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About GretaJane

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    Health, nutrition, environment, parenting, celiac disease, breastfeeding, art, snowboarding.
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  1. The blood tests and labs are not always perfect. You could get a biopsy if you want to see if there is damage. I have heard of many people testing neg on bloods and positive on biopsy.
  2. Do the endoscopy now, before she goes gluten-free. She will need this for a "gold standard" diagnosis. This is very important for her long term adherence to the diet and so other people believe you and take you seriously. It may not be a big deal today if you have total control over what she is exposed to, but she will be out in the world. Other people will treat it as a diet fad, instead of a serious disease. This will cause her damage. You will need the diagnosis for a 504 plan at school, so they can buy gluten-free art supplies and make other accommodations. You will need the diagnosis, 90% sure leaves room for questions down the road and makes it super hard to be 100% vigilant about cross contamination FOR LIFE. I can't express enough how how easy it is to cut corners when you are only 90% sure. Something in the head says, well, i don't know for sure, so i guess i can let it slide. You will need the diagnosis so you have the confidence to always advocate on her behalf and so that she will for herself. You don't want her to become an adolescent and think mom was just being overprotective, paranoid, brush off what YOU say (rebel). Its easier to follow doctors orders. You will face family and friends who will brush your requests off without an official medical diagnosis by a doctor. This is a difficult path. The endo is not a big deal. You LO will go to sleep and it will be done in a few minutes.
  3. Absolutely, my son reacted to my breast milk when I ingested gluten. No doubt about it. none. As a vegetarian, I was a heavy gluten eater during my pregnancy and postpartum to try to get enough protein (gluten protein). As a small baby, he was exclusively breastfed, had chronic diarrhea and vomiting and terrible colic, until his pediatrician told me to do an elimination diet. She had me eliminate dairy first, no change; then soy, no change; then gluten - and everything stopped - he turned into a much happier baby. Every single time I tested it or made a mistake, hours later he nursed and then had explosive D and/or V. He was breastfed until he was 3.5 years old, so there were many occurrences. He still reacts with the same symptoms to any trace of gluten in his diet.
  4. Playdoh? Could it be medicines, vitamins or supplements? They can contain gluten as a filler. Could she be anemic? Maybe try going grain free for a whileto see if that helps. Most grains that are naturally gluten-free often contain cc gluten that can affect people. A naturopath could help get a blood test to look for food intolerances. Good luck!
  5. Have you looked into PCOS? That can make you gain belly fat there! I have friends who got really big bellies even though they were skinny and it turned out to be the polycystic overy syndrome. Other signs of that include extra body hair on belly (sometimes even dark upper lip hair or other facial hair). You might have celiac, or non celiac gluten intolerance. That can cause depression, bellyaches, acne and bloating (it did for me). Never hurts to get tested! I am proud of you for getting help with your ED! Love your body and every little imperfection that is. Keep up posted
  6. If you push for a biopsy now, your intestines will likely still be damaged enough to be diagnosed celiac - regardless if you are eating gluten or not. It can take months or longer for adults to heal who have had it for a long time. The blood test would be negative, unless you are eating gluten. The gene tests can only tell you if its possible for you to have it. It can rule it out, but not confirm it, most of the time.
  7. Those at risk should be retested every 2-3 years, or if any symptoms or signs manifest. The celiac gene(s) can turn at any time in life and they do not turn off. You may want to have your son's DGP levels tested. Get your daughter a 504 plan for school.
  8. GretaJane

    Can Dh Be Mistaken For Hives?

    Yes, rarely, DH can present as chronic hives!!!
  9. Cross contamination!!!! At Starbucks they use the same mini vacuum for the pastry display as they use for the coffee grinder! It deposits crumbs into the coffee grinder and then into your coffee! This can happen anywhere.
  10. I would not entirely dismiss enterolab results. they may not be proven, but they are not disproven either. I recommend appropriate testing before going gluten free, so you can get an official diagnosis for appropriate care and follow-up. See guidelines below: Posted by Living Without editor Alicia Woodward at 03:04PM in blog - Comments: (0) August 28, 2013 The American College of Gastroenterology released its first clinical guidelines to help doctors diagnose and manage their patients who have celiac disease. Dr. David A. Johnson, chief of gastroenterology at Eastern Virginia Medical School in Norfolk, Virginia, commented extensively online about the guidelines. His advice to his fellow physicians: “Beyond a little bloating and diarrhea, think outside the box. Celiac disease is grossly under-diagnosed, and we can all do better.” Dr. Johnson provides the following synopsis of the ACG’s guidelines on celiac disease, suggesting that his medical colleagues take away these important points: 1. Antigliadin antibody testing is no longer part of celiac screening. It should not be part of a doctor’s diagnostic testing for celiac disease. 2. IgA TTG testing should now be used - but NOT for patients who are IgA-deficient. 3. In patients who are IgA-deficient, doctors need to consider other testing, such as the DGP or the IgG TTG antibody. These test strategies are available in commercial laboratories. 4. Test results (blood tests and biopsy) can be misleading if the patient has been on a gluten-free diet. For these people, genetic testing and a gluten challenge are most helpful. 5. Genetic testing (HLA-DQ2 and HLA-DQ8) is helpful in select circumstances. If the patient is HLA-DQ2 and HLA-DQ8 negative, doctos can exclude the diagnosis of celiac disease. 6. Celiac disease has a high (10%) prevalence in Down syndrome. If a patient with Down syndrome is HLA-DQ2/8 negative, doctors can dismiss the diagnosis of celiac disease. 7. When doing a diagnostic endoscopy, multiple biopsies are key to diagnosis. Doctors should now biopsy the duodenal bulb, in addition to 4 or more biopsies from the second and third portions of the duodenum. 8. In some patients, abnormal liver enzymes may be the only manifestation of celiac disease apparent on routine testing. These patients are typically very responsive to a gluten-free diet (95 percent will resolve). 9. Doctors should involve a dietitian. Celiac patients need lifelong monitoring for vitamin and micronutrient deficiencies (iron, vitamin B12, vitamin D, folate, vitamin B6, and a variety of other micronutrients, such as copper, zinc and carnitine). Source: Celiac Disease: New Guidelines for Diagnosis and Management. Medscape. David A. Johnson, MD. August 21, 2013. good luck!!!!!!!
  11. Get your iron levels checked! My son was itchy when he was anemic. Also cc makes him itchy. Zyrtec helps. Make sure any vitamins, supplements, or meds are gluten-free.
  12. GretaJane

    My Son Needs Help.....

    His attitude is okay. You need to be more mindful of cross contamination (its a steep learning curve). Gluten free pizza made in a gluten facility is NOT safe for celiac. Flour dust is suspended in air for 24-48 hours contaminating everything. There is a lot to learn (for everyone involved) and it is overwhelming and he can't be too careful - or he will end up sick. He may be afraid to eat and rightfully so! Some people start with gluten-free nutritional supplement shakes. He may need a 504 plan at school to protect him. Your kitchen and pots and pans, cutting boards, utensils could be making him sick. He needs new dedicated wood and plastic, as gluten ones are contaminated because they are porous. Stainless steel and glass are okay. You need to stop using any gluten flour or dry flour product mixes in your kitchen. He needs his own new gluten-free toaster. Let him browse amazon for a paleo cookbook to pick out. The are some for kids. Paleo is the way to go, especially in the beginning while healing because most grains have a little bit of cc. He is going to have to start learning how to prepare gluten-free foods for himself. So he should be encouraged and supported to try to make some recipes from a paleo cookbook. As he heals his depression should lift. I was able to get off all antidepressants after going gluten-free. Never felt so emotionally stable in my whole life. Give him time and ask him what he wants. Best wishes! Greta
  13. GretaJane

    So, When Do The Symptoms Stop?

    You might have bacterial overgrowth. You can get tested for that. Eat more probiotics and try cutting out all grains for a while. They all contain a little bit of cc.
  14. GretaJane

    Is Bleeding A Thing?

    Vitamin K deficiency causes nosebleeds because its needed for clotting. Take a supplement and eat your dark leafy greens!
  15. GretaJane

    Lactose Intolerant Or Dairy?

    Drink a big glass of lactose free milk and wait an hour or two to see if you get any symptoms. If not, lactose is the problem.