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fedora

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

Everything posted by fedora

  1. fedora
    sandpiper, I am curious about the melanoma - celiac connection. my grandmother who has has every symptom that I have(don't know about joint pain) has had melanoma for 12 years. I just told the dermatologist about her. He thought the drs. must of got it early enough. I said, no, she still has it. He though I must be mistaken. I am not. She has coexisted...
  2. fedora
    hi. I would get a copy of the blood work you had done and post it on here. Sometimes Drs say no she doesn't have celiac but the tests could have some elavated markers. Also the blood tests are not 100% effective at showing positive. she could still have it or just be gluten intolerant. Even if someone has not progressed to celiac disease, they can still...
  3. fedora
    Thanks for the responses. I have decided to take her in for the blood work, then go gluten free. I was able to get an appointment tomorrow afternoon. The nurse I talked to suggested starting with blood allergy testing. I told her they are not the same. She said grain allergies could show up. I said they were a different antibody than celiac antibodies...
  4. fedora
    I have decided to take daughter in. I talked to the nurse on the phone. She said they could start off with blood allergy testing. I said celiac won't show on that, it is different types of antibody reaction. She said it would show grain allergies. I said they aren't the same thing. I am just going to stand my ground and force them to the the celiac...
  5. fedora
    I don't react to touching small amounts of gluteny food. I do have a wheat allergy on top of gluten intolerane. Wheat eaten(not other glutens) causes me rashes. I accidentally bought a shampoo with wheat protein in it. My scalp itched like mad!!!!!!!! woke me up at night and almost drove me crazy. I just used it a few times. I do itch alot though...
  6. fedora
    the farmer's market in hilo is fabulous. It is in the downtown area on wednesday and saturday. We (all five of us) at from this vietnamese's ladies booth for $10. the fruit was great. There was fresh AhiAhi there that I took home and cooked. On the way from volcano to Hilo there is a health food store in the town of Kea'au. It is about 10 minutes...
  7. fedora
    I have been off gluten for a little over 2 months, but have had a wheat allergy for 5 years prior. I went off gluten before I read up on all the tests. By then I knew it was a huge part of my problem and would never eat it again for any reason. I sent in my sample that showed gluten intolerance, casein intolerance, and a DQ2 gene. My son and daughter...
  8. fedora
    hi, being related to a celiac ups your odds of having celiac also. The closer the relative the more chance. I can't remember the odds for sure, but I think it is 1 in 22 if you have a first degree relative with celiac. Celiac and other auto immune diseases can overlap. When you said he already has other medical issues and I want to get it taken care...
  9. fedora
    Oh my gosh. Really. That is great!!!I am glad you have found your main issue. I hope it completely resolves for you. I would be so afraid to try gluten again. You are so brave. Interesting, you are on the gluten free forum, but you must have so many friends here. I don't know if I will be as lucky with the gluten, my dad and grandma both have severe...
  10. fedora
    Hi Carla, Thank for responding I did go back and read the first few pages. I had read the first one already. I have over 20 of the symptoms, but I am doing so much better gluten free. Some of my symptoms have completely disappeared others are new and some are much better. But I still don't feel well, but have had the flu and had it in the...
  11. fedora
    Hey, this thread is so long...no way can I read it all! I live in the woods. My daughter who just turned seven last week had Lymes in 2002 at age one. The good news is I KNEW it before any symptoms occured. Thank Goddess she got the typical bullseye rash about 2 weeks after getting bitten by a tick. I was watching her. She tested positive and...
  12. fedora
    I hope things get better for you, You are not cursed. You are blessed to have found the cause of your ailments so young!!! I hope your mom gets more stable, but if not, it is not your fault. Itchy girl, I so relate...beside I am an itchy girl too!!!We are red headed scottish. My grandmother is mentally ill and my whole family thinks she is crazy...
  13. fedora
    Hi. You have one copy of the DQ8 gene. It came from ONE of your parents. The only way to know for sure which one is to have both of them DNA tested. Your children may or may not have gotten the DQ8 from you. Most celiacs have the DQ2 gene, but most celiacs are not underweight(according to statistics). This is a outdated stereotype. Some are underweight...
  14. fedora
    I am sorry for all your problems in school. I hope it gets better soon. In school, I missed soooooo many days. The school let it slide because I made good grades. I was sick a lot too. My problems got worse in college. I just could not commit. I dropped out so many time and never finished a year of classes. I know now I wasn't just a loser after...
  15. fedora
    DQB1*0201 (*0201) is in strong linkage disequilibrium with HLA-DQA1*0501 and HLA-DRB1*03, therefore, *0201 is almost always found in the DQ2.5 (A1:B1) genetically defined haplotype, or the DR3-DQ2 (DR-DQ) serologically defined haplotype. This beta chain allele shares stongest genetic linkage to coeliac disease, the beta chain product is one of three DQ beta...
  16. fedora
    none of the genetic tests are totally accurate. There ARE other factors involved in celiac that are still being researched. I have found quit a few scientific articles discussing celiac and genes. About the alleles: Although DQa05,01,b02,01 on one gene is the definate DQ2 gene. b02,02 from one gene can join up with a05,01 from the other gene and form...
  17. fedora
    Yes this is definately a symptom Pain during the daytime is recognized by the medical establishment as NOT being growing pains. I started having joint pain at 10. It got so bad that at 12 I could not walk around the mall once. It subsided for no known reason until 20. At 20 my shoulder started hurting. My knee started hurting at 28. Now at 32 I...
  18. fedora
    yolo, ugh. doctors can be annoying. I agree that symptoms can go underground. Mine changed. I had D, vomitting, joint pain, mood problems. There were times I was so sick I thought I might die. The doctors told my mom and I that I had growing pains and the stomach bug. My mom tried to take me to an endocronologist, but none of them would see me since...
  19. fedora
    Hi lisa, first, I am sorry for your suffering. Sadly, many of us understand. I am 32 and have had symptoms for 22 years!!! I luckily had some better years in there. I also had some hellish years. I was just totally dismissed by doctors as a kid. oh well. I choose now for this to be a part of my life, something meant to be there for others to learn...
  20. fedora
    It sounds like you could almost definately have celiac When given a biopsy to look for Celiac disease, they look for damaged villi. You have had a biopsy showing flattened villi. That is the "gold standard" of diagnosing celiac. Can you get your old biopsy report to your new GI. It would seem like that would be enough. Blood tests can definately be...
  21. fedora
    Hi, I just spent a lot of time researching gene info on celiac disease. I am really into science. I will do my best to explain what I have figured out. We get 2 genes on each gene site. One from our mom and one from our dad. These genes contain the HLA proteins. When they do DNA testing for celiac they look at a specfic chromosome. On this chromosome...
  22. fedora

    ARCHIVED Dairy

    fedora replied to Mr. Pep'r's topic in Food Intolerance & Leaky Gut

    I have been having dairy questions also. I got my enterolab test results back last monday. Fecal anti-casein (cow's milk) IgA antibody 26 Units (Normal Range <10 Units) I have only noticed problems with lots of cheese. But I realized it could be damaging me without me knowing. Someone on here said that casein and gluten are similar on a molecular...
  23. fedora
    Hi, Thanks for the reply. Anyone else????? Has anyone had a positive biopsy after they stopped eating gluten? Anyone else just have a rash on their hands that had a positive biopsy?
  24. fedora
    This happens to me too. BUT it hasn't happened once since not eating gluten!!!! There were episodes it was so bad my eye barely would stay open too.
  25. fedora
    Hey collette, Good luck. We eat soybeans cooked in a pressure cooker or cooked for many hours on the stove. But I know beans are still hard for some. Also edemame are so yummy!!! I also like plain tempeh and then season it myself. Or just basic tofu. But I think Brian's idea is good with just the plain soy first. Cheese is definately harder...
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