Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About lcmcafee2

  • Rank
    Community Member
  • Birthday 04/09/1958

Contact Methods

  • Website URL
  • ICQ
  1. Happy birthday and may God bless you today!

  2. Laura, Actually it is only half over. The Endoscope is Monday. I am hoping it goes as easy as the MRI! I will post and let you know when we get the results from that. Thanks for the words of encoragement, means a lot, and I appreciate hearing them. I hope you get answers for you and your daughter. Didn't I read that you were thinking of checking into having the biopsies? If you go the the GI and have the biopsies and they come back as Celiac that would definitely give you direction for your daughter. The waiting... testing.... waiting... explaining.... yadda.. yadda.. yadda.. makes it so frustrating. I have been gluten free for a few years now and for me just putting a name to the symptoms was a relief. Thanks again, Laura
  3. Well Julie had the MRI yesterday and the nurses were great. They put the cream on the back of her hands, so when it came time for the IV she didn't even react. (It took five of us to get the hand bone x-ray done last year... she went crazy) After the first two medications they put in she drifted out ..... She was a real trooper! Once we got home she wanted chicken noodle soup so I fixed her some and she has been throwing up when she drinks/eats ever since. This morning I am going to call the doctor for something for the vomiting, since I am not sure this is from the medication or the gluten from the noodles. Monday she will have the biopsies. I sure hope we start to get some answers. Her weight is still at 29 pounds and we have been pushing a high calorie diet for 2 months now. Anyone know how long it takes the biopsies to come back? In the hospital, right after my scope they told me to go gluten free, do they do that for the kids? Laura
  4. She has the MRI first and I believe they are doing a contrast so that will be another needle. They have said the sedation willl be the kind that I can be there with her almost the whole time. Then the next week is the scope and the sleep medication. I believe they plan to put the IV in to put her to sleep with. We have to be there a half hour earlier for them to use some kind of cream on her arm to make it easier or less painful. Last week she got a flu shot. The nurse ask her if she was going to cry ... Julie just looked her in the eye and said "I don't cry, but I fight!" I counted the folks in the room, totaled four and hoped that was enough! She actually did very well. I held her and she got the flu shot without any more comments or actions ..then marched herself out of the room. My family mostly think I just want someone else diagnosed "with me" so I am not the only one with Celiac in the family. It angers me for that. Julie is our granddaughter we have had custody of since birth. I KNOW her. I quit my job to stay home with her and her brother (10 months older than her) This child has been on prevacid for a year now with some improvement. At least she isn't throwing up once or twice a week. It has improved to 3-5 times a month. Back in June of 2005 this is a quote of what I got when I asked for her results of the tests. Labs: Amino Acid, Serum - Normal; IGF - I 72; Normal bone age; Cortisol 11.5; T4, Total 9.3: TSH 1.130' IGFBP - 3 2.1 She just had another set of labs done and I have yet to hear about them. It is almost like pulling teeth to get them to send me a copy of the results. She has insomnia and it wasn't until she turned 5 (last month) that she actually stayed in her bed and slept the night. Now at least half the time she sleeps through the night. I feel she needs the diagnosis confirmed or ruled out in case we need to enforce what she eats for when she goes to her mothers. If she has to be gluten free her mom would not abide by that unless we had documentation. Sorry for running on so .... I am just getting stressed about this for her. Laura
  5. Oh JEEZ, I have been pushing for the biopsy for our little one now for a year. Last year I was told I was unreasonable to expect them to order the test just because I had Celiac and she had what I thought were symptoms. (Vomits freq. weight is at 29 pounds, below the 5% in height, headaches and she is only 5 years old, mouth sores, windy, says she has "sick-ups all the time etc..) Finally she is scheduled for it next week. I had not though it would be so terrible for her. I have had two of them and where I was at they were generous with the medication. We are going to Children's Hosp. for the scope and a MRI within the next week. This has been going on now for 2 and a half years. But because her blood work did not confirm the Celiac they decided to do tons of other tests to rule out eveything else. Say a prayer for her on the 8th and 13th. Laura
  6. Yes, Dr. Sheets is an DO. I checked into their requirements for medical training and found them acceptable for me. My GI MD referred me to him when he was confused about some of my test results. During the appointment (once there I did not have to wait but a few minutes to see him, they keep things right on schedule) he asked alot of questions like family history, family origions, and tons of things I now know are symptoms or "red flags" for Celiac Spru. Hope you can get your referral! Laura
  7. Sex: Female Age: 47 Date started gluten free diet: "sorta" Nov. 2004 "for real" March 2005 Suffer from the following on a regular basis since starting treatment: Constipation No Diarrhoea Yes (*) Abdominal pain No Indigestion No Acid reflux No Other related problems nausea, fatigue, depression, headaches, low iron (always deferred at the Red Cross for donating blood) insomnia, and poor dental health despite proper oral hygiene! (*) foods like oranges and tomatoes cause me problems
  8. I went to Dr. Sheets. He is in the Ohio Gastroenterology Group, Inc. They have three offices I went to the one on Olentangy River Road 614-457-1213. He took his time with me, listened to me and asked a lot of questions. Good luck!
  9. We have 3 & 4 year olds that are possibly celiac disease. They see the pediactric GI tomorrow. Could you send me the play-dough recipe? They just love to play with that stuff. Thanks Laura
  10. celiac3270, Please send me both lists as well. (Unzipped if you will, I don't know much about computers and wouldn't know how to open it zipped) Appreciate you! Thanks
  11. Monica, The doctor has no idea yet that I feel our 3 year old granddaughter had celiac disease. We are just now getting a concept of how broad the brush is with Celiac Disease! It has only been 5 months since we even heard of it and I am in the process of documenting her symptoms. She sees a nutritionist on the 14th of this month and I am going to start there. (The kids receive milk/cereal through WIC) We have the kids on our insurance so there will be no problem following through with her symptoms. The doctor that won't order the test is her dad's doctor. Because our son has a hard time with communication, I went with him to the doctor's. I wanted to explain to him that I was diagnosed with celiac disease and wanted to tell them his symptoms, to see if he would order the blood work for him. We have been going to this doctor's office for years so they know the family and history. (I changed FROM them to another doctor and that is when the celiac disease was found.) I just started when the doctor looked at me, rolled his eyes and said .... he doesn't have that .... and that was the end of that! Since my son is 25 and an adult it is up to him to decide from there where to go. Though I will encourage him to find out somehow if he has it. He is on the State Medical Card and the list of doctor's to go to is limited. Blessing, Laura
  12. Here is another thought about the 504. It seems like all of the folks that are on this site and post are good parents/educators that are willing to take the time to educate themselves, their children and others about the disease their child has. What about parents that do not have the mental ability to do that? Our son was diagnosed as Developmentally Delayed and I found it was a continual educating process to keep up will all the needs he had and legislation that provided the resources or education he needed. I am seeing this 504 as a RESOURCE for parents that are new to the celiac disease diagnosis of their child. Perhaps the teacher has/had another student that has celiac disease. Maybe she/he can HELP the parents with the process by sharing her knowledge. I am NOT saying that is a responsibility of the teachers .... just a possible sharing of her/his previous experience or knowledge. Or maybe it is an oportunity to add education for the teacher. All the teachers we delt with were very open to us sharing our suggestions, it helps them be better teachers. (We have three teachers in the family) I have celiac disease Diag. Nov. 2004) and suspect that my son (now 25) has it. His doctor won't order the blood test (State Medical Card) While he was married, to another individual that was Developmentally Delayed, they had 2 children 10 months apart. Needless to say they could not raise them and we now have custody of them. They are ages 3&4. I suspect the 3 year old has celiac disease. To date her doctor has put her on a can of Pedisure a day for the last year (little or no weight gain/growth) IF the kids would have still been in custody of their parents neither of them (parents) would have the ability to "self educate" themselves about the disease. Or the ability and disipline to follow the diets that are required. The children of the folks that post here are Blessed! They have parents that are willing to go the extra mile to make their lives safe and secure. The are good parents. There ARE parents who would just not take the time (or have the mental ability) to notice their child's symptoms, educate themselves about the disease and then try to help their child. HOWEVER, I do not think much of the law suit the parents in the article have pending. The School Board and Superintendants positions are elected positions and that is where the parents should have started. In my opinion. Well that is my two cents ........... for what it is worth. Laura
  13. You will need the vanilla for the Vanilla Wafers! That was what I enjoyed about them I use real vanilla not the other. I think gluten-free flours or flour mixes can be ucky and the vanilla covers that taste. There is also a recipe for chocolate wafers adding cocoa, that I will be soon trying! Enjoy! Laura
  14. Karen, I read the concern about taking Prednisone and wanted to share with you my experience with it. Taking the Prednisone wasn't too bad for me, maybe you'll be OK with it as well. I first took 10 mg for a week and did notice mood changes , but no let up on the symptoms. Then a couple of months later the doctor put me on it again at 10mg for a week, 5mg for a week 2.5mg for a week then 2.5mg every other day for a week. I finished the last dose 2 months ago and the diarrhea is gone. I am glad to see some positive results finally! I had that bout of diarrhea since last Summer I really did not have any bad side effects from that second round of Prednisone. I was told not to have surgery for a year since I had taken so much of it. I didn't get the "moon face" or any weight gain. Now, I am keeping a food journal and following up with some other tests from the doctor for fatigue I cannot seem to get past. If you have to take it .... I wish for you the same "good" results! Laura
  15. Vanilla Wafers 1/4 Cup Margarine at room temp. 2 TBS. Honey 1/2 Cup Packed Light Brown Sugar 2 tsp. Vanilla Extract 1 & 1/2 Cups flour blend (gluten-free) 1/2 tsp. Xanthan Gum 1/2 tsp. Salt 3/4 tsp. Baking Soda 1 tsp. Cider Vinegar 2 TBS. water, if needed In a food processor, combine all the ingred. and process until the mixture forms a ball, adding water only if necessary to form a ball. Cover the ball tightly and refrigerate for 1 hour. Pre-heat oven to 325 degrees. With rice-floured hands, shape into 1 inch balls and place on the prepared baking sheet. Bake for 15-20 minutes, or until lightly browned. Remove and cool on wire rack. From Wheat-Free Recipes & More (WONDERFUL BOOK) Carol Fenster, PH.D. I have made these and they are good. Mine turned out crunchy and had an excellent taste.