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  1. Thank you for all your replies! She drinks silk soy milk. Do you guys trust cereals like fruity pebbles that claim to be gluten free?

    I am going to try and keep my house as gluten free as possible we are a large family so it's a bit hard to go completely gluten free all the time. Though I do try and cook lots of naturally gluten free foods (chicken and rice etc)

    I also spoke to the health para and told her to be aware during snack time and not let her share snack with anyone even if it's gluten free, since all these snacks pass from hand to hand. (gross)

    I will keep up her log and perhaps add in new foods I introduce to Her. Gosh this is a full time job!

    Thank you again for all your input!

  2. Let me clarify a little (sorry), She really is gluten free. She is very good about the diet. Once in a while she'll either get Glutened by mistake (she doesn't know how to read yet, but I really am very on top of her). In school she has a health para who checks everything and is in contact with me throughout the day. I make her leave the room during baking activities just in case. If she sneaks (was more when she was younger) I know about it right away she can't hide it. (she loses her voice right away)

    I keep a log of how she feels, she has been great for the last 6 mts, yet something is still "off"

    She hasn't been intentionally Glutened in months, I don't even think by accident. I know how she feels when she is completely gluten free. Shes a totally different person.

  3. I need to start over. My daughter was diagnosed over 3 years ago she is now 6. She if off gluten, dairy and most fruit. She has been doing pretty well on the diet, she sneaks once in a while but I'd say about 95% of the time she's gluten free. Her last blood results were good. Buutttt I can tell she's still not 100%. She's having slight symptoms and it is bothering me. She grew 3 1/2 inches since her last yearly well check but she's still very very short. My other kids are short, but not nearly as short as she is. Her growth hormone was tested in Oct, it came back slightly below avg, I just want to know that she's healthy. Hurts me inside....

    Ok now for my questions...

    1. Are there any foods that you know of that seem or were advertised as gluten free that aren't? I know the list is huge... She eats mostly the same foods over and over.

    2. Pediatrician said it's overkill when I mentioned I wanted to buy her a set of cookware /cutlery July for her to be on the safe side. Is there a need? Am I just paranoid?

    3. When it says may contain/ made in the same factory as wheat, I always stayed away from it. Is there really a need to?

  4. Oh, you guys...I'm having a positive day today, but I'm all too happy to join in!

    I am SICK of not being able to go out to eat. I am sick of not being able to let my kids join in other kid's gluten fun without getting glutened myself. I am sick of my son asking me if we can stop for a burger or have regular pizza, and having to crush him. I'm tired of telling them that you have to...basically...eat food you don't like...or it will kill mommy! Not in those exact words of course. I'm sick of being too afraid of going on vacation, or staying at someones house. Most of all...I'M SICK OF ALWAYS STARVING! My husband is sick of paying hundreds of dollars per week on grocery bills, and I'm sick of seeing a lot of it going in the trash cause my kids won't eat. I'm sick of having to ask my husband what he ate for the day, before I kiss him...or being afraid of even being touched by hubby or the kids until I know that they are safe. I'm sick of meeting family for dinner or a gathering and being too afraid for anyone to touch me. Also another most of all...I am sick of finding out that safe foods have gluten contamination in them, and not knowing that's what is affecting me.

    Ahhh...I feel better.

    YES!!!! Or how about when people say "Ok, at least you know what it is...coulda been worse..." Easy for you to say as you bite into your fried high gluten donut and sip your milkshake!!!!

  5. Im sick and tired of all these food companies that write GLUTEN FREE on their labels, just to find out there's enough gluten in it to set an uproar in a celiac's indsides.

    Im sick and tired of all these candy companies that you would never even think would have gluten in it, has a teeny tiny drop of gluten listed in its ingredients.

    I'm sick and tired of all the people out there who judge my daughter as if she's an immature baby when I know it's all because she ate gluten a week before.

    I'm sick and tired of people commenting "MY! She's so SHORT!"

    I'm sick and tired of ignorant people who no matter how much you TRY and educate them on celiac disease still manage to comment "SOMEONE HAD AN ACCIDENT!!!! IT STINKS!!"

    I'm sick and tired of spending a buttload of money every week for simple things like noodles and a tiny loaf of bread.

    I'm sick and tired of preparing double the amount of meals, just to find out that my celiac doesn't have an appetite because she's still recovering from that stupid minute amount of gluten that was hiding in her food a week ago.

    I'm sick and tired of people telling me I should leave my daughter back with the younger grades because she seems so "shy and anxious" at times. She MUST be immature and dumb. No matter how much you try and explain to people how gluten also affects the behavior of a celiac, they just think they know better.

    I'm SICK AND TIRED of a TEENY TINY little drop of gluten will set my celiac off track for 2 full weeks!! 2 FULL WEEKS!!!!

    and I'm SICK AND TIRED of people just NOT GETTING IT.

    Feel free to add.

  6. 100%. I can tell when my daughter becomes glutened even before her physical symptoms start to show. She gets extremely cranky, her voice gets hoarse, she throws incredible tantrums, she becomes extremely fatigued, and nervous. She turns into a grump. It is so difficult to watch her go through with it...

    It lasts about a week, slowly getting better as the week goes on. But I'll tell you, it's not fun to deal with. On the upside, when she is completely gluten-free, she is an absolutely different child! Happy, upbeat, easygoing. Everything a normal child should be!

  7. Wow, that really puts things in perspective katie! Thank you! I just hope she learns to control it before she starts to get embarrassed about it in school... Never a dull moment!

    But I have to say, she does SO BEAUTIFULLY when she is fully gluten-free! Call me crazy, but she looks..Peaceful would be the word I'd say. I like those days ;)


    Sorry, had to let it out.

    My daughter (3) woke up covered in diarrhea this morning. I let her stay home from school because I don't know if she will soil herself in school. I don't get it. Why does she soil herself only when she is glutened?? It's usually very constipated when she's been glutened so I think this diarrhea was the last of the reaction this time around.... and it smells! So HORRIBLE!! Poor kid. I try not to freak out on her its not her fault...

    But why can't she make it in the toilet? It's a teeny tiny rotten smelling poo like 5 times a day for a week until the reaction passes. funny though, she never wets the bed at night. It's only during the day. The teachers are instructed to send her to the bathroom every hour. and she usually goes- Full bladder!

    I'm just so overwhelmed with the constant #1 and #2 accidents I'm not getting what the connection is to gluten but it happens every time. I guess that's just how she reacts. It's just so HARD. I feel so dirty, so irresponsible, so I cant even explain how I'm feeling. I don't even know if I'm making any sense.


  9. My daughter (now 3) was a monster until she went gluten free. She was SUCH a hard kid. She would throw crazy tantrums, run around the house like a maniac, jump from crazy heights and laugh when she fell down, never ever slept, would climb up on the counters with a chair and step stool on top of it. We used to joke that she's stronger than my 7 year old. She also had tremendous anxiety. She got kicked out of school because of it too. She's a changed person since she's gone gluten-free. she is SO much calmer. she's happy, and she uses her brain now before doing something dangerous. She started a new school and is doing beautifully (aside from her accidents but they're willing to work with her) The difference in behavior is unimaginable.

  10. My daughter has been gluten free for about a month. A week into the diet, her bloated belly went down to half the size. I am SO careful with what she eats. Her teachers have instructions to feed her NOTHING aside from what I give her and I am SO careful preparing her food and such. Today her stomach is HUGE! I'm a cabillion percent sure she's not eating gluten. She also has reflux and a milk allergy and is on zantac for the reflux. What gives???

  11. ok here we go.

    cs pnl+hdl, tibc w\ fer rfx glucose - 85 reference range- 63-139 mg\dL

    sodium- 139 reference range- 135-146 mmol\L

    Potassium- 3.5 (L) reference range-3.8-5.1 mmol\L

    chloride- 102 reference range-98-110 mmol\L

    carbon dioxide- 20(L) reference range- 21-33 mmol\L

    Urea nitrogen 10 reference range- 7-20 mg\dL

    creatinine 0.31 reference range-0.29-0.68 mg\dL

    uric acid- .5 reference range-2.0-5.1 mg\dL

    phosphorus- 5.4 reference range-3.0-6.0 mg\dL

    calcium- 10.0 reference range-8.9-10. mg\dL

    cholesterol, total- 12 reference range-125-170 mg\dL

    HDL cholesterol 58 reference range-37-75 mg\dL

    Cholesterol\HDL ratio 2. reference range-<=5.0

    LDL CHOL, calculated 7 reference range-<110mg\dL

    Triglycerides- 48 reference range- 33-115mg\dL

    protien, total- 7.0 reference range-6.3-8.2 g\dL

    Albumin- .7 reference range-3.6-5.1g\dL

    globulin, calculated- 2.3 reference range-2.0-3.8g\dL

    A\G ratio- 2.0 reference range-1.0-2.1

    bilirubin, total- 0.7 reference range-0.2-0.8mg\dL

    Bilirubin direct- 0.2 reference range-<=0.2mg\dL

    Alkaline phosphatase- 195 reference range- 96-297U\L

    GGT- 12 reference range- 3-22 U\L

    AST- 43(H)reference range-20-39U\L

    ALT- 27(H) reference range-8-24U\L

    LD- 257 reference range-135-345 U\L

    Iron, total- 52 reference range- 27-164 mcg\dL

    TIBC- 368 reference range-271-448 mcg\dL

    transferrin saturation- 14 reference range-8-45%

    TSH, 3rd generation- 1.16 reference range-.50-4.30 mIU\L

    ferritin- 28 reference range-10-143 ng\mL

    cbc (Includes diff plt)

    WBC- 11.0 reference range-5.0-16.0 Thous\mcL

    RBC- 4.01 reference range-3.90-5.50 Mill\mcL

    hemoglobin- 11.8 reference range-11.5-14.0 g\dL

    hematocrit- 34.7 reference range-34.0-2.0%

    MCV- 86.5 reference range-73.0- 87.0 fL

    MCH- 29. reference range-24.0-30.0pg

    MCHC- 34.0 reference range-31.0-36.0 g\dL

    RDW- 13.4 reference range-11.0- 15.0%

    Platelet count- 254 reference range-140-400 Thous\mcL

    MPV 8.9 reference range-7.5-11.5fL

    total neutrophils%- 58.8 reference range-35-65%

    total lymphocytes %- 33.2 reference range-25-65%

    monocytes %- 5.5 reference range-0-10%

    eosinophils %- 2.1 reference range-0-6%

    basophils % - 0.4 reference range-0-2%

    neutrophils, absolute- 6468 reference range-1500-8500 cells\mcL

    lymphocytes,absoute- 3652 reference range-2000-8000 cells\mcL

    monocytes, absolute- 605 reference range-200-900 cells\mcL

    eosinophils, absolute- 231 reference range-15-600 cells\mcL

    basophils,absolute- 4 reference range- 0-250 cells\mcL

    ESR, Westergren- 5 reference range- 0-20mm\hr

    IGA, Serum- 54 reference range-33-235mg\dL

    Tissue Transglutam AB IGA <3 reference range-<5U\mL

    Vitamin D, 25-OH, LC\MS\MS

    Vitamin D 25-OH total- 19(L) reference range-30-100 ng\mL

    Vitamin D 25-OH, D3- 19 reference range-ng\mL

    Vitamin D 25-OH, D2 <4 reference range-ng\mL

  12. One of my daughters are diagnosed with celiac so I tested my other kids too just to be sure. I have a copy of the bloodwork results although the Dr said it was negative I wanted to doublecheck with you guys (since I have no idea what the levels mean)

    iga - kid(7 yrs old) 1 - 189 tissue transglutam less than three (for all kids)

    Kid 2(5yrs old)- 54

    Kid 3(6yrs old)- 97

    There are a whole list of other tests if you need any other level that I haven't listed....