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DebJ14

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

Everything posted by DebJ14

  1. DebJ14
    I was tested for nutrient deficiencies and Thiamine was not my problem. The doctor uses the Spectracell Test for Micronutrient Deficiencies. I was deficient in Carnitine, Magnesium, multiple antioxidants, D, Selenium, B12, B6 and a long list, just not Thiamine.
  2. DebJ14
    Migraines ran in my family, on my father's side. All of my female first cousins on that side, and our grandmother suffered from Migraines. Grandmother died in 1984 so we do not know if she ever would have been diagnosed with celiac disease. However, all 4 of us cousins were diagnosed with celiac disease between 2003 and 2007. The dermatitis herpetiformis...
  3. DebJ14
    I did well on gluten-free, but continued to have issues a year down the road. Testing for food allergies and sensitivities revealed severe IgE allergies to yeast and dairy as well as food sensitivities to 23 other foods. I got better after taking out those foods, but it was not until the doctor recommended I go completely grain free did all my issues resolve...
  4. DebJ14
    Personally, I would get a new GP. Advice to continue eating gluten, even after a Celiac disgnosis, is ridiculous. Clearly the GP knows nothing about the disease. That advice could be dangerous to your health. I too found out by accident. I was searching for help with ulnar neuropathy. The first doctor took xrays of my elbow and hand. Surprise, surprise...
  5. DebJ14
    Our son was put on Minocycline for his acne. It did not solve the acne problem. He developed drug induced lupus and pericarditis from it and missed an entire year of high school. He literally went from playing football to bedridden in a couple of weeks. His PCP tested him for genetic antibiotic resistance and he cannot take any drug in the Tetracycline...
  6. DebJ14
    Our Functional Medicine doctor has always ordered the Spectracell Test for Micronutrient Deficiencies. It tests the intracellular levels of the nutrients, not blood levels. When high dose, targeted supplementation did not resolve the deficiencies after retesting at 6 months and then a year, he ordered genetic tests. I have a genetic inability to process...
  7. DebJ14
    It was a long road to get to this point, but we have discussed many times that if my husband had not seen the remarkable transformation in my health with just diet and supplements, he never would have accepted the advice of this cardiologist. He would have thought he was a quack and found another doctor. As it was, he was leery of seeing this guy, but his...
  8. DebJ14
    I had an Elisa blood test for 90 Antigens run looking at IgG4 and there were 23 foods on the list that I reacted to. Some reactions were mild, some moderate and some severe. My yeast numbers were off the charts so they also did traditional allergy testing for IgE on both brewers and bakers yeast, They came back super positive, so all yeast is out. The...
  9. DebJ14
    My husband has had occasional A fib since 1986. He spent years on Digoxin and Quinidine, with no reduction in the number of episodes. Then, he was put on Verapamil as a pill in the pocket and did fine for about 5 years until it stopped working for him. Then he went on Flecainide as a pill in the pocket. His first 2 cardiologists had him on a "heart healthy...
  10. DebJ14
    I had the exact opposite thing happen. Prior to my diagnosis and introduction of the gluten-free diet, I was sick all the time. My file at the ENT was so thick because it was one upper respiratory infection, one sinus infection, one ear infection after another. Year after year after year. I have only been sick once in 18 years and I know exactly who gave...
  11. DebJ14
    Good luck to you. I would not get past that first slice of bread. I would be vomiting and have diarrhea within 30 minutes and it would continue for hours and I would feel like I was hit by a truck for days. My functional medicine doctor told me to stop taking Calcium and to significantly up my Vitamin D, add K2, lots of Magnesium, some boron and collagen...
  12. DebJ14
    We are off next week on our 9th RCCL cruise since our diagnoses. I send an email to special_needs@rccl.com before every cruise letting them know that I am both dairy and gluten free and my husband is gluten free. Unfortunately, with the new menus they introduced in 2023, they removed the gluten-free designation from each item on the menu. Instead of having...
  13. DebJ14
    My iron was not low, but my B-12 levels were extremely low. I had zero energy. I had micronutrient testing and I was put on a boatload of supplements. Everything recovered pretty quickly except for my D, B12 and antioxidant levels. The doctor ordered genetic testing and found that I have a genetic inability to process all three. Thus, my dosages were...
  14. DebJ14
    They will have to put him back on gluten in order to get accurate tests results, so all the progress may be lost for a while. My grandson was 2 1/2 years old when he, his father, and his mother, were diagnosed. He was not even on the chart for height or weight and had not been on the chart since he was 12 months old. The first month he went gluten...
  15. DebJ14
    This would be wonderful. I suffered from those horrible mouth ulcers until I was finally diagnosed at 54. I had one that day, and it was the last one I ever had. The inside of my mouth is covered with scars from those painful ulcers. At my first dental appointment after I went gluten free the dentist remarked that it was the first time in the 25 years...
  16. DebJ14
    If your son does go completely gluten free, then he will find that occasional consumption of gluten will result in a stronger reaction. The longer you are off of it, the worse the reaction. When I was first diagnosed I would break out in a rash or get a headache if I consumed gluten. As time went on I would get diarrhea and vomit profusely. The time between...
  17. DebJ14
    YES! I had the Spectracell test for micronutrients and take targeted supplements in specific doses as recommended by our Board Certified Nutritionist.
  18. DebJ14
    Nobody told me about the high dose Thiamine, but when my husband was injured he was put on it, so I started taking it too. I definitely saw improvement. At this point my biggest concern is my right foot/ankle. Tendon tears have taken a toll. My Achilles did not rupture, but had multiple small tears. I underwent laser and ultrasound therapy to help heal...
  19. DebJ14
    I too have had horrible joint pain and swelling as well as chronic tendinitis. A good diagnostician reviewed all my medical records and realized that it all started back in 1987 after a course of Cipro for a sinus infection. He also linked subsequent severe flare ups in my ankle, shoulder, and elbow to repeat prescriptions. I was floxxed! My poor...
  20. DebJ14
    This is concerning. Not only do you have a higher risk of miscarriage, but you also have a much higher chance of having a low birth weight baby. If you are not absorbing nutrition because of celiac disease, then neither is your baby. And, if you continue down this path your breast milk may not be as nutritious as it should be either. I had 2 miscarriages...
  21. DebJ14
    When I had my worst outbreaks of dermatitis herpetiformis it was on my upper arms from elbow to shoulder. I never wore sleeveless or short sleeves to school, even in hot weather. I always had to have at least a 3/4 sleeve cotton shirt under my sweaters to keep the weeping blisters from leaking through the sweater. A few years later I had a weird bout...
  22. DebJ14
    Our son who has Celiac had the bloating, distension and pain. The gastro told him to take Prilosec. When he stopped after the 14 day course, it came roaring back. He went to a different gastro and was advised that is problem was not enough stomach acid, which the Prilosec made worse. He takes Betaine HCL at each meal. It took a while to calibrate the...
  23. DebJ14
    I split my Mg dose daily. I take the Mg Glycinate in the morning and Triple Source in the evening. I also found that I slept better following that plan. Also, the Glycinate did nothing to stop leg cramps. Haven't had one since I switched to the Triple Source at night.
  24. DebJ14
    Thankfully, everyone in my family respects my diagnosis and agreed to go gluten free when I was diagnosed. When the doctor told them they needed to be tested too, they complied, even my hubby. My husband and one son have NSGS and our other son, his sons and his wife all have celiac disease. Our households do not permit anyone to bring anything with...
  25. DebJ14
    I just looked up Vaginitis in the textbook Recognizing Celiac Disease: Signs, Symptoms, Associated Disorders & Complications. On page 231 they discuss Vaginitis. The book says it is frequently associated with celiac disease in females and that it results from nutritional deficiencies that cause a lack of tissue integrity which include Folic Acid, Niacin...
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