kempy99

Has 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!

Is cross contamination as much of a concern with casien as it is with gluten?

AWESOME!!!! We so miss chocolate! Do you know if either of those are carried in the grocery store or if they are basically on-line order items.

Thanks so much Michael!

Anyone found good gluten-free/cf chocolate? Also when that labels says "cocoa butter" is that a dairy ingredient?

Thanks for your help!

Oh Maureen, I feel for you! I am going through a very similar instance with my 3 1/2 year old son. Our cases are slightly different in that neither my husband nor I have tested positive (well, we have not been tested at all) for Celiac, but my son has gone through testing and although he did not have the "Celiac" gene, he did have a high positive score for "gluten sensitivity" which the doc termed as "Celiac-like disease". Basically he has to follow the same gluten-free (and casien free - tested positive for dairy intolerance as well) diet in order to stay healthy. He had many of the GI symptoms, and this is what prompted us to do the testing. He's been gluten-free for 4 months and CF for about a month. Heis physical symptoms have all but disappeared and I would consider him very healthy in that respect, however the behavioral issue seemd to have worsen! He is an emotional rollercoaster!!! Happy laughing playing nice with his 5 month old sister and the next he'll breakdown over the tiniest little thing. I'm not sure what to make of it. Is he still getting some hidden gluten or casien or possibly some other food that he's allergic to that does not shoe physical signs, but create behavioral disarray (i.e. soy)? Or is it just a part of being 3 1/2? It does not seemt o be better or worse at any time of the day (I was hoping to make a link between days that he's at daycare or days that he did not get a nap (being over tired)) but to no avail, he's over emotional no matter what the circumstances of his day are. I'm really at a loss as to what to do. My husband and I are hoping that its just a phase and we are going to try to ride it out, but if things don't improve in a couple weeks, we may need to seek some professional help for him. Good luck Maureen. Let us know what you find out about your little girl, and if anyone else has any stories to share that may shed some light on this, please do - and thank you to those who already posted a reply. I learn so much from this board and also get a great deal of comfort in knowing that we're not the only ones out there dealing with this and that it can be overcome.

Thank you so much for the suggestions

My 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.

Thanks!

Rebecca

Getting rid of dairy, in many ways, has been much harder than getting rid of gluten.

I agree completely!

Thanks momandgirls for the reply. See we are having a real hard time with this "dairy intolerance" because he was showing no outward signs of the intolerance (as he did with gluten). He seemed to be fine with it, but we had him screened by Enterolab for cows milk sesitivity and his results came back with a definate intolerance to dairy. In fact it indicated that he has an autoimmune reaction to it (much like that of gluten). BUMMER!!!! With the test results came an interpretation/explainationand a FAQ section. Here's what it said about dairy:

Is milk protein sensitivity as bad as gluten sensitivity and do I need to be strict with a dairy-free diet?

Research showing a high association of antibodies to cow's milk proteins in people who react similarly to gluten has been around for over 40 years. More recent research has now confirmed that these reactions to cow's milk proteins (mainly casein but also lactalbumin, lactoglobulin, and bovine serum albumin) are indeed epidemiologically related to autoimmune diseases such as diabetes, psoriasis, eczema, and asthma, among others. While formal studies of dairy-free diets, either alone or in combination with gluten-free, have not yet been conducted on a wide scale, the idea of a gluten-free/casein-free diet is not new, having been employed for decades by many health practitioners. From my objective assessment of this field, and my personal experience with my own dietary elimination for health, I recommend complete avoidance of all dairy products in anyone found to be immunologically sensitive to cow's milk protein by our tests, and anyone with an established autoimmune or chronic immune disease. I predict future research will support this recommendation. Do not bury your head in the sand waiting for such studies. Do your own study and go gluten-free/dairy-free.

So I'm really trying to maintain a "zero allowance" with him.

Thanks for your feedback.

My 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!

Thank you!

Rebecca

For 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:

www.glutenfreeoats.com

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.

Thanks!

Rebecca

We'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!

Sincerely,

Rebecca (mom to "gluten-sensitive" 3-year-old, Brandon)

I just read a short article on non-celiac gluten intolerance. The article stated that celiac disease is only a small part of the larger picture that is gluten intolerance. My daughter, now two, has never really shown the clasic symptoms of celiac, illness, weight loss, distended abdomen, etc. But she did have loose stools and horrible diaper rash.

We have been using and perfecting her gluten free diet for about a year and a half now, and she is rash free, has normal BM's, and is compleatly healthy. Sometimes I feel so crazy about being so carefull about her diet, wondering if I was wrong, did I imagine it all? She has had no diagnostics. Her ped said they were very expensive, (we only have major medical insurance) and that the elimination diet was proof enough of a problem.

Could we be dealing with just gluten intolerance? If so, could it become celiac disease later?

I don't dare take her off the diet just to see if she still reacts.

Has anyone else been where I am?

Thanks, Karen S.

Hi Karen,

Wow, you could not have described our situation with our 3 year old any better. I am in the exact same boat as you - no diagnositic test, same symptoms in the begining (and lack of the clasics), on gluten-free diet and doing great....so what is it? Wheat allergy? Gluten intolerance? Celiac? Neither my husband not I have Celiac (that I know of - or any food allergy to speak of), so that just adds to the confusion. Hoping to find some insight in the other responses to this post.

Good Luck!

Rebecca

I sympathise with you!.It is mad isn't it?

I wish there was an easier way of testing!

Actually the testing that my 3 year old is going through right now (sent the lab pack back today) does NOT require him to be consuming gluten....and even better, it does not require blood sample, rather a stool sample -- much easier to collect from a child!!!!

We are doing our testing through a company called EnteroLab. My son's ped said that he knows of the Dr. that runs that lab and is very highly respected and regarded in the area of intestinal health. Their website is www.enterolab.com. Hope this is helpful!

Rebecca

Oh you guys must have read my mind!!! I had planned on logging on today in search of a good gluten-free cake recipe, as we are preparing for a B-day party next week! THANK YOU!

Rebecca

As of 2-21-06, I have uncovered some info. that may be helpful to you that concerns children.

Very very helpful info! Thanks for posting!!!!

I do not think you are going overboard. A child with celiac is different than an adult. Children do put everything in their mouths, touch everything and everybody, etc. I just posted a list of items that helped me (I did not see this post before I posted mine). Someone on this list just sent me a list of gluten-free items for "newbies" that included a great list of school supplies. I am sorry I can't remember their name right this moment. But I think it is in the gluten-free products/shopping forum? If you send her a message, she will send you the list. It is a great list!

As a child gets older, I am thinking it will get easier (maybe just different? new issues instead of these?) At any rate, toddlers and preschoolers are especially difficult. They don't know yet to be careful and are too young for too much personal responsibility and are so oral. We decided to do preschool at home. I AM NOT SAYING YOU SHOULD DO THIS. I am just saying it was our best way to move forward at the time. My older child has just gone gluten-free as well, so now we have all of the 6 year old gluten-free issues. (Birthday parties, etc.) Would your child's classroom use only gluten-free art supplies and soap for you? I used to teach preschool and had years with highly allergic children (mostly peanuts and tree nuts) in my class. I was always glad to do whatever I could to make them safe and happy. With crayola having so many options, this wouldn't be too hard. You could make gluten-free playdough with gluten-free flour to take in (or the class could make it as a project). Crayola model magic is gluten-free. I have also heard that beeswax is a good modeling alternative. I don't know how old your child is, but even a simple lesson about hand-washing and table wiping might benefit him/her and the children is that class. I have often thought about taking photos of different things we do to make things safe and then putting them in a book form with simple text. This could be made at home and then shared with the class. Children (preschoolers) are generally very empathetic and want to help.

I don't know if any of this is helpful. I hope you are able to work out the very best situation for your family.

Best wishes and hang in there!

Awesome advice. Thank you!!!!!!!!

My son is 3 years old and I agree that this is such a hard age -- he is old enough to remember that he could eat just about anything and not have to worry about gluten contamination (his symptoms did not show up until just last summer and he does not seem to react to everything), but yet he's not quite old enough to understand why gluten makes him sick and/or what products contain gluten (heck, I'm still trying to figure that out). His preschool has been real good about following my instructions for his special dietary requirements, so I'm sure they will do what they can in other areas as well. Thanks again for your reply

I can't offer suggestions with the gluten, but I do want to point out that there are many ways to get sick at a preschool that don't involve gluten. I used to work in a hospital on the same floor as pediatrics. I've never been so paranoid about handwashing and germs. Kids touch tables, elevator buttons, door handles, toys, etc and then rub their eyes, runny noses, etc. I strongly recommend you get your kid into good handwashing practices and using kleenex instead of hands. (We even had training about proper handwashing at the hospital.) I'm sure it will help with gluten but it will definitely help with getting sick in other ways.

They are really really good about the handwashing rules - and with disinfecting and other methods to keep germs to a minimum.

In an effort to be as through as possible, can you suggest other non-food items in addition to the list I've started below that I should check out at my son's preschool in terms of possible harmful gluten-containing sources?

paper towels

napkins

paper plates

hand soap

playdough

finger paint??

glue??

other art supplies????

Am I missing anything? Am I going overboard with worrying about the above.

Thanks again for your help!

Rebecca

Thanks for the replies and the piece of mind (and reality check )! I'm sure I'm not the only one, but being new to this and being scared for the health risks of untreated celiac disease, I will probablly be a little overprotective with my kids until I'm comfortable with my knowledge of the disease and my ability to detect harmful gluten.

Thanks again!!!!

Rebecca

After I posted I read another thread titled "Gluten-free Crackers" - someone suggest Biscotti as an alternative to crackers - this would work perfect for a teething biscuit. I don't know of any gluten-free biscotti, but I'm sure it's out there.

Well, the gluten-free bread that I treid to make my 3-year-old probablly turned out more like a teething biscuit than a fluffy loaf of bread that the recipe boasted

I'm sorry I do not have any serious recommendations for you. My son was diagnosed at 2 1/2 so we were beyond that stage. However I have a 3 month old daughter that I'm not so sure what I'm going to do once she gets into solid foods.

Good luck!

After discovering that paper towels and toilet paper could possibly contain gluten, is it also possible for baby wipes and diapers to contain gluten? If so, does anyone know of any brand that is gluten-free? I'm off to check the websites right now, but I don't even know what ingredients to look for in non-food products. I'm still learning how to read food labels

Thanks in advance for any help/insight on this!

Rebecca

Most ppl here seem to be suggesting soy milk, so then, anyone know if 8th continent is gluten-free? Thier site is about useless.

Sorry I cannot verify if it is or not, as I am wondering the same thing. We drink that as well.

Our daughter is a special case. She was born with a heart defect and had surgery at 9 days old. She sufffered with terrible GI issues for months and the doctors couldn't figure out what was going on. I had suggested Celiac and they dismissed me. Finally after she went through a stomach surgery and was still having serious issues, I ignored the doctors and eliminated gluten from my diet and she started thriving. She has since been diagnosed with Celiac. I should have followed, my gut, but 5 doctors told me I was crazy. I hope your daughter is doing great and not having any of these issues.

Oh my! You and your daughter have sure gone through quite alot in her short little life! So glad to hear that she is doing well now! A "mother's instinct", there truely is something to that! Thanks for the reply.