Jump to content

IrishHeart

Advanced Members
 View Profile  See their activity

  • Posts

    8,974

  • Joined

  • Last visited

  • Days Won

    152

 Content Type 

Profiles

Forums

Events

Blogs

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

Everything posted by IrishHeart

  1. IrishHeart
    Josh, You seem unbending on the fact that many people test negative for celiac on blood panels. You said this small percentile of people is somehow "freakish" or they have something strange going on" (your words). Furthermore, by using such phrases as "in the real world"...you suggest something I find rather offensive. And there is no need to be condescending...
  2. IrishHeart
    Looks like they have closed down their website? look here Open Original Shared Link
  3. IrishHeart
    WHOA!! I take great exception to your remarks here. I do not think that those of us who tested negative on celiac blood tests are "FREAK CASES" or there is something "very strange" about the people taking the test and that is why they got a negative result. Do you understand what IgA deficiency is? Do you know how many people test falsely negative...
  4. IrishHeart
    Allergy testing will not show a "gluten allergy" as there is no such thing. It may show a wheat allergy, however--as some people are both allergic to wheat and have gluten intolerance/sensitivity. It is entirely possible that her seasonal/environmental/food intolerances and allergies could resolve if gluten is causing the inflammatory response in her...
  5. IrishHeart
    oh, they do tell you what the genetic markers are--not just DQ2 and DQ8! But their hands are tied! They can only provide CELIAC DISEASE test result interpretation based on what is the CURRENT accepted medical knowledge of the "celiac genes" --which are the DQ2 and DQ8. Until that changes, and more genes are proven/accepted to be indicators of celiac,...
  6. IrishHeart
    This is what I am trying to explain, hon. I think most labs (I know Enterolab does anyway) interpret genetic results for CELIAC DISEASE as positive in the presence of HLA-DQ2 and DQ8...any other sub-type gets a "gluten sensitive" label...or is if it is 2,2 it is labeled as "rare" for celiac. (I must be "special" then.. ) Yet, many of us with DIAGNOSED...
  7. IrishHeart
    Actually, I think that genetic screening --as it stands NOW-is actually NOT very useful for excluding celiac disease--because they DO NOT recognize universally that other genes are at play. The doctor says ..nope, no DQ2 or DQ8, you CANNOT POSSIBLY have celiac disease. This is absolutely false!!!! Until the data proves/states that other genes are factors...
  8. IrishHeart
    The study was not conducted to determine what other genes are involved in celiac disease. That was not the purpose of the study. The study was to show that some diagnosed celiac patients do not have the "alleged celiac genes" of DQ2 and DQ8. That's all! They did the study, gave the stats and drew a reasonable conclusion--that 8.3% do not have these...
  9. IrishHeart
    Actually, I believe the study supports what we are discussing.....if you read it carefully, the conclusion of the study is... "Using HLA DQ2.5 or DQ8 negativity to exclude celiac disease is unreliable as a relatively high proportion (8.3%) of the celiac disease patients does not carry this heterodimer." Which means--that in this study of DIAGNOSED CELIACS...
  10. IrishHeart
    Thanks so much for this posting, Nora!! I have searched for NEW information on genetic testing and have come up empty. I have DQ 2,2 and it is considered --granted, now, I am quoting from the lab test results I received--"rarely associated with celiac disease"--about 2%. Looks as if this number is much larger than previously thought. We have a long...
  11. IrishHeart
    That's just a shame ...for her to disregard POSITIVE test results based on one guy's opinion. I am sorry to hear this--- as I imagine it is very difficult for you to keep silent. Perhaps, one day, she will see the light. I am going through similar issues with my sister. Total refusal to even consider testing --and clearly, she is as much a celiac as I...
  12. IrishHeart
    Why, thank you, Irish D...I will take a look at it. Cheers, Irish H
  13. IrishHeart
    OMG, raven.... How on earth does a doctor make such a statement? A positive blood test and biopsy....aren't they considered the "the gold standard" by this archaic medical profession we have in this country? Certainly she knows she has celiac nonetheless, yes?
  14. IrishHeart
    Enterolab (among others) does Genetic testing and sends you a report via email. Visit their website for info. It's a simple cheek swab. I think they are the least expensive --when we were looking into it in our family. The report is useful if you have tested NEG on celiac blood panels or if you choose not to ingest gluten again for a biospy or if you have...
  15. IrishHeart
    REALLY?? that IS indeed very interesting, Irish D...I have never heard of that as an indicator of celiac. Can you tell me where you read this? I have "short" pinky fingers myself....cheers, Irish H To JOSH---I do not think your hands look "peculiar" in any way, hon. They look like a pianist's hands. My index fingers curve slightly inward as well...
  16. IrishHeart
    Cannot add much more to the discussion---Gemini has covered it all so well ---but I would like to add that EVERY SINGLE company I have ever contacted, via email or phone, has been cooperative, informative and quick to reply. Whether it was about a medication or a deli item or topical lotion, I have received a courteous response and sometimes, COUPONS! ...
  17. IrishHeart
    Yes, eczema and psoriasis are often listed as associated Celiac symptoms--and that makes sense, as they are both autoimmune conditions, too. Open Original Shared Link While I do not suffer from either of those, I did have rashes, blisters on my scalp and in my mouth, and acne --- and now they are gone. Certainly worth trying a gluten-free...
  18. IrishHeart
    I think it is a fairly common problem, however it is an interesting question you pose--in relationship to celiac. I had problems with both shoulders in 2003 & 2004. Blew one out rowing and the other...who the heck knows? breathing? I was swimming and fairly active, so I was surprised when it happened. One required surgery for bone spurs...
  19. IrishHeart
    That's because great minds think alike, dear "shroom"....
  20. IrishHeart
    I was thinking that as more athletes--or maybe a few "famous people" who get press -- are diagnosed perhaps the sarcasm and cynicism will die down. Does anyone else think it interesting that Phil Mickelson has Psoriatic Arthritis and Venus Williams has Sjogren's and other assorted health issues??(sure hope they tested those two for celiac disease because...
  21. IrishHeart
    If you have the genes and your blood test was positive and you have resolution of symptoms with a gluten-free diet, you have Celiac. What's the debate about? You need your own strainer and you need family support. You are being CCed otherwise. And if YOU have the genes, THEY have them too!....it came from somewhere...that's why it is called an...
  22. IrishHeart
    These may be temporary food intolerances, secondary to Celiac. It is best to avoid them for a while and try adding them back in--one at a time . My doctor has suggested staying off dairy, especially, for "as long as I can stand it" LOL I have tried having cheese and I bloat right up, get the big C, feel awful and my already horrible joint pain increases...
  23. IrishHeart
    "DeNial"....not just a river in Egypt .....sadly, it will take someone to get as crippled and sick as I was to pay attention to their symptoms more closely. Gluten is often the culprit in these inflammatory conditions.I have tried and tried to get my family and friends to listen --to no avail. Gets tiring, doesn't it? I quit. When they get sick enough, I...
  24. IrishHeart
    You are an awesome sister!! My GI says Celiac and Crohn's often go hand-in-hand (ANY autoimmune disease should make a "good" GI doctor suspect Celiac --but unfortunately, they do not) and he tested me right away for Crohn's once I mentioned I had a cousin with it. She may want to consider testing --(or at least going gluten-free) to not only relieve...
  25. IrishHeart
    I hear you, sweetie and agree totally! My Gracie was my baby. I still miss her being underfoot. Still look for her sometimes....it's been over 7 years! She was "up my butt" even though she had almost 7 acres she could have run around on. A real lover---everyone loved my Gracie Girl. A 75 lb. doofus of a black lab who thought she was a Lap dog....I got...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.