Jump to content

Worriedtodeath

Advanced Members
 View Profile  See their activity

  • Posts

    209

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by Worriedtodeath

  1. Worriedtodeath
    I won't ever feed her gluten again. As for hubby he would do what the drs said but he will have to quit work and take care of her because I will not clean up another pool of crap off the floor that came from my child ever again. So he won't either. Those 96 days were pure hell. She had a sick visit during that time for an ear infection and the ped admited...
  2. Worriedtodeath
    Our ped has decided to support the gi and go with a wheat allergy/casien allergy for our negative Celiac blood and biopsy 22 month old. SHe did disagree with feeding her wheat and suggested we do the Gluten-free Casein-free diet for the next 6 months and then reintroduce wheat. If her symptoms return, then she wants to send us to Duke univeristy (she called...
  3. Worriedtodeath
    Do the diet and ignore the drs. We only need them to run the tests but that doesn't mean they have the knowledge to understand them. Remember in highschool the kids you were in school with? One of them became a dr. Does that make you feel better?? It certainly didn't make me feel any better to think that one of those yahoos grew up and became a dr. Or...
  4. Worriedtodeath
    Please try the diet. My youngest at 19 months started us on the Gluten-free Casein-free diet and I extended it to the whole family. Here are the things that have completely dissappeared in 8 weeks (YES 8 WEEKS) Oldest child 10years old - no constipitation , normal stools every other day, bumpy dry skin is disappearing, no tummy aches - He didn't know...
  5. Worriedtodeath
    Not to be the scary person here, but do not rely on any Celiac blood test or biopsy performed on a 18 month old. THey will more than likely be completely negative and a total waste of time and money. The gi you have may agree with this or be like ours - a negative means no. A negative Celiac panel or biopsy does not rule out the disease. My child has had...
  6. Worriedtodeath
    I really think the chances are pretty darn low. Every possible "other" for my baby all could be caused by Celiac or an allergy/intolerance of something. we went into the biopsy knowing 100% what the intolerance was - wheat. Now I am sure there are other gi conditions but for my child everything else had been ruled out or didn't fit any of hte symptoms...
  7. Worriedtodeath
    Sounds like ours. The gi AFTER the contract price with the insurance was around 261. The hosipital charge around 3500 and that was under contract for around 1700. We have to pay a total of our 1000.00 deductible and then our coinsurance of another 800. Honestly we would be better off without insurance. when we did the blood work in JULY the price tag...
  8. Worriedtodeath
    She's doing great. SHe's up a couple of pounds and has at last outgrown all the 12 month clothes and certain types of 18 month clothes. I think she has grown about 1 1/2 inches since starting Gluten-free Casein-free. Compared to where she should be she's only 6 lbs under weight and about 3 inches below height. Her moods are great and she is just a...
  9. Worriedtodeath
    Everything went bad on gluten and everything has improved off it. DIet wise it is a positive for Celiac. It's just the gi is adamant that Celiac is not her problem because the bippsy was neg and he wants us to try various gluten grains until we find one that doesn't upset her tummy. We are going to the ped to review everything since the gi won't even...
  10. Worriedtodeath
    I'm not the one who posted that and I don't have a link for it but I do in my experience know that the TTG numbers correlate to the degree of intestional damage usually. THe lower the TTG the lower the damage. My kids all had ttg of .5 and the one who had the biopsy had no damage which the ped said would probably be the case since the ttg was so low. ...
  11. Worriedtodeath
    Forgot to add the labs were done at the local hospital lab instead of being sent out to a specialist and the disaccharidase was sent to Quest diagnostics nichols institute
  12. Worriedtodeath
    Finally got the biopsy report in today. it has little info and makes me wonder if they didn't do everything I have heard needs to be done on little ones in the early stages of Celiac disease. She was 19 months 9 days and had been on wheat 96 days. DOes anyone out there know?? Here's the report: sample a -esophagus - five gray tissues - alcian blue/pas...
  13. Worriedtodeath
    I'm finding this is my go to cookbook like my 17 year old wore out Cookbook (betty crocker? It's red plaid, I long ago wore it out and lost the cover. I then hole punched it and realized all cookbooks should come this way. SO much easier!!!) It has every basic recipe in it and has yet to turn out a dud. I'll look at that other. I ordered a bunch thru the...
  14. Worriedtodeath
    HI! Hope this isn't in violation of some forum rule. I only saw a short list and I didn't see anything that related to this. DOes anyone have this book and would like to get rid of it or sale it really cheap? I really don't want to pay for a new book since I intend on ripping it to pieces and having it laminated and hole punched but I will since I have...
  15. Worriedtodeath
    None of the various rec depts here have a food policy. It isn't even on their radar. The snacks are brought by parents and most coaches just hand out a sign up sheet before the games start as somebody always wants to know who is providing snacks when. One coach left it up to the team one time and said if you want to do that then work out among yourself...
  16. Worriedtodeath
    At least that's the way ours was. Even to the point of telling us that the only thing wrong with our daughter was a lactase deficiency anc and allergist too incompentent to dx allergies. ???? And a ped who didn't recognize the signs of intolerances and food issues. Now given that my allergist and ped are teaching drs at the med school, participate fully...
  17. Worriedtodeath
    HI! My oldest two are into sports and the season is among us. Snacks are always provided after games and if you thought school food was an issue.......well this is just as bad. Snacks are usually little debbies, crackers, bags of cookies, basically go down the snack aisle and whatever is packaged in single servings and comes 12-24 to a bag is what they...
  18. Worriedtodeath
    Well I made the phone call again to the office (we're not on the best of terms after he told me to put the baby back on wheat and forget about this gluten stuff since the biopsy ruled out Celiac - you can only imagine my response) and the records lady said OOOPS She just forgot to put all the surgical path results in. She would drop them in the mail to me...
  19. Worriedtodeath
    ONly hard to get a piece up and then it pulled right off and then stuck like glue to the lids. THe writing is a little hard to read but since I only need that for reordering, I figure I can pull it back off then. So far they are sticking and don't seem to be coming up. I smoothed them out and pressed them really hard all the way around. Stacie
  20. Worriedtodeath
    Love my asian store. Everything has a itty bitty sticker that translate the ingredients to english. Always has a little old lady and two or three young girls for translation. Flours are cheap I get tapioca, buckwheat, sweet rice, white rice. THey have tapioca beads if you want to do your own grinding as well as some bean flours. I believe I have seen...
  21. Worriedtodeath
    okay SO I really didn't want to do what I needed to do while the baby napped and instead I played with my makeup. I ........ TORE off all the labels and stuck them to the lids I'm just a rebel! But I can now see the colors without having to take off the lid! Doing so helped me come up with a plan for my eye shadows are. I've never played...
  22. Worriedtodeath
    Ohh Good thing about the full versions. I wanted bigger containers to better swirl the brush around in. Here's today look Went back to fairly neutral I think it is slightly too dark or just not quite the color so will go back to sunkissed tomorrow . eyes- did on the phone upper, starry eyed liner, exhale (love that one) in the crease...
  23. Worriedtodeath
    I would suggest going to a fruit/veggie/meat only diet for a couple of weeks or even a month and then start introducing one or two things in each week. Like maybe crackers with peanut butter for snack and pasta for dinner. By the time our baby was dx, she was so picky and ate so little that she liked nothing. And we were so desperate that anything was better...
  24. Worriedtodeath
    HI! I requested the baby's records from the Ped Gi. WHat came was his computer notes - History of patient, discussion of sypmtoms, exam , assesment, and plan of action and procedures with a listing of the of places he scoped that says this Findings in esophagus (enodscopic: NOrmal endoscopic appearance of entire stomach (list several more things like...
  25. Worriedtodeath
    Always keep the district office informed. THey often have knowledge of lawsuits and court cases that the local school has no clue about. Many times, DO people will walk in and instruct the school that we can't reveal why but this and this must be done this way from now on with no exceptions. You will be very surprised at the number of cases the DO deals...
×
×
  • 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.