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kempy99 added a topic in Celiac Disease - Parents of Kids or Babies With Celiac Diseasegluten-free Sun ScreenHas anyone had any luck getting confirmation from the manufacturer about gluten-free sun screen for kids. Hawaiian Tropic cannot guarentee that theirs is. Here' s the response I got from them:
Thank you for your email. With our present raw material information, we
can not say for certain that a product is Gluten-Free. We will not be
able to make any recommendation as to which of our products would be all
right for you to use. Based on this we don't feel it's appropriate for
us to make a recommendation that could affect the health of someone who
is sensitive to gluten.
Also what level of risk are we looking at? Is it that the gluten could be absorbed by the skin and get into his sytem or is it just if he would ingest some of it? (residue on hands, etc...)
Thanks in advance for your help!
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kempy99 added a topic in Gluten-Free Foods, Products, Shopping & MedicationsGluten-free Casein-free ChoclateAnyone found good gluten-free/cf chocolate? Also when that labels says "cocoa butter" is that a dairy ingredient?
Thanks for your help!
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kempy99 added a topic in Gluten-Free Foods, Products, Shopping & Medicationsgluten-free Vanilla-flavored Rice Or Almond MilkMy 3-year-old was recently dx with casein intolernce (on top of the gluten intolerance). His doc suggested that we rotate soy/rice/almond milk with him. I'm wondering if there are any suggestions for a good-tasting vanilla-flavored ones.
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kempy99 added a topic in Gluten-Free Foods, Products, Shopping & MedicationsCasein-free Replacement For CheeseMy 3-year-old was recently diagnosed with a dairy (casein) intolerance, on top of the gluten intolerance. Up until last week, we had been indulging in a great homemade gluten-free pizza recipe. Pizza crust from Chebe, Prego traditional spaghetti sauce for the sauce, hormel turkey peperoni and mozerella cheese. Well, nowcheese (and all dairy) are off limits. And what is pizza without cheese!!!!! So I went out in search of some alternative cheese product. I found some called RICE. The front of the package says "shredded dairy free mozerella-flavored cheese substitute". It is made from a rice beverage. The package says, melts like real cheese. So I thought "Ok, we'll try it". To our surprise it was really good, but then I read the back of the package. Low and behold, 'casein (a milk derivitive)' was in the ingredients list! Ugh, I am so nieve! Thinking that the front of the package says "dairy-free" I thought I was in the clear. I guess not! And I'm finding that alot of prodcuts that are labeled "dairy-free" are infact not, because they contain casein. How can they make those claims!?!??! I'll stop with the ranting here and get back on track.
Does anyone know of a caseing-free cheese substitute that would work for using on top of pizza? My 3-year-old would just be in cloud 9 if we can find a way to have pizza again!
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kempy99 added a topic in Gluten-Free Foods, Products, Shopping & MedicationsGluten-free OatsFor those of you that desparately miss that bowl of yummy oatmeal in the morning, there may be good news! I googled "gluten-free oats" and found the following website:
Check it out for yourselves, but it appears that they are safe for us. They are outrageously expensive, but thats probablly a big clue that they are legit. I was just so excited to find this, I had to share!
Anyone ordered from them before? Any comments/feedback.
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kempy99 added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseHelp In Decifering Test ResultsWe've basically been on our own with this from the start and it was all of my reseach into it that led us to order the test from Enterolab. My son's doc has been of no help and we've not had much luck with 2nd opinions either. I have learned the most from you fine folks and my own research into the matter. If any of you would be so kind as to review the tests results we were given (below) and then read through my questions, I would so greatly appreciate your feedback!
First off, Enterolab has been great in providing explainations to the test results (as you will see below) but I still have a few questions that are really leaving us hanging. The test is for my 3 year old son.
A) Gluten Sensitivity Stool and Gene Panel Complete
Fecal Antigliadin IgA 46.5 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 31 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score 123 Units (Normal Range <300 Units)
Fecal anti-casein (cow’s milk) IgA antibody 25 Units (Normal Range <10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0301
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,7)
Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.
Interpretation of Fecal Antitissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.
Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.
Interpretation of Fecal anti-casein (cow’s milk) IgA antibody: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.
For more information about result interpretation, please see the attached FAQ
Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab
Molecular Gene Analysis performed by: Laboratories at Bonfils
Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab
MY QUESTIONS that remain are:
1. the tests indicate that Brandon posses 2 genes for gluten sensitivity. This obviously means that both Adam and I are carriers of that gene and it was passed down to him. Do Adam and I need to be tested, or should we automatically assume that we are gluten intolerant and follow the same diet?
2. The dairy intolerance - is this a life-long thing or possibly when his gut heals (by being on a gluten-free diet for 6mo-1 year) will he be able to tolerate dairy in his diet again without causing harm to his systems?
3. If we can challenge him with dairy, how will we know that it is a problem or not because prior to receiving these test results, he had been consuming dairy and it did not appear to have any ill effects on him.
4. Allison's (my 4 month old who is currently exclusively breastfed) risks of gluten/dairy sensitivity and as we move her into solids -- what things should we avoid?
5. Brandon tested negative for the Celiac gene, but the tests indicated gluten sensitivity. What is the difference?
6. What about oats? Is he able to tolerate oats?
7. Cross contamination. Do we need to buy a separate toaster, pots/pans, cooking utensils, etc... Also separate condiments (i.e. peanut butter, jelly, mayo, etc..) How far do we need to take the gluten elimination?
8. Supplements. Brandon's CDSA indicate "0" (zero) good bacteria so he is currently taking probiotic/prebiotic, ultraflora (yeast), fish oil, and a multi-vit. Is this the optimal regime? For how long should we continue with all of these?
When I asked him all of these, he really didn't give us any sort of a concrete answer. He was just as unsure as we were. THis is so frustrating, but the good news is that since he's been gluten-free (Nov '05) it's definately made a huge difference (his only symptom was chronic diarreha, but in any case it is gone).
Thanks so much for taking the time to read through this post and providing any helpful information that you can!
Rebecca (mom to "gluten-sensitive" 3-year-old, Brandon)
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