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About debbie_doodles

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  1. Hi there. Little bit of background: My daughter is now 5 and a half years old. She was diagnosed at 2 years old. I have been wondering about her diagnosis all along...thinking it might have been incorrect, but have had her gluten free for 3 and a half years. Her symptoms were poor sleep, lots of vomit, and diahrea and irritability. After lots of testing, her bloodwork came back negative (which could happen in a 2year old right?), but the doctor said she tested positive for both of the genes that carry celiac. My husband was tested and only has one gene...but he has aunts and grandparents that have wheat problems too. My daughter had endoscopies done and biopsys. The doctor said they were positive for celiac, but didn't elaborate. He said he was unsure himself if it was celiac or cows milk allergy or something. So we went gluten free. However, at the exact same time my daughter was being test for acid reflux. Which we knew she had pretty bad due to the projectile vomiting. She was put on pills for it, and every time we took her off of them, or lowered her dose, she'd start throwing up and get cranky. So she stayed on them until just under a year ago at which time we took her off of them and she seems fine. Her GI wanted to do a "gluten challenge" on her because he just wasn't 100% sure she had celiac. He said he was 99% sure. I told him to forget it, and haven't been back since then since she had improved. However....now its 3 years later and I'm still questioning if she does have it. The acid reflux has cleared up, so how do I know it wasn't just causing all the issues? And heres the big thing...about a month ago I bought her some new vitamins and gave her one---THEN checked the bottle (I know, big no-no). They had wheat in them. I completely panicked....but NOTHING happened. So if she has celiac disease, wouldn't she have reacted to the vitamins? So then we hid them, but she found the a few nights ago and took 2 or 3 of them. STILL no reaction. Should I do my own little gluten challenge on her and give her just one thing to see if she reacts? What exactly does the biopsy tell the doctor? he never explained to me how he came up with celiac disease. And all the vomit stopped after she got on her acid reflux pills. Any ideas or thoughts? I REALLY REALLY don't want her to have to live gluten free (at her age it has been SO hard...all the birthday parties and pizza, etc) if she doesn't have to. please help. debbie in Arizona
  2. Hi, my daughter has been gluten free for 3 years now..but is now starting kindergarten. What is a 504? and do I need to get it so her school helps her? I'm confused! Who should I get the note from..her PCP, or her gastro? Thanks!
  3. Last year for my daughter's birthday we took her to Disneyland and had a great experience with food options for her. Does anyone have any ideas about things/places she can eat in Universal Studios in Hollywood and at Knotts Berry Farm? Any info at all or anyone I can contact will be of great help! Thanks!!
  4. I just noticed that about Cocoa Puffs. I'd been buying them for my daughter and when I went to pick up some more, I checked the label like normal and saw WHEAT. I was so mad I could have thrown a serious tantrum right there in the store!
  5. okay, so even though the fries are NOT on the gluten free list on their website, they ARE gluten free if cooked in a dedicated frier? also, I had heard that the frosties were not safe because they had malt in them. Is that not true?
  6. Wow. this sounds amazing. Does anyone know if Disneyland has the same kind of service? We are going there this winter with our 3 year old daugter with celiac.
  7. I have a question about enterolab too....my daughter has been gluten free since april 2005. Can she still do the test and will it come back with correct results? Or has my daughter been gluten free for too long?
  8. I'm confused about this very topic. My daughter's initial work came back negative, but then she had a biopsy and the doctor said it was positive for celiac, but it could also be other things. So we went gluten free in April 05. He rebiopsied in Dec. 05 and said that a lot of the damage in her intestines had been healed and he was almost certain she had celiac. THEN I saw him 2 weeks ago and he said we still needed to do the gene test. Many of my husbands family have wheat sensitivities, but none have been tested for celiac. So we did the gene test and they said it came back positive for ONE gene, but NOT the other. And so they don't think she has it. They said if she had celiac, then she'd be positive for both genes. And that the gene she tested positive for is the one that 39% of americans test positive for. I'm so confused. Now he wants to do a gluten challenge on her to see how she reacts to gluten. She's only 3 and doesn't really tell me if her tummy hurts after eating something. Plus, she has really bad reflux and if she misses any of her doses of medication, then she is really sick.....so that makes the doctor think that she doesnt' have celiac because her reflux hasn't cleared up at all. What is it with doctors? Does anyone really know about these tests?
  9. My daughter has been diagnosed with celiac disease. She is now 3 and a half and was diagnosed last april. First she had the test, which came back negative, but I was told that it could come back negative in many kids. So then she had a biopsy. The doctor thought she had it, so she made me put her on a gluten free diet. We did see improvement, but she also has really bad reflux and so if she skips a pill for that, she's very sick (similar to when glutened). so then after going gluten free for a little over 7 months, he did another biopsy and said he was really sure she had it because the damage in her intestines had gotten better, etc. Now I saw him today and he said he is still trying to "rule out" celiac disease as what she has. There is a strong family history for it (a great uncle that had it and several great aunts that have wheat intolerance, but have never actually been tested). Now the doctor is ordering tests....Celiac Disease Panel. He said its to see if she has the gene for celiac disease. He also wants my husband and I tested to see if we carry the gene. Then he said if those come back positive, he wants to do a gluten challenge and that will tell us if she really has it. Isnt' that a bad idea? Isn't it feeding the very thing to my daughter that we've been trying to avoid? How much proof does this guy need? Should I refuse to do it? If the initial tests for the antibodies came back negative, then how does he know it will come back positive this time? What is he trying to accomplish by doing this?? I need help!
  10. I recently called Campbells about their new line that comes in the Gold Box. I think it might be Gold Label soups? Anyways...they said that all of those were gluten free EXCEPT the one. They even have a tomato version that is gluten free. I was pretty unbelieving the first time, so I called back and got a different person and they said the same thing. I also had called Pace and was told that their salsa (mild version is what I called about) is gluten free. that is the salsa that we use.
  11. My daughter who has celiac is 3 and a half. I want to get her in a preschool in the fall. then next year it will be time for pre-kindergarten and then kindergarten. I am PETRIFIED to put her in a public school. here in Arizona the kindergartens have about 30-35 kids to one teacher. No way could one teacher keep a close enough eye on my daughter. I looked into private schools but they run $350-600/month and we can't pay that. charter schools still have about 25-30 kids with one teacher and one assistant in each classroom. How many parents have school-age children? And are they in public or private schools? Does anyone homeschool their kids until they are older and can watch out better for themselves? Any ideas would be helpful. I'm at my wits end.
  12. Is there a government program or something that will give us grants to help pay for gluten-free food for our kids since it is a medical necessity? Any info would help...this is getting expensive. thanks!
  13. I had heard about an event in Phoenix, Arizona called "Make Tracks for Celiacs". I am sure they have it in other locations too. How do I find more information about this and get involved?
  14. Jo Ann, which Outback do you go to? I'm nervous about taking my daughter and wanted to know if you've had success at the one by me (McKellips and gilbert roads) I want to try the pizza place in Scottsdale even though it is farther away because i want to see the items available at the store across the street. I am so excited to try this.
  15. So is this due to the damage in her intestines already? Or from her intolerance to wheat? Or is there a chance that she has this instead of celiac? (still hoping I guess)
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