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1974girl last won the day on June 9 2012

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  1. Ok, just when I think I have this thing figured out!!!!  I just called the Atkins hotline since I had bought some frozen dinners for my daughter.  No gluten ingredients listed but I just wanted to make sure since I had the horrible experience with Campbell's hiding barley in their 2% of "secret recipe".  The lady answered and said no, they were not gluten free because of the modified food starch.  She told me she herself had celiac.  I told her that in all the info, MFS in America has to be declared if it was wheat and should be on the label.  It was not.  She immediately told me that yes for the FDA but not the USDA. They do not have to declare it. So apparently the meat must have it?  She told me that she herself did not learn that until starting to work for Atkins.  Does anyone know if this is true? I am stunned.  For a whole year, I have thought I was keeping her safe.

  2. If he is getting glutened, I wouldn't think the couch would be the first thing that popped in my mind.  I would guess eating out, grandma's house, or playdough. Maybe even another food sensitivity.    My GI doctor had a good long talk with me about keeping my sanity after my husband told her I was going crazy.  And he wasn't joking.  I had accidently given her something with hidden gluten in it (not on label as rye or barely) and it freaked me out for days.  I saw everything as poison to her.  She (who is a strict doctor) told me, "One cigarette a year won't kill a person.  One cigarette a month won't kill a person.  It is just like that with gluten. Oh, she might have a little diarreah but it won't kill her to get accidently glutened."  So when I looked at it that way, I lightened up.  Not with my gluten but with my obsession that everything was going to cause lymphoma. 

  3. We are a mixed household. 3 of us are not gluten free and my daughter is. We never worry about furniture. In the kitchen, we do wipe down fridge handles, counters, etc after touching anything with wheat. We wash our hands after eating a sandwich. BUT...we don't do anything different with furniture. My daughter still has normal bloodwork showing no exposure. If that dog died 2-3 years ago, I am sure you are safe.

  4. I am so sorry. I met a lady who was diagnosed celiac after her and her husband bought a pizza parlor! She now offers gluten free crusts. She makes them at home and then takes them to the restaurant to prevent cross contamination. (Not sure if that is FDA allowed but I trust that more than making them there!)

    Children with autism are often on a gluten free/dairy free diet. You could make cupcakes and birthday cakes for them in addition to celiacs. I had a friend this week complain that no one made dairy free cakes! You may could just adjust your specialty. There is a gluten-free bakery that will ship to your house. You could be one of those, too! Celiacs would love a totally dedicated gluten free bakery! I'd love for you to come to my town!

  5. Is the death rate the only thing to think about??? What about quality of life????

    She will tell you her quality of life was better before. Of course, she has no intestinal symtoms and could eat a loaf of bread with no symptoms. So she would revert back to not taking her own food to sleepovers and potlucks. She'd love to be able to eat anything off the menu at any restaurant. She has broken into tears at the sight of Krispy Kreams. But she is 12 and that's just a tough age to be different anyway. So if I was to go on quality of life.....I'd let her eat gluten. But she really does good. She had the donut meltdown within the first 2 months. It's been a year now and she is doing great. I did have her GI appointment this week. I asked her about that topic at the conference. She said nothing has changed and you treat silent celiacs. She said, "they have to come up with topics to get you there." She said every year she has to go to a pediatric GI conference but there is hardly ever anything new.

  6. You can read the whole article called "Mortality Rates for Celiacs with Persistent Villous Atrophy Similar to those with Healthy Guts". It is on the Publications and Publicity board...page 2. I don't know how you tell the difference between refractory sprue and someone who just doesn't stick to the diet. Both would have villious atrophy. Nevertheless, I am keeping my silent celiac child on gluten-free until something cures it. My dh is type 1 diabetic and the doctors are hoping in some small way this may prevent it from triggering in her. Plus the whole infertility thing....just playing it safe and keeping her gluten-free.

  7. So I get my invite to the Chicago Celiac Center's celiac convention. One of the topics is "Silent and Latent Celiacs: To treat or not to treat" Really? Is there any new info? I have kept my silent celiac child on gluten-free to the point of ocd obsession! I thought it was just standard knowledge in the celiac world that you treat silent celiacs...period. At least it is on this board. :D I did just read an article where a study said celiacs die at a normal rate like other people. (After reading another article that said the opposite) So maybe they are deciding something different?

  8. I have been ready a TON about how type 1 diabetes may be linked to a Vitamin D def. My husband has type 1 and my daughter has celiac. She has both the DQ2 and DQ8 like he does and so, we can't rule out future diabetes. He was 19 at diagnosis and she is 12. Anyway, I know low vit D can accompany celiac. How much vitamin D are you giving your kids? The artical said the 400mg recomendation for kids is wayyyy too low. But it didn't really ever give a number. I am giving her 1,000 mg and I wonder if that's even enough. Do any of you do more than that?

  9. Just want to make sure you have had her thyroid tested. It goes hand in hand with celiac sometimes. My dd was short at 7 and we discovered that she had hypothyroidism. She started the meds and grew 2 inches in 6 months. The doctor said that height not weight is an indicator in children. 4 years later same dd was diagnosed with celiac. Just wanted to throw that out there.

  10. I am going to be in the minority here I know but I'd retest her in 6 months. Did they do the Ema test? If that was positive, ignore me and go gluten-free now. It is 98-99% accurate. My daughter was tested when her sister had celiac. She had a slightly elevated TTg and neg on ema. 2 GI doctors told metro retest in 6 months. We did and she was normal. We will continue to retest her but I wasn't willing to put her on gluten-free for life for a weak positive on only one thing (all other panels were normal). If she still shows high in 6 months, go gluten-free.

  11. I know I posted this thread but thanks for the new tips. I can't find the cinnamon chips this year. My friend ordered them online but I don't need them that bad. And jersey angel- thanks for the cookie tip. I made them last night and so they would sit overnight. You are so right! gluten-free stuff gets better overnight! And the cookie way eliminates any sticking to baking cups! The cream cheese was a hit with my daughter too!

  12. Add my 12 year old to the EE list. She has no symptoms if it. No swallowing issues or food getting stuck. They found it on accident on the way down to take the celiac biopsy. We have eliminated everything that was positive in the skin test and her patch test showed nothing. After eliminating all beans peas apples pork mustard gluten cantaloupe and bananas, she still scoped with EE. The "by the book" doctors will tell you to eliminate and rescope every 3 months but that's thousands of dollars for us and she has no symptoms we have scoped twice and the gi doc thinks it may be the fall allergies that made it bad this time. It may not even be food. She did not want me to do the elimination diet until she had symptoms. So that's where we are now. We avoid what showed up but will not keep scoping or eliminating more foods until she has a symptom.

  13. We did get tested at first but will not continue until symptoms. 30% of people carry it and yet they don't get tested every year. My other daughter has been tested twice and we will probably test her every 3 years. My husband says he will not do anything different if he has it. (Roll eyes). Actually I read an article that less than 50% of people who have diabetes and celiac are compliant with gluten free. Just too many restrictions I guess. Among non symptomatic people it was even lower. Oh you asked how long she has had it. She has had low thyroid since 7 and they did the celiac test every few years due to the connection. At 11 it was positive. We found out a few days before this past Christmas.

  14. My dh has type 1 but no celiac (as of now). My celiac daughter has no symptoms either. I wonder if there is a connection. My daughters genes are the same as his dq 2 and 8. We have been told that we are lucky to find the celiac first and by going gluten-free we may be reducing the risk if type 1. We also take 1000 mg of vitamin d due to recent diabetic research. I do not have celiac either but obviously carry the gene since my dd has two.