to my husband while I w...
  2. NNowak
    I was diagnosed at 24, had a period of infertility before my first child was conceived, then 3 miscarriages and 3 more live births. Looking back, I had undiagnosed MCAS and B12/Folate deficiencies. At age 48 I’m finally with a specialist that looks at everything rather than segmenting my symptoms and pushing me off on another doctor. Hope this a...
  3. NNowak
    Ennis TX is correct, each time you “poke the bear,” you risk additional food sensitivities, or autoimmune conditions. Accept that you will be tempted to eat things that are convenient if you don’t plan in advance and eat a well balanced diet. Hunger and cravings are not our friends. Celiac is a type IV hypersensitivity so most symptoms occur at 12...
  4. NNowak
    I was diagnosed at age 24 (1995), prior to children. I have both genes (HLA-DQ2 and HLA-DQ8). My first child was born in 1998 and 5 months later diagnosed with immune deficiency. At 14 months a celiac diagnosis was obtained with a genetic profile of HLA-DQ8. I had three miscarriages and 3 more live births. My 2 boys both have the DQ8 gene and my 2 girls...
  5. NNowak
    This particular flare was due to mast cell activation syndrome and SIBO. Celiac symptoms vary by individual, so don’t measure your experience with anyone else’s. You are not well and you feel it. The bone broth I use is Kettle and Fire and Dr. Axe. Kettle and Fire is available on Amazon and my local grocery store. I order Dr. Axe from that website - I...
  6. NNowak
    My symptoms were extreme weight loss, pain and loss of balance/coordination, extreme exhaustion, severe migraines 15 or more days each month, nausea, hair loss, severe stomach pain in my URQ after eating, chest pain, watery black stool and confusion. After three years of nagging my internist and an accusation of anorexia, the labs revealed zero folate and...
  7. NNowak
    I’m terribly sorry you are struggling. It can take some celiacs 10-15 years for diagnosis. My recommendation is to see a functional medicine doctor ASAP and ask for testing for Celiac and NCGS. They will probably do a stool test to determine malabsorption and microbiome composition. Being a weight lifter, I’m confident you know what it feels like to be wel...
  8. NNowak
    I, too, have the insidious itchy, blistering rash on the backs of my hands!! Recently I’ve identified nightshades as a trigger for my celiac symptoms, including the rash. Histamines are also an intolerance now. Lectins bother a lot of celiacs, so you may want to look into that. IBS and SIBO commonly affect us, too. After 25 years of navigating t...
  9. NNowak
    It seems you have a flare that surfaced around the New Year. Nausea has been a constant through my lifetime, so I’ve learned a few things. Peppermint essential oil in a diffuser or dabbed on the inside of your wrists (use a carrier oil like sesame if you use on skin), raspberry tea, ginger tea, bone broth soup (Kettle and Fire has several varieties). Micro d...
  10. NNowak
    Hey Posterboy! This is certainly interesting! Are you donating blood on a schedule to reduce your ferritin? My levels have been bouncing, so my doc is tentatively thinking it’s due to systemic inflammation. The verdict is in with my target areas - first, my guts need to heal enough to be able to absorb meds. My thyroid is being addressed as well a...
  11. NNowak
    My first thought is to follow up on your celiac labs just so you know where you stand. The next thing I would do is to keep a food diary - tracking your food, meds and symptoms. It’s common for celiacs to develop food intolerances and/or allergies. For example, lectin or histamine intolerance, casein (dairy protein) allergy, red meat, and definitely review t...
  12. NNowak
    In my experience (sushi lover for years) the sticky rice is not gluten-free. I was recently exposed to gluten with the sticky rice after going through all the precautions at a restaurant we frequent. When the nigiri didn’t fall apart in the tamari, I should have know. It’s consistently been explained by servers that the binders in sticky rice are not glu...
  13. NNowak
    Corinne, That’s great about your scopes! Play it by ear with the steroids - they can be incredibly effective. As far as the vitamins and labs, vitamins can be exceptionally irritating for someone with GI issues and the labs measure only the levels in your blood, rather than the levels available to your body. Methylation is required to absorb vitamins a...
  14. NNowak
    YES!! That’s where my pain is, although much less frequent than ever before. A recent EDG showed peptic duodenitis, hiatal hernia and esophagitis - for no apparent reason. I started intense bone broth and collagen consumption the first week of September 2019. This has allowed significant healing of my GI, I regained some weight and reduced pain I’ve had...
  15. NNowak
    Thank you, Gemini. I’m fortunate that the first 20 years of being a Celiac I was cared for by a smart OB/GYN. That practice respected the fact I do research, and was always willing to discuss my concerns. The changes in insurance mandated I have a primary care physician in 2017, in order to get to the bottom of my fall and obtain answers regarding my c...
  16. NNowak
    When I was diagnosed 25 years ago (blood and biopsy) I was told to avoid gluten for 3 months, then I should be fine. “Most people with nontropical sprue can tolerate some gluten,” said this GI doc who is a teacher at MSU, and the senior partner of the now very large GI office I had to return to. My OB/GYN ordered the genetic testing a few years later - I...
  17. NNowak
    With you being gluten-free for an extended period of time, I believe the only other test available is a genetic test. You cannot have celiac if you don’t have one or both of the genes. The antigliadin antibody is now the biomarker for NCGS, but the labs don’t run this as part of the celiac screening now as it was replaced by the DGP. Depending on when you...
  18. NNowak
    I’m sorry to hear you aren’t feeling well. My first thought when reading your post is that you wouldn’t have visible damage from just one or two accidental exposures to gluten. Inflammation below the first mucosal layer would be unlikely after only one or two accidental exposures to gluten. You need to find out the source of regular gluten ingestion/inhal...
  19. NNowak
    25 years ago when I was diagnosed, protocol was somewhat sloppy. The GI diagnosed me based on my bloodwork and did an EDG at least 6 months later. I hadn’t eaten anything but baked potatoes and eggs for probably 8 weeks prior to the biopsy. My villi showed “blunting,” and the GI recommended a gluten-free diet for a few months. “Most Celiacs can tolerate a littl...
  20. NNowak
    First of all, please don’t feel defeated. It’s wonderful you have a direction now that you’re diagnosed. I was diagnosed 25 years ago immediately following my gallbladder removal. Subsequent food sensitivities were identified, such as; dairy (protein allergy), sugars (eliminates most fruits), sugar alcohol (in sports drinks and vitamin water, etc), white...
  21. NNowak
    I’m so happy for you!! That’s how I felt, too, about 80% better. My stomach pain was also considerably less as well as the bathroom visits. There is a lot of research that states the very things we experienced, but the GI may say they’ve never heard B12 affect stomach pain or bathroom issues. Getting your life back is such a blessing!! Hope ...
  22. NNowak
    It sounds like the correct procedure was followed to diagnose you properly. Please understand that Celiac is an autoimmune disease. The serum tests available to us are not sensitive, which means a lot of damage is done before there is a positive result. When you keep poking the proverbial bear with careless habits, you will end up with additional health issues...
  23. NNowak
    There is a connection between Lyme Disease and Celiac. Research has shown the same two genes are prevalent in Lyme Disease and Celiac. I believe I first heard on a Podcast and then confirmed it through my own research. I’m not a doctor, or medical researcher, but it seems likely there’s a connection between Alpha Gal and Celiac due to the tick connection. Ho...
  24. NNowak
    Cyclinglady, you are a prime example of mind over matter, and so inspirational!! A little tweak with the diet to address health challenges, time and ambition makes those with autoimmune conditions unstoppable. I am soooo much healthier as a healed Celiac with far more stamina than I had as a child. Newly diagnosed Celiacs, and those feeling defeated with...
  25. NNowak
    Just a caution regarding the sports drinks and vitamin waters; they contain sugar alcohols which can be extremely irritating for anyone with GI issues. Personally, I double over with extreme stomach pain immediately upon ingestion. The coconut water is a much better solution for me, and I’ll definitely check out the tablets. I, too, deal with e...
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