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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
    Responding to the topic about cough with Reflux......I don’t have Reflux, but a severe case of esophagitis (that I’ve had since 2007). My pulmonologist told me this week that the cough was from acid in the esophagus, not allergies as I had thought for years. Incidentally, I had to go off my nighttime Benadryl recently in order to start a different med to ...
  2. NNowak
    What a horribly frustrating experience for you and your daughter. I’m very sorry. Mom’s do know best. I have 3 sisters. I was diagnosed 25 years ago with some positive antibodies and a biopsy that showed blunting of the villi. Regrettably, I had complete trust in the Dr and didn’t get copies of the tests. One of my sisters had stomach issues like ...
  3. NNowak
    I literally just had this discussion with a physician today. If it’s from gluten containing grains, no amount of distillation will remove the gluten. Some people might not react, but chemistry doesn’t lie. I’ve tried gluten removed with negative consequences. Just my 2 cents.
  4. NNowak
    Update: I followed up with my pulmonologist regarding the granulomas in my lungs and liver. He assured me it was not sarcoidosis or anything else to worry about, and asked what my liver biopsy showed. Apparently with high ferritin and granulomatous changes in the liver, a biopsy is the next step. I explained my experience with the GI, and he knew exactly...
  5. NNowak
    As we often say, not everything is attributed to Celiac. Corn is a common sensitivity/allergy for a number of people. It seems Celiacs are just as prone to other food sensitivities as everyone else. Perhaps keep track of what triggers ill feelings and keep a diary. Personally, I don’t eat “mainstream” cereals. I rarely eat gluten-free cereals from the glute...
  6. NNowak
    I just had an EGD and colonoscopy last month. I returned to my original GIs office after my second GI retired. There was zero information given to me other than a simple lab report stating esophagitis, hiatal hernia and peptic duodenitis. Eosinophils and H.Pylori were excluded. My initial appointment with the PA had an extensive list of issues to rule out...
  7. NNowak
    If you’re gluten-free already, next step is to identify other factors that irritate your system. Keep a diary of food, meds, symptoms and you may find a pattern. I’ve dealt with your symptoms and many others for most of my life, and have been a diagnosed Celiac more that half my life now. The GIs can’t seem to find a resolution (just finished with my 3rd) ...
  8. NNowak
    Oh my!! I’ve had sclerosis for 13 years. Thought it was leftover from my HELLP syndrome after my last pregnancy. I’ve been taking diuretics to keep that and other edema under control. Vitamin deficiencies make sense as I’m low I’m several already. Super.
  9. NNowak
    Welcome!!
  10. NNowak
    I was diagnosed 24 years ago, avoided Drs like the plague due to a busy household and limited finances. Also, very leary of the typical Celiac experience of being discounted because I’m ‘doing this on purpose,’ or it’s all in my head. That thinking lead to a fall on my steps fracturing my spine in 4 places, breaking 2 ribs and puncturing my lung. ...
  11. NNowak
    On the contrary, once you’ve healed a bit more you will have more energy than you know what to do with. I was diagnosed 24 years ago and started distance running when I recovered enough. I’m far healthier than I was before.
  12. NNowak
    As cyclinglady said, it can take well over a year to recover. Nutritional deficiencies can impede healing, zapping your energy. Let yourself rest, attempt low impact daily exercise to get the blood pumping, and make sure your diet is healthy and balanced. Your doctor should be aware of your concerns as not everything is due to Celiac. Hope you feel...
  13. NNowak
    Happy New Year from Michigan!
  14. NNowak
    Ugh!! I agree!! Sounds like you have your bases covered. Hopefully you’ll walk away from this with renewed health, strength and energy. Best wishes!
  15. NNowak
    Check your fortified foods and any supplements. My deficiencies are from malabsorption - I consume meat daily and the fortified soy or coconut milk. There are medical issues related to high B12 and exhaustion. If you are satisfied those issues aren’t present, the 2000 B12 isn’t concerning. The exhaustion is menacing though. That needs to be addressed.
  16. NNowak
    No, my sister is exhausted all the time. It’s extremely difficult to give blood in a weakened state then expend energy to make more blood. I also have a B12/Folate deficiency, which was much more of a factor with my malaise, headaches and profound exhaustion. Have you been checked for nutritional deficiencies?
  17. NNowak
    My sisters ferritin was over 1,000 at diagnosis. Mine hovers between 400-600. Blood letting is exhausting and taxes the body. I’d recommend a hematologist to guide you through this. There are other disease processes that cause NAFLD that can progress into cirrhosis. In my experience with doctors, the autoimmune process is a mystery that requires more than 1...
  18. NNowak
    We have both of those challenges in our family, and a few more. First, have you had the genetic testing for hemochromatosis? This is very important because another important reason for high Ferritin is an inflammatory response. The body protects itself from free radicals (iron) during a crisis, so it grabs all the loose iron and stored it in the liver (high...
  19. NNowak
    All of my children have been tested at least once for Celiac (blood). Those that tested negative and have symptoms are screened by blood every other year (my youngest two). I’m considering an EDG for my 13 year old daughter with NCGS to determine the true status of Celiac at this time. Her immunologist has recommended it due to her chronic stomach pain a...
  20. NNowak
    First of all, you sound like a fantastic mom - please relax. I have Celiac and both of the genes. My two boys have the DQ8 gene, and the two girls have the DQ2 gene. My oldest child was diagnosed with Celiac at age 14 months due to immune deficiency issues. The immune system is not fully mature until after age 2, so I had him retested when he was in 6th grade...
  21. NNowak
    Cyclinglady, I remembered about your AIG, and asked about autoimmune esophagitis/duodenitis with no response. I just drove to the GI office for my pathology report and to inform the practice manager about the nurses unprofessional conversation with me. That is why I left this office 20 years ago - my diagnosing GI had a horrible nurse. The manager was shocked...
  22. NNowak
    Hi Corrine, I agree 100% about the PPI. I’ve been on one since 2007 and it clearly doesn’t help prevent or cure the inflammation. That was one of the questions I sent the nurse - who then called to reel me i had to wait 2 months to ask the doctor. The symptoms of peptic duodenitis explain the remaining symptoms not addressed by the B12 deficiency. Du...
  23. NNowak
    The endoscopy was done at the EDG/Colonoscopy clinic in their office building. The GI said my labs had some “red herrings,” and recommended I go to U of M. I asked him about the granulomatous changes in my liver from my latest CT. He hadn’t read that, but said that’s another “red herring.” So I’d like to have the correct information to adequately discern my ne...
  24. NNowak
    I haven’t received a copy of the pathologist report. I sent two messages to the office immediately following my scopes; the first included my report and pictures from the last EDG done by a different GI who has since retired, and the second was to ask specifics about the pathology report (Marsh category, refractory sprue, mast cells, parietal cells, eosinophils)....
  25. NNowak
    I posted several months ago about my health issues 24 years after my Celiac diagnosis. My biopsies came back positive for Peptic Duodenitis, and my esophagus is extremely inflamed with a hiatal hernia - negative for H. Pylori. Celiac antibodies are undetectable. Since an accident 3 years ago that resulted in multiple back fractures, rib fractures and a pneumothorax...
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