Jump to content

jayhawkmom

Advanced Members
 View Profile  See their activity

  • Posts

    679

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by jayhawkmom

  1. jayhawkmom
    I do agree with that... totally. However, when the child is 4 - they really have no clue about party invitations, venues, etc. And, if they miss it... they don't realize it, nor do they care. When they are 10, it's a whole different ballgame. =) Even still, my daughter is approaching her 7th birthday. CEC would still be off limits, as it's just too dirty...
  2. jayhawkmom
    Personally, I would not take my child. 1. There is pretty much nothing to eat. 2. There are handprints all over EVERYTHING.... even in the cleanest of CEC's. 3. I'd avoid it during cold/flu season just for THAT aspect, regardless of whether or not my kid could EAT there. But, that's just me. I think I'd send a gift and invite the child over...
  3. jayhawkmom
    I just got this in my email... and wanted to pass it on! Awesome!!! Open Original Shared Link
  4. jayhawkmom
    Bummer. I was really hoping I would not have to wait... another whole week. Looks like I probably will though, according to the general consensus. Amyb - I've already had the blood tests and biopsy. I already know that I'm gluten intolerant... I just want to know whether or not I have the genes. And, if so... it'll help me (hopefully) to convince some...
  5. jayhawkmom
    Really? No one??
  6. jayhawkmom
    Another interesting thing.... when I had my blood tests done, my antibody levels were highly elevated. Yet, my ALLERGIST told me that there was no way I had Celiac, and that the antibody tests were pointless. (Then....why run them?) Incidentally, my GI said that elevated antibodies indicates *something* going wrong... regardless as to whether it's true...
  7. jayhawkmom
    did you have to wait a full three weeks for your results, seriously? It's now been 2 weeks since they received my DNA. Gosh, I really can't stand waiting for testing results. Regardless of what the tests are for. SO, I'm just trying to get a general idea on how long it "really" takes. Thanks!
  8. jayhawkmom
    Yes, there are blood tests for food allergies. There are also skin tests.... the scratch test and the intradermal testing. The latter are not fun, but not really a huge deal. I've had all three different types of allergy tests. However, I've still been unsuccessful at getting my allergist to do a "full food panel" because it's extremely expensive and he...
  9. jayhawkmom
    What an interesting topic! I've always dealt with motion sickness issues. As a matter of fact, for years... my husband has thought that I was "exaggerating" until one of my uncle's told him how AWFUL it was when I was a child. I do just fine when I'm driving... and in most cases, I'm fine as a front seat passenger. But, to this day.... even gluten...
  10. jayhawkmom
    My medi-alert bracelet came from lauren's hope in Overland Park. =) It looks like Open Original Shared Link. It's actually quite heavy and the tag *always* is underneath on my wrist due to the weight. People rarely notice that it's a medic alert bracelet. While it's not Tiffany, it's pretty... and doesn't detract a lot of "unwanted" attention. =)
  11. jayhawkmom
    I recently read Gluten-Free Girl, by Shauna James Ahern, and it made me "fall in love" with food again! I love to eat. I hate being restricted. I dislike cooking... but only because I have a tiny kitchen, not any other reason. But, I really do love food. So, I try to find a way to manage. =)
  12. jayhawkmom
    My daughter and I spent the weekend at Disney World in Florida. I had heard that Disney is extremely accommodating, but now I've experienced it firsthand. I was impressed! Overall.... it was a great experience. Whenever and wherever we ate, we first spoke with either a chef or a manager, and not ONE of them were any less than 100% fully versed on food...
  13. jayhawkmom
    We started the gluten-free diet in May of 2006, following positive blood tests and an inconclusive EGD. The EGD showed duodenal ulcerations, inflammation, mucousy patches, and other "issues" but the biopsies showed no villi damage. Or... not enough for them to "offically" label her as Celiac. We were, however, told to put her on the diet, immediately. Around...
  14. jayhawkmom
    Wow. That SUCKS!!!
  15. jayhawkmom
    Uh.. yea, that can never yield a good results! LOL! I'm wondering if it was one of those "wonky" issues whereby an ingredient was changed, relabeled, but there are still some with the "old" recipe floating around. Or, maybe it was just a really weird batch where the gluten WAS present due to a manufacturer ingredient change, or something. I'm not making...
  16. jayhawkmom
    Very interesting. It's similar (in effect) to Xolair. Xolair was going to be the "saving grace" for those who are allergic to peanuts. Unfortunately, no one wants to be involved in the trials due to the fact that it's horrifically dangerous. It's going to be GREAT for asthmatics, someday... but I think I'll keep my peanut allergic daughter from thinking it...
  17. jayhawkmom
    The one I had was a normal "cream egg" with the oh-so-sickly-sweet "egg" center. I only have ONE a year, because it's something my grandma used to buy for me. I miss her... so I have one a year in her honor. =)
  18. jayhawkmom
    Odd. I ate one yesterday... and there was no wheat listed on the label. If I eat wheat, I immediately react with such itchy facial skin that I could scratch myself to bleeding. I assure ya, that didn't happen. Hmmm. Weird.
  19. jayhawkmom
    I just wanted to throw this out there for you... I've been at this for a year and 8 months. And, I still get "nervous" when I have to talk to a manager, waiter, server... whatever, and ask for a gluten free menu. In most cases, I go with the menu option that *obviously* contains no gluten, or I've familiarized myself with their "normal" menu in comparison...
  20. jayhawkmom
    It's ok!! And, yes... those of us, in the US, who are lucky enough to have a competent doctor on our sides also feel very sad and sorry for those who aren't able to find one! In the US, they are still fairly few and far between. =(
  21. jayhawkmom
    The original topic, that of the daddy who went gluten-free in support of his daughter, should be readdressed. =) But, before I do address the original post, I want to say that I was here last year when "Ralph" or whatever her name was before, started going all crazy about Dr. Savviano and the problems with soy. S/he would not let it rest. But, as my inlaws...
  22. jayhawkmom
    Perhaps since you are in the UK - there is a true "standard" that is THE standard with regards to Celiac testing??? In the US - there simply isn't one. Each lab has their own set of positive and negative criteria. Which, incidentally, could cause one lab to say someone's results are TOTALLY negative, where the same blood, at a different lab, might be thought...
  23. jayhawkmom
    Last night I received a phone call from one of the mom's from my daughter's Kindergarten class. Her daughter's birthday is Friday and she wanted to make sure that whatever was brought in, as a treat, would be safe for my little girl. I had emailed her a few days ago to let her know that if her daughter wanted cookies, brownies, cupcakes... whatever, she...
  24. jayhawkmom
    That depends on the lab... and total serum IgA doesn't typically have a range of 1-10 - it's significantly higher than that. In fact, for the lab we went through, their reference range for total serum IgA was 40 - 400. Anything within that range was considered normal. (again... that's for TOTAL SERUM IgA - nothing else) Mine was 331. However, the other...
  25. jayhawkmom
    I'm one of those who were "nutritionally compensated." I could NOT lose weight for the life of me, UNTIL I started a gluten free diet. I carried around extra and unnecessary weight for a very long time. Going gluten free finally ALLOWED my body to shed the extra is was hanging on to for dear life. Your doctor is wrong. Period.
×
×
  • 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.