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pikakegirl

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

Everything posted by pikakegirl

  1. pikakegirl
    Ten years gluten-free and clean tests every 6 mo. but developed neuritis about a month into the diet. Granted pre diagnosis i had muscle pain so bad for 15 yrs i was told i had fibromyalgia. That stopped and the nerve pain began as soon as gluten-free diet started. Have had slight elevated centrimere but not enough to say sclerederma. Dr found i have one...
  2. pikakegirl
    Grief is natural and something we have to get through and it was a few years for me. First i just stopped seeing fast food joints. To me they were empty lots. I stopped watching tv with commercials. Thank you Roku, Netflix, Amazon and HBO. Those helped. Dietitian didnt give me anything i didnt know. Read some Celiac and Nutrition books. Things got easier...
  3. pikakegirl
    Have you been to an allergist for wheat or gluten allergy? Even a family dr can order a blood test. I have more food intollernces now that i am gluten free. More so things i ate with gluten pre diagnosis.
  4. pikakegirl
    I would tell myself to get a vitamin panel done. To search gluten free on Amazon. That I am going to be healthier than most because i am cutting out processed foods and restaurants forever. To be my own advocate and best friend because doctors know little about Celiac and they will suggest things that could expose me to gluten. That my dilligent research...
  5. pikakegirl
    Very glad you survived. My father did not. He must have been celiac because i did not get the gene from my mother. I am 50 and when diagnosed saw a cardiologist. I had mild arterial sclerosis. After changing my diet i have no signs of it on sonogram. Thanks for putting the information on the sight. The fact that uncontrolled celiac does mutisystemic damage...
  6. pikakegirl
    Before diagniosis and gluten-free i could eat almost anything. Now i eat exactly like you. Found it is a common thing. Some theorize your body remembers what you ate with gluten. Other things are just leaky gut problems. I recently read that mushrooms and strawberries are grown in beds of rye or wheat to keep them warm so no wonder i have problems with them...
  7. pikakegirl
    Start with the blood tests for celiac. Ten days gluten free would not necessarily show improvement. I am silent celiac so i did not have weight loss or diahreaha. However i had anxiety, thyroid and many strange symptoms. Do not be so hard on yourself about being proactive with symptoms. I spent 20 years looking hypocondriac with drs and friends. I complained...
  8. pikakegirl
    Have been diagnosed for 10 yrs. Only certain foods or vitamin supplements have caused this. Spices in foods, citric or ascorbic acids, vitamins. Try eliminating things. How about yeast infection? Have you tried an antifungal cream?
  9. pikakegirl
    I was 230lbs when diagnosed and in a panic to find gluten free i ate candy bars and spam. I lost 70lbs the first year. Must have been alot of water from inflamation. As i researched nutrition i began to eat organic and cut out all sugars, corn syrup, brown rice syrup. I lost another 20lbs. I was 130lbs my high school weight. When surgical menopause hit me...
  10. pikakegirl
    When researching my panic attacks pre gluten-free I read a bit about the Vegus nerve and the GI system. So connected that what happens in the gut can manifest to many types of anxiety, ocd, neurological and psychological conditions.
  11. pikakegirl
    I use Vanicream sunscreen spf30 fragrance free but it is thick. Have also used Shiseido spf50 fragrance free for sensitive skin which is lite but expensive.
  12. pikakegirl
    I have silent Celiac confirmed blood and 3 biopsy. New Drs still question it because my bones are fine. No nausea or gi symptoms. No anemia. Hence silent. The damage was visible on the endoscope and i saw the video of pink turning to grey desert about 2 feet into my upper gi in the recovery room. My Dr. Said in recovery, you have Celiac you can never eat...
  13. pikakegirl
    Yes, tried enzymes but made my stomach burn terribly. I no longer have my gallbladder. Possibly the issue.
  14. pikakegirl
    I thought i was lactose intollerant until i tried 0% fat greek Oikos. It was the fat causing all my symptoms. Of course it is gluten-free.
  15. pikakegirl
    I developed. A sharp pain like you describe but have been gluten free negative blood for 10 yrs. Had colonoscopy and sonogram of appendix with nothing abnormal. It stopped when i eliminated citric and ascorbic acid foids and addituves. No phycisian knows why i have this so no clinical name. Ii seemed gi because gas and bm made it sharper but i suspect it...
  16. pikakegirl
    This article seems to understate the consequences of untreated Celiac. I lost a parent to heart failure from complications of undiagnosed Celiac. It may be a slow killer but a killer nonetheless. Also I did not have most of these symptoms. Instead I had obesity, high CRP, kidney stones, malnutrition, arterial sclerosis as well as adrenal fatigue and neuromuscular...
  17. pikakegirl
    Been gluten-free for 10 yrs and no sign of being glutened on bi annual bloiwork. That being said 2 yrs ago i had sudden sharp pain in lower right abdomen. Treated for bladder infection but urine was barely or not positive. So bad could not sleep well. Worse if gas or fecal in that area. Ended up in er. Checked apendix. Normal. Had a colonoscopy. Normal. Pill...
  18. pikakegirl
    Maltodextrin causes severe gi cramping in me as does any synthetic sugar substitute. Life extension, NOW and Solgar on Amazon have less other ingredients and are gluten free. I love the Life Extension l-methylfolate which is already converted folic acid for easy absorption. I take 3000mg for nerve pain. It has a great mood lifting benefit as well. See NIH...
  19. pikakegirl
    I buy many dried gluten free goods like noodles, crackers and dried fruit in bulk on Amazon since the prices beat the brick and morter grocery. Also found nut butters, honey and teas. Just search gluten free.
  20. pikakegirl
    Really relate to your struggle. When diagnosed i thought wow something i can control to stop all the fatigue and pain from CFS and fibromyalgia diagnosis. I am better in so many ways from all the symptoms of malnutrition, fatigue and sinus allergy manifestations but my neuromuscular pain is diffrrent and more debilitating. I thoerise that going gluten free...
  21. pikakegirl
    I took levsin when things were the worst however it constipates. Found that a 10 food elimination diet stoped the pain and a food diary showed me all my intollerences which can get better over time. Reflexology of the feet and hands is a gentle and effective pain reliever. Worked for my cramps and nausea.
  22. pikakegirl
    On the onion intollerence. Yes when i eat them i sweat them out immediately and become itchy all over. One dr said they were sulferic. I ate alot of onions, garlic and olive oil with gluten pasta before i was diagnosed. To this day things i ate with gluten are intollerent for me. After 10 years i have been able to expand my diet from my elimination diet but...
  23. pikakegirl
    So happy for you. I had very bad 1 time a week bm and sane advice. Drs also put me on antidepressants , antipstchotics and benzidiazepines. They neither work or made me physically dependant. Now i am only on thyroid supplement and vitamins. I as diagnosed at 39. If you have any problems getting off meds read The Ashtin manuel regarding 30 years research on...
  24. pikakegirl
    So sorry you are having physician trouble. I did have 3 positive biopsies but still get the "are you sure you have Celiac?" from drs. They have never been of help to me except ordering my Iga, Igg, crp, ana and vitamin panels. All of which i have to list and ask for yearly. I just keep changjng drs until i find a compliant one. None of them research or understand...
  25. pikakegirl
    Oops. Thanks GFunDC for saying what i meant. I should have typed gluten free food products are no guaranteed 100% gluten-free since up to 20ppm are allowed by law. I am silent celiac so i can not rely on symptoms to telk me i messed up. Therefore i am super careful to the point of never eating out or eating food i didnt prepare myself. Has worked great over...
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