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New Parent Coping With Celiac With Daughter


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4 replies to this topic

#1 sandy_swanson1103

 
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Posted 19 June 2010 - 05:36 AM

Hi my name is Sandy, and our 7 year old daughter just got diagnosed with Celiac Disease. We saw the nutritionist on Thursday and WOW!!!! I had NO idea what all this entailed. I am dumbfounded right now. I am so scared for my daughter and I am scared that I will mess something up and hurt her!!!! I know I need to calm down, but this is sooooo serious. When we get insurance on ourselves ( our children have insurance ), my husband is getting tested for Celiac also. Our 4 year old has Graves Disease and so does my husband. We have gotten our 4 year old tested and she is fine. Anyways, sorry to get off subject, but I am wondering what kinds of lotions, toothpastes, shampoos etc are gluten free. We are in the process of getting a new toaster and making other changes, but we are really concerned about detergents and the above listed. If anyone can help I would greatly appreciate it. Thank you all, and I am so glad I found this site!!

Sandy
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#2 ravenwoodglass

 
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Posted 19 June 2010 - 09:41 AM

Hi my name is Sandy, and our 7 year old daughter just got diagnosed with Celiac Disease. We saw the nutritionist on Thursday and WOW!!!! I had NO idea what all this entailed. I am dumbfounded right now. I am so scared for my daughter and I am scared that I will mess something up and hurt her!!!! I know I need to calm down, but this is sooooo serious. When we get insurance on ourselves ( our children have insurance ), my husband is getting tested for Celiac also. Our 4 year old has Graves Disease and so does my husband. We have gotten our 4 year old tested and she is fine. Anyways, sorry to get off subject, but I am wondering what kinds of lotions, toothpastes, shampoos etc are gluten free. We are in the process of getting a new toaster and making other changes, but we are really concerned about detergents and the above listed. If anyone can help I would greatly appreciate it. Thank you all, and I am so glad I found this site!!

Sandy


Hi Sandy and welcome. Read as much here as you can and ask any questions you need to.

Dove and Suave will clearly label gluten containing ingredients. If you prefer organic Giovanni and Burts Bees are good. There are others of course.
I like Tom's of Maine toothpaste but I think crest and colgate are safe, but I could be wrong.
With toiletries some will tell you that they don't matter however anything that gets on her body can get into her mouth or eyes and I and many others choose for those items to be gluten free.
I like to use Arm and Hammer free and Clear for detergent.
Be sure to check any meds or supplements she takes for gluten. Many times we have to call the maker ourselves because doctors don't know and some pharms either don't know or don't check.
Also be aware that items like plaster of paris and playdough are not safe. Sculpey is. Some paints and glues are also not safe but I don't know of the specific brands that are but you may find some answers in the Parents section or you can post about specific items in the section on Products.
Kinnickinnick makes a bread and pizza crusts that our family likes, Gluten Free Pantry also makes some good items. Betty Crocker has also recently come out with some gluten-free mixes.
Kraft and Unilever clearly label and if you have a Wegmans near you they label all the gluten free stuff with a circle G.
I hope this has been helpful. Many of us find it best to make the household gluten free but don't take other family members off gluten until after testing. Also the false negative rate is high in adults and even higher in children. Your son may benefit even if he didn't test positive with the blood work. You also should be tested even if you don't think you have symptoms.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 kareng

 
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Posted 19 June 2010 - 01:49 PM

I have found that Dawn dish soap said they are gluten-free. You know WholeFoods has gluten-free food but so do HyVee and to a lesser extent, Hen House, Walmart and Target. Of course, lots of stuff is gluten-free -fruit, veg, etc.

You will want a note on MD letterhead or script pad to laminate. I needed it so that I could bring my own food into the Atlanta Dome for the high school robotics competition. Mine says dx and a little about eating restrictions and I must bring my own food. I think this will come in handy with kids.

Look around here & watch the date of the post because if it's more than a year old, I would email a company about ingredients. We get new colanders, wooden spoons, cutting boards - things that are hard to be sure no flour or bread crumbs are lurking in the cracks or scratches. My Bed, Bath & Beyond coupons got a Lot of use.

Pb, jelly, margarine may get double dipped . You know there are crumbs in the butter. I use red tape and red utensils for my stuff. They also have pink or purple duct tape at Target and Walmart. You put it on the stuff only she should use.

Gotta go.
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#4 T.H.

 
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Posted 19 June 2010 - 09:09 PM

It's really overwhelming at first, but it really does get better. My 11 year old was diagnosed about 8 months ago, and my 8 year old had symptoms even thought he tested negative, so they are both gluten free right now. So we're still in that 'trying to be safe' stage, ourselves. So...some of the stuff we've found that might help!

1. Very good site: www.glutenfreedrugs.com This site is kept up by a pharmacist, updated frequently, and lists drugs that are gluten free. A LOT of pharmacies right now will not check the gluten status of medication prescribed for your child, even if they have her listed as celiac. Sometimes they will simply give you the medication and not check, or they'll tell you that if you're worried about it, you can call the drug company yourself. This has happened to me at the ER and at various pharmacies, and I've met other celiacs who say the same thing, so this site has been invaluable for me to figure out what medications are safe. They have a pdf you can print out and take with you, including one that lists what tylenol products are gluten free, too.

2. Something to remember as a gluten risk is your makeup. Lipstick and a lot of makeup has gluten, so it's easy to gluten the midgets by giving them a quick kiss, or if they kiss your cheek and you have makeup on it, ya know?

3. There's a good chance that your son will eventually develop celiac disease, I'm sorry to say. 1 in 22 of people 1 degree separated from a celiac (sibling, child, parent) will have it. Also, children have a higher rate of false negatives. I only mention this because for us, after looking at that statistic, we decided to put our son on the gluten free diet as well. However, he was also very small for his age and had other 'symptoms' that could correlate to celiac disease, so that influenced us as well. Considering tha the has improved on the gluten free diet, I think we made a good choice.

4. Cascade dishwasher soap was gluten free, last time I checked. So was Tide laundry soap. The toothpaste, we've been using Tom's brands, which say they are gluten free on their website, but I've been wondering. There is now a gluten free home test kit to test for this sort of thing, and I've been thinking of hunting it down on-line to see. Many company will say 'we use no gluten ingredients' but that's not the same as gluten free. Sort of like...they could make something without any gluten ingredients, but make it in the same room as something that uses flour, and the flour poofs into the air and gets into everything. So...hard. Cleaning products are a big gluten issue, too, if you have a little one who puts hands in mouth a lot. And they are challenging to ge the ingredient lists from, unless you look in the healthfood stores. Products there tend to list their ingredients more often.

5.I haven't found lotions that are gluten free yet, but we didn't look too hard, yet, really. Could use oils or petroleum jelly, and I believe those are gluten free.

6.While googling 'product + gluten free' will tend to help you find posts on products, usually it's still best to call the company yourself. A lot of misinformation, or old information, on the web. Also, if you are looking on the web, one tip is to make sure you know which country your info. is coming from! Many companies don't use gluten in their European products, but use gluten on the exact same brand name in the US. European products also have different rules for what constitutes gluten free.

7. And just for fun, I give you this site: http://lunchinabox.net/ We've been trying to find some fun way for our little ones to enjoy their food, you know? Such a big change and all, and we found this site. It's on bento boxes, American style, and it has all sorts of little recipes and such that can totally be used for gluten free lunches. Just something neat, and fun, and kind of unique, so the different lunches feel cool and special rather than lacking and speical. Just figured I'd pass it on. :-)

Hi my name is Sandy, and our 7 year old daughter just got diagnosed with Celiac Disease. We saw the nutritionist on Thursday and WOW!!!! I had NO idea what all this entailed. I am dumbfounded right now. I am so scared for my daughter and I am scared that I will mess something up and hurt her!!!! I know I need to calm down, but this is sooooo serious. When we get insurance on ourselves ( our children have insurance ), my husband is getting tested for Celiac also. Our 4 year old has Graves Disease and so does my husband. We have gotten our 4 year old tested and she is fine. Anyways, sorry to get off subject, but I am wondering what kinds of lotions, toothpastes, shampoos etc are gluten free. We are in the process of getting a new toaster and making other changes, but we are really concerned about detergents and the above listed. If anyone can help I would greatly appreciate it. Thank you all, and I am so glad I found this site!!

Sandy


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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#5 Kelly&Mom

 
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Posted 22 June 2010 - 09:17 AM

My now 14 yr. old daughter was diagnosed 10 mos. ago and I was diagnosed 4 mos. ago. It's almost easier now that I have the same diet as her, she doesn't feel so alone anymore :) It is amazing how many places you can find gluten but you'll get good at recognizing the different names for gluten and start to know the good brands in your stores.

We use Dove and Pantene for shampoos, body washes, Crest toothpaste, Tide laundry detergent.

Our pediatrician/gastro. doc. had me put my daughter on fish oil-supposed to be healing for her intestinal tract, a good multi-vitamin w/ iron (most are labeled gluten-free if they are) and a pro-biotic as studies have shown most celiacs have abnormal "good" bacteria levels. He also had me get a lactose enzyme as at least initially you tend to be lactose intolerant due to the broken down villa in the intestinal tract.

Udi's bread (freezer section) is really good! We also order the Pamela's brand of baking mix, bread mix, cookies, etc. on (Company Name Removed - They Spammed This Forum and are Banned).

We like quinoa pasta better than the rice and corn pasta, stays firmer. We do lots of grilled, sauteed or roasted meats, potatoes (mashed, baked, Ore-Ida or any way but watch the mashed potato ingred. in instant ones), rice, veggies, fruits. Take snacks with you just in case.

You can go online to most fast food places and look up ingredients. Fries are OK at Chick-fi-let (sp?) and In N' Out if you have them!

Get some good gluten-free cookbooks if you like to cook/bake. Betty Crocker makes yellow, chocolate gluten-free cake and brownie mixes that are decent and sold in most major grocery stores.

Hang in there :) It does get better. My daughter just had her first post-diagnosis blood test and it came back good!!
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Celiac disease, diagnosed 2/10, symptoms since I was about 13 or so. Mom died of non-Hodgkins lymphoma that originated in her intestinal tract at age 56

Daughter, 14 yrs. old, diagnosed 9/10 after about a year of stomach problems, eczema (now gone!!), also has IBS




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