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DebJ14

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

Everything posted by DebJ14

  1. 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...
  2. 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...
  3. YES! I had the Spectracell test for micronutrients and take targeted supplements in specific doses as recommended by our Board Certified Nutritionist.
  4. 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...
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. 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.
  10. 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...
  11. 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...
  12. We were lucky that our grandchildren were diagnosed young. Our oldest grandchild was 3 when diagnosed. He had never to that point even been on the growth chart. He grew 2 inches and gained 6 pounds the first month he went gluten free and within his first 6 months he actually made it onto the growth chart. His little brother was 7 months old when he was...
  13. Mexican food is my go to when eating out. Just make sure the tortillas and chips are 100% corn. The beans may or may not be gluten-free. I buy gluten-free Charro beans at my local supermarket. And rice is usually OK. Sounds like your family needs to put some work into learning exactly which foods contain gluten and those that normally do not. We vacation...
  14. I had the gut symptoms, but got that ridiculous diagnosis of irritable bowel. Once that was on the record all the gastroenterologists I saw afterward never went further to find the cause. I was one of the people with constipation, not diarrhea. My doctor swore it could not be celiac. My biggest issues were neurological including ataxia and debilitating...
  15. Our household has been 100% Gluten free since the day I was diagnosed. At the time my husband and son did not yet know that they also needed to be gluten-free, but they were willing to have a gluten-free household to support me. They watched me struggle with my health and knew how important going gluten-free was for me. Their results came back a few days...
  16. My nutritionist recommended the Thorne B 12 Complex. It has the extra B 12 plus the other necessary B vitamins.
  17. Just be very wary. The year I was newly diagnosed I planned an elaborate gluten-free Thanksgiving dinner. I made gluten-free stuffing and gluten-free pumpkin pie with coconut milk (since I knew I had a problem with dairy too) and homemade cranberry sauce etc. I cooked like a fiend the day before Thanksgiving and tasted as I went, but on Thanksgiving morning...
  18. It is very possible to have multiple things going on at once. I was diagnosed with DH as a teen. Every year when school started this horrible itchy, blistery rash appeared on my arms. The blisters would break and it would crust over. Looking back I can see how I did it to myself. My parents gave me $1.00 for lunch every day. I spent 10 cents on an Italian...
  19. I would amend that advice to Go Gluten Free and see a Board Certified Nutritionist, not a dietician. They can order the proper nutritional testing that a dietician knows nothing about. Then, based on those results can put you on a supplementation plan. You will need to retest about every 6 months to make sure the supplements are having the desired effect...
  20. All I know is that I have 2 sons, and one has Celiac and the other gets just as debilitated by NSGS. The son who has Celiac Disease is married to a woman who also has it. Both of their sons have Celiac Disease. My husband has NSGS. It sure makes getting together for the holidays easy since everyone is Gluten Free.
  21. I have been having testing for nutritional deficiencies done for 16 years. Everything is good except for D, B12 and my antioxidant function. When they did not resolve to the doctor's satisfaction, he ordered genetic testing. I have mutations that impact those levels. I am on a wide range of vitamins and minerals and take Bentofiamine and B12 as well as...
  22. It is especially frustrating after finding a letter from the dermatologist in my parent's papers after their death, that stated my biopsy was positive for Dermatitis Herpetiformis. The biopsy was done on my arm when I was a teenager. I had a blistering, weepy, itchy rash on my arms, so even in the hot summers I kept them covered. The letter had a reference...
  23. I was diagnosed with Ataxia. We jokingly call it "My Tilt." I could not walk down a sidewalk without falling off the curb into the gutter. Someone always goes with me to walk on the outside, so I do not fall over. I would never in a million years pass a roadside sobriety test because I cannot walk a straight line and my balance is horrible. I did improve...
  24. OMG! This article could have been written about me, although I went through 2 miscarriages and 2 pregnancies long before I was diagnosed. My first pregnancy was a disaster. I was dizzy and tired the entire time, so I had to quit my job. My Blood Pressure started to climb at about 6 months. I was put on phenobarbitol, but it did not lower the BP 1 point...
  25. This line hit home for me. After I was diagnosed my sons were tested. One has Celiac Disease and the other just NCGS, but very, very sensitive. The doctor suggested the my son's wife be tested too. She assured everyone that she was fine, but the doctor said she had many of the extra-intestinal symptom. She refused testing for nearly a year. She...
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